Home Page Search Final Report Interim Report Evidence - Transcripts - Witness Statements - Submissions - CCNR Report and associated documents - Statistical Reports and associated documents - Background Papers - Expert Papers Inquiry Seminars About the Inquiry Help		Daily transcripts HEARING SUMMARY 16th September 1999 Hearings continued today with evidence from four expert witnesses: Mr Leslie Hamilton, Consultant Paediatric Cardiac Surgeon, Freeman Hospital, Newcastle Upon Tyne; Dr Duncan Macrae, Consultant in Paediatric Intensive Care, Royal Brompton Hospital, London; Dr Barry Keeton, Consultant Paediatric Cardiologist, Southampton General Hospital; and Mr Andrew Derbyshire, Cardiac Nurse Clinician, Royal Liverpool Children’s Hospital. All witnesses today were members of the Inquiry’s Expert Group and gave evidence about the post-operative treatment and care of babies and children undergoing complex cardiac surgery. Their discussions began with the subject of the transfer of patients from the operating theatre to the Paediatric Intensive Care Unit (PICU), the development of the role of the intensivist during the 1980s and 1990s, the importance of teamwork in delivering quality and continuity of care for patients and the importance of communication between members of the multi-disciplinary team and parents. Each witness gave opinions on features of PICUs including: proximity to adult facilities; access to operating theatres, parents’ accommodation and other hospital services. They all stressed the importance of teamwork and maintaining a good working relationship. The experts then commented on the referral and transfer of patients between hospitals, the developments in portable ventilation equipment and the introduction of retrieval teams who collect patients from other hospitals and bring them back to the PICU. They discussed the issue of informing parents about risk and adverse prognosis and concluded by debating hierarchy within the PICU, all giving their opinions about who has overall responsibility for the treatment and care of patients admitted for paediatric cardiac surgery.

FULL TRANSCRIPT

   1                    Day 51, 16th September 1999
   2   (9.40 am)
   3                SEMINAR:
   4         POST OPERATIVE MEDICAL AND NURSING CARE
   5   THE CHAIRMAN: Good morning, everyone. Good morning,
   6     Mr Langstaff. Our delay in starting I understand is due
   7     to some technical problem which has now been sorted out.
   8   MR LANGSTAFF: I hope so: that is, the sorting out. Today
   9     we have, as I mentioned briefly yesterday, four of our
  10     independent experts from the Independent Expert Panel to
  11     talk to us and discuss intensive care.
  12        Working around the room, from nearest to me at the
  13     table on my right we have Mr Andrew Darbyshire, who is
  14     a nurse; we have Dr Barry Keeton, a cardiologist. Then
  15     moving to the usual witness chair, we have nearer to you
  16     Mr Leslie Hamilton, a paediatric cardiac surgeon, and
  17     nearest to the touchpad screen, we have Dr Duncan
  18     Macrae, who is an intensivist.
  19        I am going to ask each of them to take the oath
  20     and then each of them to tell us a little bit more about
  21     himself.
  22        Could you stand, please, to take the oath?
  23           MR LESLIE HAMILTON (SWORN):
  24           DR DUNCAN MACRAE (SWORN):
  25           DR BARRY KEETON (SWORN):

   1           MR ANDREW DARBYSHIRE (SWORN):
   2   MR LANGSTAFF: If we can go round in the same order,
   3     Mr Darbyshire, would you like to tell us a little bit
   4     more about yourself and your particular expertise?
   5   MR DARBYSHIRE: I am now employed as an advanced nurse
   6     practitioner in paediatric intensive care at the Royal
   7     Liverpool Children's Hospital. I am a Registered
   8     General Nurse --
   9   MR LANGSTAFF: Could you bring the microphone a little
  10     nearer to you? I am sorry you inevitably will have to
  11     share with Dr Keeton.
  12   MR DARBYSHIRE: Shall I continue from where I was?
  13   MR LANGSTAFF: Yes, please.
  14   MR DARBYSHIRE: I am a Registered General Nurse and
  15     Registered Sick Children's Nurse. I have
  16     a post-registration qualifications in general intensive
  17     care, the ENB 100. I also have a Masters degree in
  18     clinical nursing. For the past four years I have been
  19     employed as an advanced nurse practitioner in the
  20     paediatric intensive care unit at the Royal Liverpool
  21     Children's Hospital. Previous to that, I was the ward
  22     manager and clinical nurse specialist on the separate
  23     cardiac intensive care unit before the two units
  24     amalgamated.
  25        My experience extends back in paediatric cardiac

   1     intensive care to 1986. I also did two years in adult
   2     intensive care.
   3   MR LANGSTAFF: Dr Keeton?
   4   DR KEETON: Thank you. I am Barry Keeton, consultant
   5     paediatric cardiologist at the Wessex Cardiothoracic
   6     Centre in Southampton General Hospital. I have held
   7     that post since October 1978.
   8        Apart from my medical qualifications, I have
   9     post-graduate qualifications, a Diploma of the Royal
  10     College of Obstetricians and Gynaecologists and
  11     a Diploma of Child Health. I am a Fellow of The Royal
  12     College of Physicians and a Fellow of the Royal College
  13     of Paediatrics and Child Health.
  14        My background is that I trained in paediatrics and
  15     paediatric cardiology, mostly in London, specifically at
  16     the Brompton Hospital. From there I went to America, to
  17     the Mayo Clinic, where I spent about 13 months, and then
  18     came back to take up the post in Southampton.
  19   MR HAMILTON: I am Leslie Hamilton, a Consultant Cardiac
  20     Surgeon in the Freeman Hospital in Newcastle with
  21     predominant interest in paediatric cardiac surgery.
  22     I trained initially in Belfast in Northern Ireland.
  23     I did my initial surgical training there and cardiac
  24     surgical training, and I was involved in paediatric
  25     cardiac surgery there.

   1        I then was the Senior Registrar in Yorkshire at
   2     the unit in Leeds, where I was able to continue my
   3     paediatric cardiac training. I spent a year of that
   4     time at Great Ormond Street, having been appointed
   5     a Senior Registrar in 1985. I spent a year, 1988/89, at
   6     Great Ormond Street, and I was appointed consultant to
   7     Newcastle in 1991.
   8        I have, as I say, a predominant interest in
   9     paediatric cardiac surgery. I am a Fellow of The Royal
  10     College of Surgeons of England and of Edinburgh and hold
  11     the Cardiothoracic Fellowship.
  12   MR LANGSTAFF: Dr Macrae?
  13   DR MACRAE: I trained in Scotland, where I graduated in
  14     medicine in 1980. I then pursued a career in
  15     anaesthesia and I gained the Diploma of the Fellow of
  16     the Faculty of the Anaesthetists of Royal College of Surgeons.
  17     I then specialised in cardiac anaesthesia, particularly
  18     paediatric cardiac anaesthesia, through appointments at
  19     the Brompton Hospital and continued following a year in
  20     Melbourne, Australia, where I was a Fellow in paediatric
  21     intensive care, to pursue a career in that.
  22        I was appointed as a consultant in paediatric
  23     cardiac intensive care at Great Ormond Street Hospital
  24     in 1989, where I have worked for the past ten years
  25     until, that is, the beginning of this week, when I took

   1     up the post of Director of Paediatric Intensive Care at
   2     the Royal Brompton Hospital in London.
   3        I am also a Fellow of The Royal College of
   4     Paediatrics and Child Health. That is about it.
   5   THE CHAIRMAN: If I may interrupt, Mr Langstaff, before we
   6     go further, first of all to welcome all of you and to
   7     thank you very much for helping us, as I am sure you are
   8     going to during the day, but to remind you all that,
   9     important as we are, one of the most important people in
  10     this room is sitting over there, the person who takes
  11     down whatever we say so that it forms part of the
  12     transcript and is available to those who follow our
  13     proceedings from a distance.
  14        Thus, without in any way seeking to inhibit what
  15     you may say as you get involved in talking to us, may
  16     I remind you that sometimes you are going to be using
  17     highly technical language; and secondly, sometimes you
  18     may, in the sweep of the moment, speak rather quickly.
  19        So keep an eye on our colleague over there to make
  20     sure that we are capturing everything. That is a plea
  21     at the beginning and I will not say anything more about
  22     it hereafter.
  23   MR LANGSTAFF: It is particularly useful for the Panel, and
  24     indeed the wider audience, to understand some of the
  25     nuances which might be lost were just one of you, on his

   1     own, to speak or to give evidence. The purpose of
   2     having the four of you, from your different
   3     perspectives, to look at the question of post-operative
   4     care, is that each of you will not only contribute but
   5     will pick up points made by one of your colleagues and
   6     point out that that may not be entirely right, or it
   7     needs to be taken further, or whatever your view may be,
   8     so that we, in the Inquiry, get as good a picture as we
   9     can before we address the Bristol situation and the
  10     adequacy of surgery there later on this autumn, of what
  11     you, as experts, have to say about the process of
  12     post-operative care, not just today but from 1984
  13     onwards.
  14        May I begin by asking you how important the
  15     handover process is from surgery, the theatre, to the
  16     intensive care? Would one normally expect the operating
  17     surgeon to be present during that handover process?
  18        Perhaps, Mr Hamilton, you would like to start us
  19     off on this.
  20   MR HAMILTON: It is a personal feeling but I guess, from my
  21     point of view, that I feel the surgeon should be there.
  22     That is the way I was brought up, if you like, during my
  23     training. That is what I have always practised.
  24     I think that would vary from place to place. It would
  25     depend on the seniority of the other people involved in

   1     the operation. I think if there is a very experienced
   2     Senior Registrar or Registrar who understands the
   3     physiology and the surgery that has been done, then as
   4     long as there is a surgeon available, I think the
   5     surgeon should be there.
   6        The handover time has been where we have seen some
   7     of the most dramatic changes over the years in intensive
   8     care, in that monitoring has improved, and portable
   9     monitoring in particular. Duncan might comment later as
  10     an anaesthetist, but certainly my memories of earlier
  11     days in cardiac surgery were that the change from
  12     theatre to the intensive care was a bit of a "grab and
  13     run", if you like. The monitoring was not very
  14     sophisticated, and there were often problems that
  15     occurred during that time.
  16        One of the things that affects physiology, if you
  17     like, post-operatively, is the way the patient is
  18     ventilated. In theatre they are on a machine which
  19     regulates it very carefully, in intensive care they are
  20     on a machine, whereas on the transfer back to intensive
  21     care, it was just an anaesthetist with a bag and there
  22     could be a lot of variation in that. That in itself can
  23     upset the physiology.
  24        But it is a very critical time in the early hours
  25     after coronary pulmonary bypass, so that handover time

   1     is vital.
   2   MR LANGSTAFF: Over what period of time did the bag cease
   3     to be used and the portable monitor start to be used?
   4   DR MACRAE: We certainly still use bags to ventilate
   5     children between the operating room and the intensive
   6     care unit now. Although there are portable ventilating
   7     systems, they are not commonly used for the very short
   8     transfers, although they are used when transferring
   9     critically ill children from one hospital, an external
  10     hospital, to another.
  11        Portable monitors probably came in widely
  12     available from the early 1990s onwards. I would say
  13     1991/92 was the sort of time that we routinely used
  14     a portable monitor which was able to measure not just
  15     the electrocardiogram which had been used before and
  16     perhaps the oxygen saturation, but also, most
  17     importantly, the patient's blood pressure.
  18        In the years before that, the units that
  19     I practised in, the only handle we had on a patient's
  20     blood pressure in the few minutes between the operating
  21     room and intensive care unit was either a finger on the
  22     pulse of a patient, a very clinical guide, or perhaps
  23     a little bubble in the end of the arterial monitoring
  24     catheter which would move backwards and forwards:
  25     a relatively crude indication, but nevertheless, it is

   1     a guide.
   2   THE CHAIRMAN: Mrs Howard has a question.
   3   MRS HOWARD: Dr Macrae, you talked about the short transfer
   4     from theatre to ICU, and then you talked about the few
   5     minutes. Do you have a period of time that you would
   6     say was critical in terms of both distance and time
   7     between transfer from operating theatre to ICU?
   8   DR MACRAE: I think that is a good question. The transfer
   9     itself, for instance, using perhaps Great Ormond Street
  10     as a model, might seem to be insignificant in that the
  11     operating room is physically 50 feet from the paediatric
  12     cardiac intensive care unit. However, the process of
  13     transfer actually involves taking to bits all of the
  14     established monitoring that has been there for two or
  15     three hours, and everything gets into a spaghetti-like
  16     mess however hard one tries to avoid that.
  17        So there is a period of time in the operating room
  18     when monitoring is being taken down and it is less
  19     efficient, people are busy doing things and it is
  20     a critical time. So the actual physical transfer may
  21     only take half a minute but the process can probably
  22     take 15 minutes from the time that full monitoring was
  23     taken down to full monitoring being established.
  24        So the physical distance I think is less important
  25     than the recognition of the dangers of that period: the

   1     patient having been stable, hopefully, in the operating
   2     room and suddenly, however good the monitoring is, they
   3     are suddenly moved, they are being observed in
   4     a different way, there are different conditions, the
   5     lighting is different. There are all sorts of factors
   6     which actually make transfer of any patient, not just
   7     a cardiac patient, but any ventilated patient or
   8     critically ill patient, really quite hazardous.
   9   MRS HOWARD: What would be the outside period for safety in
  10     the move?
  11   DR MACRAE: I think transfer anywhere within the same
  12     part of a hospital, including transfers between floors,
  13     provided they are properly conducted, are acceptable
  14     even to this day, certainly now provided there is
  15     adequate monitoring. The extension of the process to go
  16     from 50 feet to 500 yards actually in terms of time is
  17     not all that great. I think the majority of the time is
  18     actually the preparation time at the beginning, and then
  19     the re-setup time at the end. The physical difference
  20     is not all that great.
  21        I would not like to be in a hospital corridor for
  22     more than three or four minutes.
  23   MR LANGSTAFF: You used the expression "even to this day" it
  24     is not necessarily unacceptable to have a difference in
  25     level and a lift, presumably, between the two; but that

   1     suggests that you actually regard a lift between two
   2     floors as being undesirable?
   3   DR MACRAE: I have spent time, fortunately not with
   4     a patient, in a lift that did not function. That is
   5     always a possibility, and whilst, you know, one would
   6     always take precautions and take resuscitation equipment
   7     and so on with us, it would nevertheless be a sticky
   8     time if one were in that situation with a very sick
   9     child. So if it can be avoided, that is great. But
  10     I think one has to be pragmatic. Hospitals are not
  11     necessarily designed in a perfect way with the
  12     paediatric cardiac theatre absolutely next to the
  13     cardiac intensive care unit. That is not always
  14     possible. If I were an architect designing a site from
  15     scratch, that is what I would plan.
  16   MR LANGSTAFF: So the ideal is to have the intensive care
  17     next-door?
  18   DR MACRAE: Yes.
  19   MR LANGSTAFF: The further you get away from that, the
  20     further away you are moving from the ideal?
  21   DR MACRAE: Yes, that is correct.
  22   MR LANGSTAFF: The reason it is ideal, it is ideal
  23     presumably from the point of view of the safety and care
  24     of the child, the patient?
  25   DR MACRAE: It is ideal for a number of reasons. The short

   1     transfer is clearly one of them. The second reason,
   2     I believe, is that it puts the intensive care unit very
   3     close to the surgical team and the anaesthetic team, so
   4     that it facilitates communication between the operating
   5     room and the intensive care unit.
   6   MR LANGSTAFF: And the fact of going in a lift, presumably,
   7     can cause a problem in the sense that you cannot get
   8     that many people necessarily in the lift, so some of the
   9     team stay downstairs, some come upstairs. Is that the
  10     way it works or not?
  11   DR KEETON: We have had experience of this in Southampton,
  12     since we moved into Southampton General. I cannot
  13     remember the actual date but it was in the 1980s. We
  14     looked at this very carefully and were very worried
  15     about it.
  16        When we set up the unit, it was not possible
  17     physically to have the operating theatre and the
  18     intensive care unit adjacent to each other; they were on
  19     separate floors. We commandeered one of the hospital
  20     lifts and made it a dedicated lift for the purpose of
  21     transfer between cardiothoracic ITU and the operating
  22     theatres. That lift was equipped with all the
  23     resuscitation equipment and monitoring equipment
  24     actually within the lift.
  25        We also had to ensure that the power supply,

   1     et cetera, was all as secure as possible, and make
   2     arrangements as to what was to happen if the lift broke
   3     down. I remember the discussions very clearly in the
   4     days when we were moving into the general hospital.
   5     So we made do by making it as safe as we possibly
   6     could. We have, touch wood, not had any problems with
   7     it, so I think it is possible. But I agree, it is not
   8     ideal.
   9   THE CHAIRMAN: May I ask a question? Clearly, what you have
  10     just said is in response to Dr Macrae's observation
  11     that one has to be to a degree pragmatic in terms of
  12     what one is confronting. But was the lift large enough
  13     to accommodate both the staff and all the material or
  14     machines that you would need should anything go wrong?
  15   DR KEETON: It can get rather cosy in there! It is
  16     a standard sized hospital lift. It takes a bed and --
  17     the way we got around this was to hang the equipment on
  18     the walls, on rails, so that less space was taken up by
  19     the equipment. The person accompanying the child would
  20     certainly be the senior anaesthetist, his assistant, the
  21     Operating Department assistant, and usually one of the
  22     junior surgeons or the senior registrar would come down
  23     with the child. So we would hope to have within the
  24     lift the key personnel that may be required should some
  25     problems occur during the transfer.

   1   MR LANGSTAFF: One of the themes that is already beginning
   2     to emerge is the importance of communication between the
   3     operating team and the intensive care team.
   4        Mr Hamilton's practice is to go with the patient
   5     to intensive care. What is your general experience,
   6     Mr Darbyshire, of what happens around the country?
   7   MR DARBYSHIRE: Around the country, it is the usual standard
   8     that you will get someone from the surgical team.
   9   MR LANGSTAFF: Someone?
  10   MR DARBYSHIRE: Yes. In my own experience, quite often it
  11     is the surgeon who has done the surgery or it will be
  12     the surgeon who has assisted him. Invariably, you will
  13     have the anaesthetist who has actually run the child on
  14     bypass coming back with the patient and the nurse from
  15     theatre, usually the scrub nurse who scrubs during the
  16     operation will come back. That is my general
  17     impression, talking to colleagues around the country:
  18     that is the usual practice, and it is definitely the
  19     practice that I have seen.
  20   MR LANGSTAFF: Is there a problem if it is not actually the
  21     surgeon who has done the operation, for instance if he
  22     has left his registrar to do the closure and the
  23     registrar comes down? He obviously does not have the
  24     experience of a consultant. He may not have been as
  25     acutely aware of the pressures and so on and so forth

   1     that the surgeon might have been aware of during the
   2     course of the operation.
   3   MR HAMILTON: It is fair to say, though, that an assistant
   4     in a paediatric case, because of the complexity of the
   5     cases, would tend to be fairly experienced and fairly
   6     senior. The main role, if you like, of the surgeon
   7     would be, if there was a disaster, to open the chest.
   8     That would be, often, our first response, to check if
   9     there was any bleeding or any compression of the heart
  10     or whatever. As long as there was a surgeon of that
  11     sort of experience, that would be the main reason for
  12     having the surgeon there.
  13        I think it is interesting, just talking about the
  14     transfer time, I think we have got slower now. Distance
  15     has become less important with modern portable
  16     monitoring. The main time that I fear is the time of
  17     actually moving the child from the operating table on to
  18     the bed. That is where we spend a lot of time making
  19     sure -- as Duncan says, you get everything tangled up.
  20     Once you have the child on the bed for transfer and you
  21     have your monitoring set up, the actual time and
  22     distance nowadays does not matter. We actually have
  23     become slower in our transfers as time has gone on
  24     because there is not the same need to rush to intensive
  25     care to get the monitoring set up.

   1   DR MACRAE: I think that is true. Certainly, in the
   2     transfer of children from other hospitals, there has
   3     always been this debate about "scoop and run" or "stay
   4     and play". We are now very much towards the "stay and
   5     play", in other words, get everything organised and
   6     double-check that we are quite happy with the transfer
   7     before actually going out into the hospital corridor,
   8     whereas perhaps in the old days, when there was not much
   9     monitoring, it was a question of "get this done quickly
  10     so we can reconnect".
  11   MR DARBYSHIRE: I think another important point is actually
  12     the number of moves the patient makes. If you go from
  13     theatre table to a trolley, then a trolley to a bed in
  14     the unit, you are physically moving the patient more
  15     times. I think it is important to take the bed they are
  16     going to stay on straight into theatre and take them
  17     off, so you can avoid such risks as dislodging the
  18     endotracheal tube, dislodging vascular access.
  19        In the length of time it takes to come back, in my
  20     experience one thing I have seen is that you can
  21     sometimes occlude vascular access. Not all the fluids
  22     given in theatre -- say the maintenance fluid would be
  23     stopped just to stop having another piece of equipment
  24     on the bed. I have seen one or two of those catheters
  25     come back and they have actually occluded; they have

   1     actually clotted off on a few occasions. I think that
   2     might be a process of the length of time it has taken
   3     since you actually stopped giving the maintenance fluid
   4     to actually getting back to the unit.
   5   THE CHAIRMAN: May I just ask a question? Mr Darbyshire,
   6     you have been very helpfully recalling your wide
   7     experience and that there is a surgeon or a surgical
   8     assistant, a nurse and the anaesthetist, who would
   9     accompany the child, and you make this observation about
  10     the same bed. But do I take it that you are talking
  11     about what would be described as good or best practice
  12     now? One of the things we have to bear in mind is to
  13     what extent that would have been standard or good
  14     practice in the period we are particularly concerned
  15     with, 1984 to 1995, what Dr Macrae, because of his
  16     youth, describes as perhaps "the old days".
  17   MR DARBYSHIRE: My personal experience has always been that
  18     the child has come back on a bed that has been prepared
  19     in the ITU. One issue about the actual transfer is that
  20     it just does not happen that the patient comes out of
  21     theatre; there is an awful lot of preparation that has
  22     to be undertaken within the ITU. In my experience,
  23     communication between theatre and the intensive care
  24     unit prior to the patient actually coming back, to
  25     actually have some indication about how has the patient

   1     been since it came off bypass, is quite important. You
   2     can get a lot of pieces of equipment ready and have it
   3     prepared, and I think that is an important part, if we
   4     are talking about communication, about the issues
   5     surrounding the transfer: you must be pre-warned to be
   6     pre-armed, so to speak, to be ready.
   7   DR MACRAE: Can I just make an additional comment on this
   8     issue? I think it is true to say that it certainly is
   9     best practice for cots or beds to be taken into the
  10     operating room, but equally, even now in the modern
  11     age, if you like, I would not criticise a practice of
  12     using a trolley. The question is how it is done; if it
  13     is done in a controlled and expert way, then that is
  14     just as acceptable to me, even now, as what we do, which
  15     is use beds and cots.
  16   MR LANGSTAFF: We had presented to us yesterday, by
  17     Professor Marc de Leval, that when surgery was finished
  18     and the consultant surgeon with 20/30 years experience,
  19     and the anaesthetist with 20/30 years experience
  20     (between them, say, 50 years experience) handed over in
  21     intensive care, they might hand over to much more junior
  22     doctors who, between them, might have no more than 5, 6,
  23     8 years experience. So a sudden drop in experience,
  24     which he was suggesting to us carried with it
  25     a potential for difficulty in the continued management

   1     of the child.
   2        Do you see it that way, or not?
   3   DR MACRAE: I think what he was describing was the need for
   4     an intensivist. Perhaps I should first of all explain
   5     what this rather bizarre term means?
   6   MR LANGSTAFF: You would say that, wouldn't you!
   7   DR MACRAE: It is interesting, but in fact it is true.
   8     I cannot say "in the old days" again, but traditionally,
   9     when cardiac surgery started in children, the key people
  10     involved were a paediatric cardiologist who was largely
  11     responsible for pre-operative and post-operative care,
  12     mainly in the non-surgical sense, and a surgeon and
  13     cardiac anaesthetist who were mainly involved in the
  14     immediate operative and post-operative care. There was
  15     not such a thing as a specialist in intensive care
  16     itself. Most of that fell to a combination of the
  17     skills of the anaesthetist to look after ventilators and
  18     some of the devices, arterial lines and access, that
  19     sort of thing, and the surgeon who broadly speaking
  20     perhaps understood the inside of the heart, and between
  21     them they decided what the best support and treatment
  22     for that child is, with additional support from
  23     cardiology.
  24        But the difficulty of course was that at the end
  25     of an operation, a surgeon and indeed his anaesthetist

   1     would probably have to go back to the operating room, or
   2     perhaps even another hospital, to do some of the
   3     procedure, leaving the patient in the intensive care
   4     unit often being looked after by very skilled nurses,
   5     but a hotchpotch of resident doctors in training who may
   6     or may not have particular skills in intensive care;
   7     they were there to monitor and call people back to help
   8     if possible.
   9        The history of my job at Great Ormond Street was
  10     that there was funding for another surgeon and the
  11     surgeons looked at one another and said "We do not
  12     really want another surgeon; we want someone to look
  13     after the things we now do in the intensive care unit,
  14     so let us put the money towards someone to do that, to
  15     take that load off our shoulders so we do not have to
  16     worry about the intensive care unit while we are back in
  17     the operating room".
  18        I think perhaps that helps to explain the
  19     perception of this skill gap, the sort of vacuum that
  20     was there, and increasingly over the last ten years,
  21     that gap has been filled by people who are called
  22     intensivists, many of whom are anaesthetists who
  23     specialise in intensive care, some physicians or
  24     paediatricians who have done the same.
  25   MR LANGSTAFF: If I can just take some of the things you

   1     have said a little further, you were describing the
   2     importance of those in intensive care having access to
   3     expert help, and the expert help you had in mind was
   4     presumably the surgeon, or was it the surgeon and the
   5     anaesthetist?
   6   DR MACRAE: The surgeon and the anaesthetist, yes.
   7   MR LANGSTAFF: And if necessary a cardiologist, all of which
   8     help may have to be brought in from wherever it happens
   9     to be. The surgeon who has operated in the morning may
  10     have a second operation in the afternoon.
  11   DR MACRAE: Correct.
  12   MR LANGSTAFF: He may have to go pretty well straight from
  13     the first operation to the second, might he?
  14   DR MACRAE: Yes.
  15   MR LANGSTAFF: What is the most critical period in intensive
  16     care? Is it the beginning?
  17   DR MACRAE: Yes, I think if things are going to go wrong,
  18     they often do go wrong within the first 6 to 12 hours,
  19     and that certainly is a very critical period.
  20   MR DARBYSHIRE: I would agree. Again, it is in the first 4,
  21     6, 12 hours we see most of the things that go wrong.
  22     Sometimes you may, within the first 3 hours, actually
  23     need to return the patient to theatre in some instances
  24     as well.
  25   DR MACRAE: I think the things that go wrong commonly are

   1     perhaps bleeding in the first few hours after surgery,
   2     and then in the time from sort of 2 to 6 or 8 hours,
   3     a heart may temporarily contract less well. That is
   4     a time when the cardiac output, the function of the
   5     heart to pump blood around the body is, hopefully
   6     temporarily, impaired. I do not know if Mr Hamilton
   7     agrees with that?
   8   MR HAMILTON: I see the IT phase as being in several
   9     different time periods. The first few hours are
  10     critical and that is when things are going to happen
  11     dramatically and you may have to be sharp to pick up any
  12     sudden change like the heart rhythm may change, the
  13     heart may stop or bleeding may impair the function of
  14     the heart.
  15        After that phase, as Duncan said, we know that
  16     putting anybody on coronary pulmonary bypass, even if
  17     you do not do anything to the heart, the heart will be
  18     impaired for the first 6, 8, 12 hours post-operatively.
  19        After that sort of phase you move into what you
  20     would like to see as a steady progression of getting
  21     better, a constant improvement, if you like, and that,
  22     I always explain to the juniors, is like putting
  23     a jigsaw together. You are looking for all the
  24     different little clues you are getting from the patient
  25     that they are getting better. If they are not, that is

   1     the time to intervene. That is a much more prolonged
   2     phase and, if you like, a constant observation.
   3        So I think there are the different timescales in
   4     intensive care.
   5        Once you get beyond that phase, then you are
   6     looking for the more chronic problems like infection and
   7     so on.
   8   MR LANGSTAFF: In the days before there was, then, an
   9     intensivist, someone dedicated to the charge of
  10     intensive care, an expert, on the days when a surgeon
  11     might very well have one operation and then go on to
  12     another, how was any emergency in the first four hours
  13     or so coped with?
  14   DR KEETON: What we did in Southampton, it was difficult.
  15     I think it has always been a problem, that the surgeon
  16     cannot be standing by the bed the whole time and
  17     anything can happen at any time. It is more likely for
  18     things to go wrong in the early hours. There may be
  19     other surgeons in the building who would always help,
  20     and I think it is important to understand that they
  21     usually work pretty well as a team. If the surgeon was
  22     operating and could not leave to come back and see the
  23     child, he would get his colleague to come along, or one
  24     of the more experienced junior staff could "hold the
  25     fort" for a while.

   1        But undoubtedly, it is a problem area.
   2        The key people, of course, the nurses, become very
   3     experienced at knowing what is going on. Clearly they
   4     cannot re-intervene and re-open the chest, but they are
   5     extremely skilled at spotting when problems are
   6     arising. I know on occasions the surgeon has had to
   7     take his gloves off and come down to the unit and see
   8     the child and leave his assistant with the patient on
   9     the table. I think that has happened on one or two
  10     occasions during my career.
  11   MR HAMILTON: The other point to make, when you are
  12     scheduling your list you will try -- different
  13     operations will have different anticipated problems
  14     afterwards. That is one of the keys to intensive care,
  15     anticipating particular problems after that particular
  16     procedure. You would tend to put the most
  17     straightforward case on first so you would not be in the
  18     situation of going back to theatre worried about the
  19     case you have just done and not being able to
  20     concentrate on your next case. I think most surgeons
  21     would take that approach.
  22   MR LANGSTAFF: Has that been a general pattern?
  23   DR KEETON: Speaking personally, yes, it has.
  24   MR LANGSTAFF: When you say that you may need to bring in
  25     another surgeon if surgeon number 1 who has done the

   1     operation is back in theatre, that presupposes that
   2     there is a number of qualified, in a paediatric case,
   3     paediatric cardiac surgeons on hand. That demands, no
   4     doubt, a certain size of department?
   5   DR KEETON: Yes. We have been a two (for a while a three)
   6     paediatric surgeon department and of course there are
   7     times when only one of them is there. It probably would
   8     be safer if you had a department with more people
   9     around, but it is probably not that practicable.
  10   MR HAMILTON: The sort of emergency situation you are
  11     talking about, you do not need particular skills in
  12     paediatric cardiac surgery. You just need a pair of
  13     scissors to open the chest. Any surgical resident will
  14     be able to do that. That is in terms of surgical input
  15     at that stage.
  16   DR MACRAE: I think that is true. The problem basically in
  17     the early stage, the really urgent problem that has to
  18     be sorted out now is cardiac tamponade from bleeding or
  19     something similar to that, and really, once the chest is
  20     open, even if the bleeding is continuing, the problem
  21     is at least temporarily resolved. I think it is
  22     probably fair to say that the level of skill actually in
  23     stopping bleeding is perhaps less than the level
  24     required to do the complex intracardiac operation
  25     itself.

   1   MR LANGSTAFF: So looking at the development of the
   2     intensivist, you described how the post developed in
   3     Great Ormond Street. Was that the way that it developed
   4     across the country? What was the progress of the
   5     development of the intensivist?
   6   DR MACRAE: It still continues. I believe that my
   7     appointment was the first full-time appointment of
   8     anyone in paediatric intensive care. At that time
   9     intensive care was delivered, as I mentioned earlier,
  10     by either anaesthetists, cardiologists or surgeons who
  11     dedicated some of their time to duties in the intensive
  12     care unit.
  13        In some intensive care units at that time, those
  14     people had dedicated sessions. In other words, they
  15     would have time allocated to intensive care duties when
  16     they were free of other duties. Certainly in my
  17     training in adult intensive care, for instance, there
  18     were four consultant anaesthetists who covered the units
  19     and they did one day each week fully dedicated to the
  20     intensive care unit when they were free of any
  21     anaesthesia commitments. That is the way that certainly
  22     some paediatric cardiac intensive care services worked.
  23        Because of the specialisation of paediatric
  24     cardiac anaesthesia, there are not actually too many
  25     paediatric cardiac anaesthetists either, so in the

   1     children's cardiac intensive care units, the intensive
   2     care was delivered by the anaesthetist or the surgeon
   3     whilst doing their other job as well. In other words,
   4     they would be in their operating room nearby the
   5     intensive care unit, and they would try and supervise
   6     the more junior medical staff in the intensive care unit
   7     from the operating room. That clearly is not as
   8     satisfactory as having a full-time dedicated person who
   9     can be there at a senior level and supervise the care.
  10        So I think over the last ten years we have seen
  11     the development of those dedicated sessions or fully
  12     employed intensivists to supervise intensive care.
  13     But even to this day, I think there are some units where
  14     that is not fully in place yet.
  15   MR LANGSTAFF: I would imagine, because of the job that you
  16     do, what your answer might be to the next question, so
  17     I think I will ask Dr Keeton to comment.
  18        How desirable is it to have intensivists rather
  19     than the surgeon or the anaesthetist who took part in
  20     a particular operation looking after the intensive care
  21     unit?
  22   DR KEETON: I think it is very desirable. We have recently
  23     this last year or so got a paediatric intensivist in
  24     Southampton --
  25   MR LANGSTAFF: Could I ask you to pause there and bring the

   1     microphone towards you? That microphone is a bit quiet
   2     and we cannot do much about it.
   3   DR KEETON: In the last year or so we have had a paediatric
   4     intensivist in Southampton and this has been a growing
   5     development in most units since probably the early
   6     1990s, when paediatric intensivists began to be
   7     appointed.
   8        Prior to that, there had been no training
   9     programme for paediatric intensive care, it was not
  10     recognised as a specialty, so that work inevitably was
  11     being done by anaesthetists and their junior staff.
  12        In the same way as Duncan said, the allocated
  13     sessions were given to the cardiac anaesthetic team to
  14     cover ITU, and it was their responsibility.
  15        Prior to that, going back to the 1980s when we had
  16     only two cardiac anaesthetists, they did the job from
  17     the operating theatre, covering the intensive care and
  18     their juniors. I think it is much more desirable what
  19     we have today, and it continues to develop.
  20   MR HAMILTON: I think that was certainly the pattern around
  21     the country, that the intensive care would be supervised
  22     by the anaesthetist and the surgeon. Duncan made the
  23     point, it does not matter what background they come
  24     from, someone present in intensive care who understands
  25     the physiology and the anatomy of congenital heart

   1     defects, whether they are an anaesthetist or
   2     paediatrician or cardiologist I think is less important;
   3     it is the fact they are there and understand what is
   4     going on.
   5   DR KEETON: I think the paediatric cardiologist has a role
   6     to play as well. I was involved a lot in intensive
   7     care. If the chaps were busy in theatre they would call
   8     me and I would go along and make a diagnosis and advise
   9     appropriate treatment, and if necessary put my head
  10     around the theatre door and call the surgeon and say,
  11     "You have to come".
  12   MRS HOWARD: Could I ask Mr Darbyshire: from his experience
  13     I assume he has worked in both situations where there
  14     has been a surgeon lead or an intensivist lead. From
  15     a nursing perspective, what are the differences and can
  16     you take it further in terms of comment?
  17   MR DARBYSHIRE: I think in terms of the management of
  18     problems within ICUs, my opinion has always been it is
  19     part of the nurse's role. Allusions have been made to
  20     having highly skilled experienced nurses within the
  21     environment. You try to get the right people in the
  22     right place at the right time. I think in the era
  23     pre-intensivist it would have been difficult to fulfil
  24     all three criteria at any one point. I think
  25     post-intensivist -- at Liverpool, I think it was 1991/92

   1     when we had an intensivist appointed -- that became less
   2     of an issue because you had somebody who was probably
   3     the right person allocated there and you knew whom to
   4     contact. Part of the nursing role within the ICU is
   5     looking at that jigsaw which Mr Hamilton referred to,
   6     and it is spotting where things are going wrong, where
   7     intervention is needed. Within the nursing role, it is
   8     very difficult -- it is impossible -- to deliver that
   9     intervention yourself, but as I say, just getting the
  10     right person into the arena and telling them what you
  11     have seen was always difficult, before the intensivist.
  12        My own experience has been that it was a mixture
  13     of consultant anaesthetists, cardiologists, surgeons and
  14     I think from a nursing point of view, your first point
  15     of contact was usually a senior registrar in
  16     anaesthetics or a senior registrar in cardiology. They
  17     were always the first point of contact if you had
  18     a problem. The senior registrar in anaesthetics might
  19     be involved in theatre, the SR in cardiology might be
  20     down in a clinic, and there was always a problem about
  21     actually drawing them into the unit if you actually had
  22     a problem.
  23   THE CHAIRMAN: May I follow that question up? I found that
  24     response very interesting. At the time we are talking
  25     about, or now, would there be any sort of protocol or

   1     sense of who is the better person to approach for this
   2     or that problem, so that the nurse having, as it were,
   3     noticed there is a piece of jigsaw out of place, knows
   4     to whom to take that?
   5   MR DARBYSHIRE: I would not say there was any formalised
   6     protocol, but as a nurse, if you were basically faced
   7     with what you considered to be a ventilatory problem,
   8     you called the anaesthetist. If you were faced with
   9     a cardiovascular problem like the patient was starting
  10     to have arrhythmias, then you were more likely to call
  11     a cardiologist.
  12        At times it almost appeared, if you were faced
  13     with very big problems, that it was a question of whom
  14     you could get to be there.
  15   THE CHAIRMAN: That would be because of your training in
  16     being able to identify the nature of the problem. Does
  17     that, as it were, suggest that paediatric training was
  18     important, if not essential, so as to be able to play
  19     that role and identify whom to call in?
  20   MR DARBYSHIRE: I think so. I have experience of working in
  21     adult intensive care as well, and there are very big
  22     similarities between, if you like, the physiological
  23     care of a child in ICU, looking at the physiological
  24     factors of their condition. There are great
  25     similarities. If you are an experienced adult nurse,

   1     I think you can probably cope with the physiology of
   2     children as long as you can adapt it to children, but
   3     they do not have straightforward anatomy. As long as
   4     you can understand that, you can be trained in that.
   5        I think the paediatric nursing part comes in that
   6     it is like treating the whole patient as a child,
   7     delivering the "family-centred care", one of the buzz
   8     phrases that has been around for a while, in
   9     understanding the interaction between the parents and
  10     the child. But in terms of delivering that
  11     physiological care, I think experienced adult nurses,
  12     provided they have made the adjustments into paediatrics
  13     and the anatomical and physiological problems of the
  14     child, could deliver that.
  15   MR LANGSTAFF: Mr Hamilton was talking, in respect of his
  16     jigsaw, the second phase of intensive care, of the need
  17     to pick up the subtle signals which may show that
  18     something is not quite right or may be on a downward
  19     slope and care is not progressing as it might.
  20        Is there, do you think, a difficulty -- this is
  21     what we have heard from others -- in picking up the
  22     subtle signals from a child if one is not particularly
  23     child-centred or child-trained?
  24   MR HAMILTON: Personally, I think the key is that they are
  25     used to dealing with patients who have the abnormal

   1     physiology that we see after coronary pulmonary bypass,
   2     or after repair, closed surgery. I think that is very
   3     specific to cardiac patients. As Andrew said, if you
   4     are an adult nurse, as long as you are in
   5     that paediatric environment, your skill will be in
   6     picking up those subtle signs.
   7        I think, again, the background of the person is
   8     less important than how they are integrated into the
   9     unit. To me, paediatric intensive care is very much
  10     a team thing and everyone has their own input. The role
  11     of the intensivist is to bring all that together. The
  12     nurses are the key at the beside; they are the ones who
  13     pick up, usually first of all, that something is not
  14     quite right. It may be a surgical problem, it may be
  15     something else, but I think it is very much an
  16     integrated thing.
  17        One potential problem in intensive care is if the
  18     nurses get different vibes, different instructions even,
  19     from different people. One of the things we have
  20     discussed and faced is that it is important that all
  21     decisions are channelled through an individual. That
  22     would usually be the intensivist, if there is one, as
  23     long as there is an identified individual through whom
  24     all decisions are channelled. There is nothing worse
  25     for the nurse at the bedside, I am told, from talking to

   1     them, than that they do not know whom to believe or go
   2     by. Hopefully that will not arise, but it is
   3     a potential problem.
   4   DR MACRAE: I certainly would second that. I agree that
   5     intensive care is teamwork. In some ways, getting back
   6     to the period that the Inquiry are looking at, I would
   7     like to slightly get away from the concept of the
   8     intensivist and more back to the concept of intensive
   9     care as a team. Clearly, the resident on the intensive
  10     care unit or a consultant with sessions in the intensive
  11     care unit was an intensivist by another name. I think
  12     where we have developed now, however, is where people
  13     have a much longitudinal view, in other words, you can
  14     deliver point of care, crisis manage effectively
  15     individual patients, but where paediatric intensive care
  16     has gone now by appointing numbers of full-time
  17     intensivists, it has allowed us to develop training
  18     strategies and protocols and have a much better
  19     continuity of care and policies of care within units.
  20        I think that is how paediatric intensive care has
  21     developed, but I think the day-to-day management was
  22     often of a very good standard, even if the people doing
  23     it were doing it from -- or could potentially be very
  24     good, even if they were doing it from the cardiac
  25     operating theatre or on a sessional basis where there

   1     was a different consultant each day of the week. It
   2     could still be care of a high standard, but perhaps what
   3     was lacking in that situation was the opportunity to
   4     train and develop protocols and to fine-tune the care of
   5     children.
   6   MR LANGSTAFF: Two particular points I think emerge from
   7     your contributions. One is the issue of who is in
   8     charge of the patient in intensive care. The second,
   9     which I will explore in a moment, is the question of
  10     adult trained nurses nursing paediatric cases. I want
  11     to explore that a little bit further.
  12        Dealing with the first, was there any general
  13     pattern, as you understand it, as to who was in charge
  14     of the patient once the patient got into intensive
  15     care?
  16   DR KEETON: Certainly in Southampton, the surgeon maintained
  17     responsibility for the case. He had done the operation
  18     and knew what was going on, but he was very much
  19     supported by the rest of the team.
  20        I think the point that the nurses could get
  21     confused about who was actually giving the orders was
  22     a very valid one. If different people came at different
  23     times and made different suggestions, I think nurses did
  24     get confused, but we did try and define any system where
  25     the surgeon had overall control; the paediatric

   1     cardiologist or anaesthetist had major input and
   2     channelled everything through the resident who was
   3     a paediatric Senior House Officer or a paediatric
   4     registrar, so patients were being looked after by
   5     paediatrically trained junior staff.
   6        On the nursing side, clearly it is very desirable
   7     that the nurses have had paediatric training, but we
   8     must not ignore the very experienced nurses who became
   9     very adept at looking after both adults and children
  10     within the intensive care environment. Although they
  11     may not have had paper qualifications, they have looked
  12     after children, and families, for many years and done it
  13     very well. Clearly things have changed in more recent
  14     years, where they now go off on courses and get their
  15     paediatric qualifications, but our senior nursing staff
  16     were very expert with the children. It was not an ideal
  17     environment, we had to make do, but I think they did
  18     quite a good job.
  19   THE CHAIRMAN: May I ask a question which other colleagues
  20     may wish to respond to as well? You say in Southampton
  21     the surgeon was in charge. Did the others know that the
  22     surgeon was in charge? Was this, in other words,
  23     formalised, or was it a matter of perception, perhaps,
  24     offering the possibility of a different perception.
  25   DR KEETON: I think we all knew that the surgeon had a final

   1     say on things. Southampton was a small unit and we were
   2     able to communicate very readily. If a child was not
   3     doing well, everybody was at their bedside, the surgeon,
   4     the anaesthetist, the paediatric cardiologist, trying to
   5     sort out what was going on. There was a small group of
   6     us in the those early days, but I think the surgeon was
   7     the boss and I was happy to allow him to have that
   8     responsibility. But I would hope he would take notice
   9     of what I was saying!
  10   MR HAMILTON: I think I have to comment, as a surgeon.
  11     I agree, I feel I still carry overall responsibility.
  12     I think, having said that, it should not actually be an
  13     issue and it should not arise because if you are working
  14     as a team and discuss everything and everybody is fully
  15     informed, hopefully you are all moving in the same
  16     direction. There may be slight differences in how best
  17     to manage things but those should be resolved by
  18     discussion. At the end of the day, the surgeon's name
  19     is at the end of the bed and he carries the overall
  20     responsibility. But it should not be an issue.
  21        It is interesting that you ask, because at the
  22     next meeting of the British Paediatric Cardiac
  23     Association, that is a topic for debate. There is
  24     actually a formal debate on who actually is in charge of
  25     intensive care.

   1   MR LANGSTAFF: Who is, or who should be?
   2   MR HAMILTON: Both.
   3   MR LANGSTAFF: Who is must depend upon a mixture of
   4     factors. Leaving aside the theory of responsibility,
   5     the actual person who is taking the decisions may not
   6     necessarily be the responsible surgeon if the
   7     responsible surgeon is elsewhere or has a weekend at
   8     home and something needs to be done urgently; somebody
   9     else is going to make the decisions.
  10   MR HAMILTON: I said earlier that all decisions need to be
  11     channelled through one person. If you want to view that
  12     in terms of the person being in charge, that is
  13     correct. I would see that as an important thing. That
  14     is often not, usually not, the surgeon.
  15        But at the end of the day, if there are major
  16     overall decisions to be made -- I am talking in terms of
  17     planning overall care -- then I think the surgeon
  18     carries the final responsibility.
  19   MR LANGSTAFF: Again, examining the idea of final
  20     responsibility, suppose that there is an anaesthetic
  21     problem, a problem of ventilation or intubation: the
  22     surgeon may be ultimately responsible, but is he
  23     actually in charge of that problem or does he defer to
  24     the anaesthetist?
  25   MR HAMILTON: No. Of course if you are working as a team

   1     then you respect each others skills and contribution.
   2     As I say, it is not really an issue -- it should not be
   3     an issue.
   4   DR MACRAE: It is certainly true that the consultant
   5     anaesthetists would be responsible for their own skills
   6     in that area and if there was a problem that clearly
   7     related to anaesthesia, whilst the surgeon and the
   8     anaesthetist together might go to a family to explain
   9     the problem, given that it was the surgeon, if you like,
  10     who got the child into the operating room or put the
  11     child in that situation, suggested that was an
  12     appropriate thing to do, nevertheless the anaesthetist
  13     would be 95 per cent responsible for the anaesthetic
  14     problem. That would be my view, wearing my anaesthetic
  15     hat.
  16   MR DARBYSHIRE: I think one comment I would like to make as
  17     a nurse having experience of this, quite often you have
  18     to maintain a narrative at the bedside because the
  19     surgeon would arrive but would not see the
  20     anaesthetist. You would basically have to convey the
  21     information that the surgeon had given to you to the
  22     anaesthetist. At times they would not actually meet for
  23     a length of time and you would have to maintain this
  24     narrative at the bedside about who had been, what had
  25     been decided and whether that had actually changed; then

   1     revamp the narrative, if you like, for the next one on.
   2   MR LANGSTAFF: Teamwork is all very well if you can reach
   3     a consensus, a team view. What if you cannot?
   4   DR MACRAE: Clearly someone has to be in charge, and
   5     usually, if it is in terms of strategy and major
   6     decisions about to re-operate or reinvestigate, then in
   7     a post-operative patient I would say that the surgeon
   8     would have the final decision.
   9        Getting back to who is in charge on a minute by
  10     minute basis, there clearly has to be one common pathway
  11     and that is usually the senior of the ICU residents.
  12     They need to know what is happening to every patient in
  13     the unit that they are responsible for, and everything
  14     decision, large and small, they need to be aware of
  15     those suggestions and decisions and changes. But when
  16     it comes to major strategy, a child who is not doing
  17     well and needs to be reinvestigated, then the more
  18     senior members of the broad team -- intensive care is
  19     very much teamwork; it is not down to one individual.
  20     It may be that an intensivist is supervising the
  21     minute-by-minute management, but when it comes to
  22     a crisis point, the intensivist is not going to be
  23     a cardiologist, not the surgeon who does the operation,
  24     very often. They need to consult with their senior
  25     colleagues. So in many ways I think I could describe an

   1     intensivist as being, if you like, the general
   2     practitioner who then observes that there is a problem
   3     and then refers to the expert to deal with that specific
   4     problem.
   5   THE CHAIRMAN: I am following this, and of course it is
   6     a statement of the obvious that at any given moment
   7     someone must be in charge. The thing I am interested in
   8     in my question to Dr Keeton is whether everybody always
   9     knows who is in charge and whether everyone always has
  10     agreed as to who is in charge. I get a sense from
  11     Mr Darbyshire's contribution that the nurse who, in
  12     periods of 8 hours or whatever, longer, is always there,
  13     is from time to time perhaps presented with conflicting
  14     strategies, let us say, and although he would accept as
  15     a matter of reality someone is in charge, he may not be
  16     entirely clear who that candidate is or whether there is
  17     any agreement as to that.
  18        So do you not need some kind of -- it is
  19     a question I am asking for your expertise -- do you not
  20     need some kind of greater formalisation of the system,
  21     rather than saying, well, it is all the team, because
  22     all the team may define themselves, if I may use
  23     a soccer analogy as strikers or goalkeepers, and then
  24     there may be some degree of problem.
  25   MR DARBYSHIRE: I always viewed it as more a cricket

   1     analogy, actually. Pre-intensivist, like the English
   2     cricket team at the moment, it seems to change its
   3     captain all the time. With intensivists, it is more
   4     like having WG Grace who is going to be there for the
   5     next 30 years: you can identify with that person as the
   6     leader of the team within the PIC unit.
   7   MR HAMILTON: If there is a problem in that area, then the
   8     senior nurse in the unit, if they are running the unit
   9     well, will bang some heads together and find out exactly
  10     who the nurses are meant to take final decisions from.
  11   THE CHAIRMAN: That then becomes, does it not -- again, the
  12     benefit of having you four with your huge experience --
  13     a question or so of wider management. That itself needs
  14     to be engaged, does it not?
  15   DR KEETON: I think if a team cannot work together then it
  16     is a dysfunctional team. I think you are making
  17     a problem that probably does not exist that often.
  18     I accept that occasionally there will be disagreements
  19     on the way things should be managed, but it is an
  20     infrequent occurrence, in my experience. I think that
  21     most members of the team are experienced and reasonable
  22     and they will discuss it and come to a consensus view as
  23     to what the best management should be at a particular
  24     time.
  25   MR HAMILTON: I think one of the changes we have seen in

   1     intensive care, as Andrew quite rightly points out, is
   2     that in the past messages might have been passed from
   3     one member to another through the nurse, and that system
   4     can work. I think the trend has been, over the last few
   5     years, I guess, to have formal joint ward rounds on
   6     a regular basis. Certainly in the past it was
   7     a question of the surgeon might be on an early morning
   8     ward round and then the anaesthetist would come later to
   9     manage the unit for a day and they might pass a message
  10     through the nurse.
  11   THE CHAIRMAN: Mrs Maclean?
  12   MRS MACLEAN: I am very interested in what you are saying,
  13     the difference between now and the past. When exactly
  14     would the "past" be, roughly speaking?
  15   MR HAMILTON: It is hard to be specific. There are
  16     different arrangements around the country in different
  17     intensive cares, so it has been a gradual process rather
  18     than a cataclysmic event. I do not think one can be
  19     specific.
  20   DR KEETON: I think a formal ward round is a very desirable
  21     aim, but it is often not that practical when many
  22     members of the team have very busy programmes. Speaking
  23     personally from a paediatric cardiology point of view,
  24     my day is very committed most days. Often I am doing
  25     clinics hundreds of miles away from Southampton and

   1     could not possibly be on a formal ward round unless it
   2     was before 5.30 or 6.00 in the morning, which is not
   3     terribly practical.
   4        So I think it is an aim we would like to achieve,
   5     but with our current personnel and numbers, I do not
   6     think we can commit ourselves to a formal daily ward
   7     round; it just is not possible.
   8   DR MACRAE: If I can comment on the situation at Great
   9     Ormond Street, we always said that we wanted to have
  10     surgical representation on the main intensive care ward
  11     round of the day. In theory, that was always going to
  12     be possible, but surgeons being surgeons always drift
  13     off to the operating room to watch some interesting
  14     thing happening and leave the poor old intensive care
  15     unit behind. We eventually solved that, I have to say
  16     at the expense of my breakfast, by walking around with
  17     the surgeons at 7.30 in the morning. That clearly was
  18     so they could go off and do their operations at 8.30.
  19        That is a fairly drastic step to take, if you
  20     like, but it did work extremely well. Whilst I perhaps
  21     moaned and groaned at the start of this, I soon realised
  22     that actually that dramatically improved communication,
  23     because we would have a situation where there were two
  24     or three consultant surgeons and two or three
  25     anaesthetists or intensivists on that round, plus some

   1     junior staff, and that took our quality of care several
   2     steps forward, by making that joint round.
   3   MR LANGSTAFF: So in order to have the collectivism of the
   4     team operating in the patient's best interests, the need
   5     is for communication. You are saying that is best when
   6     it is co-ordinated by some system or other.
   7   DR MACRAE: The more senior level the communication occurs
   8     the better, but it is very important that the person who
   9     is at the bedside all the time, the nurse and the
  10     resident, the trainee in charge of the unit on
  11     a minute-by-minute basis, are also involved in the
  12     discussions and are certainly informed of any collective
  13     decisions which are arrived at, the strategies or
  14     policies arrived at for a particular patient.
  15   MR LANGSTAFF: Can we take it as a given that throughout the
  16     period the Inquiry is interested in, the need for
  17     communication and the co-ordination of it would have
  18     been appreciated by anyone involved in intensive care?
  19   DR MACRAE: I can only speak personally, but I have always
  20     been very aware that there are lots of interfaces in
  21     this type of team and that almost inevitably when
  22     problems occur, they occur because of failure to make
  23     a particular person in the team aware of the situation;
  24     failures of communication, yes.
  25   MR HAMILTON: I think in the past it might have been more

   1     a picture that one person would be there and they would
   2     call in the "fire-fighting", if you like. They would
   3     call in the particular expert they wanted to deal with
   4     the particular problem. That trend has been more
   5     towards the more formalising of communications, as
   6     Duncan says.
   7   THE CHAIRMAN: I wonder what you four experts would say to
   8     a slightly provocative observation, that in many other
   9     sectors of activity, in industry, for example, it would
  10     be deemed quite surprising, even in the early 1980s, for
  11     activities of the sort we are talking about, which are
  12     high risk activities, not to have been subjected to very
  13     careful management and organised control, if you will,
  14     whereas here Dr Keeton says that if they do not work
  15     together they are a dysfunctional team but that does not
  16     happen very often; and you all say, "Well, we all more
  17     or less know who is in charge at any given moment".
  18        I am saying this provocatively; these are not
  19     necessarily the views of anyone but they need to be
  20     tested. That is what we are here for, drawing on your
  21     experience for. Is that an observation you would like
  22     to comment on?
  23   DR KEETON: I think I accept your comment and the
  24     criticism --
  25   THE CHAIRMAN: It is not a criticism; I put no value on what

   1     I am saying, I merely seek your advice, as do we all.
   2   DR KEETON: I think that the members of the team have
   3     different skills and the problems that the children have
   4     would need principal advice from one of those members of
   5     the team, whether it is surgical or anaesthetic,
   6     paediatric cardiological, or maybe renal or whatever.
   7     The hierarchy that we have, it is not a firm structure
   8     like that. I am not sure that this field lends itself
   9     to autocratic boss and everybody having to take what he
  10     says. There is much more interplay in the care of
  11     a child.
  12   DR MACRAE: I think that is right, certainly now, but
  13     I think at the start of this period, that was the end of
  14     the Sir Lancelot Sprat autocratic surgical approach
  15     where the surgeon was very definitely the boss and
  16     everybody else did what the surgeon said. You did not
  17     change his prescription for X, Y or Z without very good
  18     reason, unless you wanted to be scored off the Christmas
  19     card list.
  20        Things have evolved from that during the period
  21     the Inquiry is looking at. I suppose from a management
  22     point of view, the attitude then was, there was nothing
  23     for these children unless they had an attempt to do
  24     something. If this man thinks he can do it, that is the
  25     way we should allow it to happen. That has now evolved,

   1     I think. There is much more discussion and people are
   2     more realistic about what their role in the team is and
   3     the surgeon is no longer -- I am sitting next to one,
   4     I have to be very careful -- in places I am aware of,
   5     the autocrat. They may be in overall charge of the
   6     case in the nicest sense, but they are not dictating
   7     every single thing and sitting on top of people who have
   8     perhaps better skills in decision-making in those
   9     sub-areas.
  10   MR HAMILTON: I would agree entirely, and I will still send
  11     you a Christmas card! We should not lose sight of the
  12     fact that the majority of patients actually go through
  13     intensive care remarkably smoothly, with skilled
  14     nursing. When you are adjusting the parameters of the
  15     cardiovascular system there are unlimited number of
  16     things to do and watch for, and the majority of patients
  17     do not require great intervention by the team. There is
  18     a process and the nurses are very skilled in that, and
  19     they know in most situations how to progress the
  20     patient. It is the patients who are not progressing
  21     that need the intervention of the team. That is
  22     relatively uncommon.
  23   MR DARBYSHIRE: It is a question of the differentiation
  24     between the ones that will get better and the ones that
  25     will not. I think it is part of the issue. It is like

   1     actually trying to identify early enough these are
   2     patients who are not quite going to get through, and
   3     what can we do about that.
   4   DR MACRAE: I do not think we should give the impression
   5     that there were no processes in the early era of
   6     paediatric cardiac surgery. The common post-operative
   7     protocols, the things that doctors -- you go from unit
   8     to unit and what is written down for the post-operative
   9     orders for a particular procedure are very similar
  10     between units. That is the distillation of skill, put
  11     down on paper, so it may not have been presented as sort
  12     of managed care, but that is actually what did come out
  13     of it.
  14   MR LANGSTAFF: I think the point you were perhaps addressing
  15     was the change in approach to management. I noticed
  16     that Mr Hamilton used the word "responsibility" which he
  17     feels he has as a surgeon, whereas the Lancelot Sprat
  18     days would be the day when the surgeon was not so much
  19     responsible as in charge. Perhaps the difference
  20     between those two words: does that perhaps give us an
  21     idea of the flavour of how attitudes have changed, or
  22     not?
  23   MR HAMILTON: Yes. Looking back from my own personal
  24     experience, I was appointed a senior registrar in 1985,
  25     roughly the beginning of the time period the Inquiry is

   1     looking at. Because of my interest in paediatric
   2     cardiac surgery I was appointed as the senior registrar
   3     responsible for intensive care. I would do a morning
   4     ward round and layout plans for the day, the nurses
   5     would take those forward, the anaesthetists would come
   6     in later in the morning and have a look round, check
   7     that what I had decided was okay, and if there was any
   8     particular intervention to be done, then fine. The
   9     other senior registrar, my colleague, would deal with
  10     any ventilatory things, but we worked very much as
  11     a team. I think that gradual change has been away from
  12     an individual senior registrar running the unit towards
  13     a full-time intensivist who would be there all the
  14     time. That has been, I think, the trend in most units
  15     over these years around the country.
  16   THE CHAIRMAN: I just wanted to have one more bite at this
  17     particular cherry.
  18        What Mr Hamilton has just described is a system
  19     functioning and Dr Macrae referred to the existence of
  20     protocols, understood as being such, but of course in
  21     management terms, is it not the case, would you not
  22     think, that one needs always to have a plan B if there
  23     is a dysfunctional team or if some disagreement does
  24     arise, and therefore one must have structures in place
  25     for dealing with that.

   1        Is it your experience that they existed, or exist,
   2     or that the need never arises for it?
   3   MR HAMILTON: Again, from the personal experience I have
   4     just recounted, I would go round and make the decisions
   5     in the morning. If the child is getting better, I have
   6     done the right thing. If the child is not making
   7     progress, then either my boss would have words or the
   8     anaesthetist would come along later on. So it was
   9     a team, it was not all there at the same time, but I do
  10     not think that was dysfunctional.
  11   DR MACRAE: I think what you are getting at is the sort of
  12     anecdotal situation where Dr X does not talk to Dr Y
  13     because he bought a car that was bigger than his, or
  14     some professional disagreement -- perhaps I should not
  15     be too flippant about it. I think I probably have seen
  16     examples where that can impact on the way a unit feels
  17     or indeed the way a unit functions, and certainly, in
  18     today's climate, it is absolutely essential to have
  19     mechanisms in place to nip things in the bud and have
  20     a professional way of dealing with disputes, and, if
  21     necessary I suppose, a disciplinary route as well, if it
  22     is a non-clinical matter.
  23   DR KEETON: The structures are now in place within the wider
  24     hospital, in the Trust. I do not think such structures
  25     were in place within the department, although the senior

   1     members of the department would probably have a view on
   2     it and may well have a quiet word on the side. If there
   3     was some issue going on of the sort we have mentioned
   4     with Dr X not speaking to Dr Y and if that was
   5     inflicting on patient care, I would see it as
   6     a responsibility of some senior member of the department
   7     to take that in hand.
   8        We now of course have directorate structures.
   9     Those did not exist in the days we are talking about.
  10     I am not sure when the first director came in, but it
  11     would now be the responsible of the director to address
  12     those sort of problems.
  13   MR HAMILTON: I think it is important to remember that every
  14     child is different and every child will respond
  15     differently to even the same operation, so it is not
  16     like a production line. You cannot set out rigid
  17     protocols; there has to be flexibility in the system.
  18   DR KEETON: There were some protocols in some centres, were
  19     there not? I remember that the Alabama unit, I think,
  20     was legendary for having a very strict protocol-driven
  21     management. In the event this happens, you do X; if
  22     that does not work you do Y. It was all very clearly
  23     written down. We did not have such structures.
  24   THE CHAIRMAN: Mrs Maclean?
  25   MRS MACLEAN: May I ask Dr Macrae: while we are looking at

   1     the position of the intensivist, there seem to be two
   2     intermingled aspects to it. One is the clarity of the
   3     first point of contact, who is the responsible person,
   4     but the other issue, am I right in thinking, is to do
   5     with accessibility? Is it the case that where you have
   6     a single identified intensivist, that that person would
   7     be more accessible than under the previously changing
   8     shared responsibilities?
   9   DR MACRAE: It is not necessarily true to say that
  10     surgeons, even if they are involved in a second
  11     operation in the operating room, is not accessible.
  12     They are probably accessible to a verbal communication
  13     and in a crisis could make themselves physically
  14     available, but it is clearly much easier for a resident
  15     or a nurse to discuss a minor or potential problem with
  16     an intensivist who is only on call, available for the
  17     intensive care unit, where they might hold back and say
  18     "I will speak to Mr Hamilton when he has finished his
  19     operation", by which time a problem may have developed
  20     from something that was insignificant and could have
  21     been corrected at an early stage into something which
  22     was much more serious.
  23        I think that is an important difference between
  24     the way that we practise now and perhaps practised 10 or
  25     more years ago.

   1   MR HAMILTON: Again, changes that have happened over the
   2     years, many of the key things that need to be adjusted
   3     post-operatively are the ventilation parameters, which
   4     would obviously fall to the anaesthetist. I know in
   5     Newcastle, before I started, they did not actually have
   6     a resident anaesthetist at night; the consultant would
   7     be phoned up at home. That obviously changed and then
   8     I was a resident anaesthetist, and I think that is
   9     compulsory.
  10   MRS MACLEAN: What dates are you thinking of there?
  11   MR HAMILTON: That would be the late 1980s. I started in
  12     1991, so ...
  13   DR KEETON: Do you mean another resident anaesthetist at any
  14     level, or at consultant level?
  15   MR HAMILTON: The consultants were very involved in joint
  16     adult and paediatric intensive care. Again in Newcastle
  17     there was a paediatric section of the adult intensive
  18     care and that was one of the other changes that
  19     happened -- again, it would be about 1989/1990, as it
  20     was in many units around the country. In Leeds again it
  21     happened in about 1985, I think, that they separated.
  22   MR LANGSTAFF: I think what Dr Keeton was asking was: was
  23     there no resident anaesthetist at any level?
  24   MR HAMILTON: As far as I am aware, no.
  25   MR LANGSTAFF: You obviously asked that because you were

   1     surprised by it?
   2   DR KEETON: I am surprised. I would have thought you could
   3     not do this without having at least a fairly senior
   4     registrar within the building.
   5   MR HAMILTON: There was someone who was probably -- we are
   6     all unique as human beings, but this particular
   7     character was very involved. He lived a short distance
   8     from the hospital and was in instantly if there was any
   9     problem, so I think that was how they managed. But he
  10     obviously recognised that was a problem and they then
  11     instigated a resident anaesthetist. That is just to
  12     illustrate the changes that have happened.
  13   MR LANGSTAFF: Sir, may we call time on the first session
  14     this morning? It has overrun because of the interesting
  15     interchange that there has been. Perhaps if we start
  16     again at a quarter past 11?
  17   THE CHAIRMAN: Yes, it is very important that we hear these
  18     exchanges. This is how we learn. We are here to
  19     learn. Let us take a break now for 15 minutes and then
  20     reconvene at 11.15.
  21   (11.00 am)
  22               (A short break)
  23   (11.15 am)
  24   MR LANGSTAFF: Can we come back to the topic of the need or
  25     not for there to be paediatrically trained nurses in

   1     intensive care and tie that in with whether it is, in
   2     your view, desirable, important, essential, not at all
   3     important, not at all essential, or whatever, to have a
   4     dedicated paediatric intensive care unit, whoever starts
   5     it, as opposed to a mixed paediatric and adult unit?
   6   DR MACRAE: I think on the question of first of all nursing
   7     skills, some of the best paediatric cardiac intensive
   8     care nurses I have come across have actually been adult
   9     nurses who have come to paediatric intensive care
  10     nursing, adult nurses with intensive care training, who
  11     have been absorbed and trained within the unit by the
  12     paediatrically trained people there who really have been
  13     excellent nurses.
  14        Having said that, the overall feel of the
  15     paediatric nursing needs to come from nurses with
  16     paediatric training, so it is possible for units to
  17     function with a proportion of intensive care trained
  18     nurses who are not specifically paediatric nurses but
  19     there very definitely needs to be a balance, or indeed
  20     a majority, of paediatrically skilled people to set the
  21     overall tone and policy of the unit.
  22        In terms of whether a paediatric intensive care
  23     unit should be separate for cardiac surgical patients,
  24     that depends, I think, more on local circumstances.
  25     There are certainly benefits in a large programme in

   1     having a completely separate unit that is independent,
   2     has its own staffing structures. In a unit that is
   3     perhaps less busy, whilst the physical environment for
   4     the care of paediatric patients should, I think, be
   5     separate from the environment where adult patients are
   6     cared for, that does not mean they have to be in a
   7     completely separate unit. There can be a common
   8     resource and even common management, and paediatric
   9     skills allocated within that geographical unit. I am
  10     thinking of perhaps a four-bedded paediatric room which
  11     is next to a slightly larger adult intensive care area,
  12     but the skills that are deployed to that area and the
  13     way that that particular subunit functions must very
  14     definitely reflect the needs of children rather than the
  15     needs of adults, and certainly not treat children as
  16     small adults.
  17   MR DARBYSHIRE: I think in terms of the need for paediatric
  18     nurses, obviously as I am a paediatric nurse myself I am
  19     not going to speak against the role of paediatric nurses
  20     in intensive care nursing.
  21        I take on board the point that Duncan made, that
  22     an adult ICU nurse may well be able to offer very good
  23     physiological care for children within the ICU, and
  24     maybe from a medical perspective that is how you would
  25     judge a good nurse; what information you get to enable

   1     you to do your job. I think from a paediatric nursing
   2     perspective there is a little bit more to it and I think
   3     paediatricising a unit is something that paediatric
   4     nurses are qualified and trained to do.
   5        I think the support of the family, again, is
   6     something specific to paediatrics, and the involvement
   7     and the relationship between the patient and their
   8     parents is very important and is an important facet, so
   9     if you like, paediatric training.
  10        I think there is a bottom line underneath all the
  11     statements I have made that is what is really important
  12     is that you have a skilled, experienced paediatric
  13     intensive care nurse, and they can come from an adult
  14     background. They can come from a paediatric
  15     background. It is the experience that they have within
  16     the PICU that I think is of fundamental importance.
  17        There are all sorts of arguments about what sort
  18     of ratio do you need of paediatric trained staff to
  19     non-paediatric trained staff; I do not know the answers
  20     to those questions. I know recent guidelines have been
  21     published that state that a very large percentage should
  22     be paediatrically trained.
  23        I think the other issue surrounding paediatric
  24     nurses in PICU in a mixed unit is how you actually
  25     allocate those staff to the patients. Do you have an

   1     individual nurse who one day is allocated to adult
   2     patients and the next day to paediatrics? No matter how
   3     good an adult nurse is, on the first day she looks after
   4     a paediatric patient she will not be as good
   5     a paediatric nurse as she was an adult nurse and it is
   6     how you actually structurally organise that situation in
   7     a mixed unit that I think would be of great importance
   8     in the delivering of skilled nursing intervention
   9     really.
  10   MR HAMILTON: Essentially I would agree with both the
  11     previous speakers. As a surgeon, I want a nurse at the
  12     bedside who is going to pick up the subtle changes that
  13     we see after cardiac surgery, so I want an intensive
  14     care nurse who is experienced in and knows about
  15     cardiopulmonary bypass and post-operative cardiac
  16     patients. I think it is very important to have the
  17     paediatric environment. Whether it is physically
  18     separate has to be clearly identified, and I think the
  19     senior nurses in the unit need to be paediatrically
  20     trained to bring that paediatric component and the care
  21     of the whole family into it, so I think those need to be
  22     wedded together.
  23   MR DARBYSHIRE: I think I just want both. In my position as
  24     a ward manager, what I would want is actually both
  25     together.

   1   MR HAMILTON: I do not think, as you say, that it matters
   2     really what background they come from. Whether
   3     they have intensive care experience is the key thing.
   4   DR KEETON: I would agree with the previous comments that
   5     have been made. I obviously have personal experience of
   6     evolving from working within a specific cardiothoracic
   7     intensive care unit which housed both adults and
   8     children to now the much better situation that we have
   9     of having a separate paediatric ITU.
  10        I think the paediatric bits of nursing -- the
  11     paediatric nurses do not have a monopoly of it. There
  12     were some very good adult-trained intensive care nurses
  13     who were extremely good at looking after children and
  14     within our unit we had a group of nurses within the
  15     intensive care unit staff who liked looking after
  16     children and who did it quite well, and in fact they are
  17     the nurses now who have gone off and got their
  18     paediatric qualifications and now some of them are
  19     running the paediatric intensive care unit or the
  20     cardiac bit of the new paediatric intensive care unit
  21     which we have.
  22        As for the physical environment, clearly it was
  23     highly undesirable to have children and adults in
  24     adjacent beds. Neither patients really were properly
  25     housed. Resources were such that it took a long time

   1     for us to be able to get a separate paediatric intensive
   2     care area, and even now we are still developing it and a
   3     new one will open next year.
   4        I think the nursing staff did their best to try to
   5     make the environment for the child as pleasant as
   6     possible in terms of putting them in a separate room
   7     where it was appropriate and putting out toys and
   8     suchlike, but there is more to paediatric nursing,
   9     I know, than just creating a pretty-looking environment
  10     with pretty teddy bears and things. There is more to
  11     paediatric nursing than that.
  12        So I think the ideal, and we have now come to it
  13     in most units, is to have a separate paediatric ITU
  14     staffed by very good paediatric intensive care nurses
  15     who are experienced in cardiology.
  16   MR LANGSTAFF: The way that you put it, this has been a
  17     gradual development throughout the period of this
  18     Inquiry. That is what we have heard from other sources,
  19     from the Royal Colleges. At what stage in the
  20     chronology from 1984 to 1995 did it cease to become
  21     something which one would aspire to and become one which
  22     really you ought to have?
  23   DR KEETON: I think the pressure really came most recently
  24     from the Government's document, I think it was in 1997,
  25     when the pressure was really put on for the Trust to

   1     develop paediatric intensive care unit facilities.
   2     I think there were two reports: "Bridge to the Future"
   3     and "Framework for the Future" I think they were
   4     called.
   5        It was from that time that we were able to push to
   6     get separate facilities. Prior to that there was a BPA
   7     report, I think, in about 1993, advising that paediatric
   8     intensive care facilities were provided. At that time
   9     our nurses -- I think it was the late 1980s, early 1990s
  10     that they started going off and getting their paediatric
  11     qualifications. In fact our senior nurse came to
  12     Bristol to do her paediatric intensive care training
  13     here, although she had been a very experienced ITU nurse
  14     looking after children within our mixed unit.
  15   DR MACRAE: Could I make a comment that there is, I think,
  16     a distinction between the development of paediatric
  17     intensive care units generally and the care of children
  18     following cardiac surgery because there is a trade-off.
  19     Yes, you can develop a regional paediatric intensive
  20     care unit that will take all children who require
  21     intensive care, and that may be children who have burns,
  22     children with head injuries, children following cardiac
  23     surgery, children with respiratory ailments, renal
  24     problems, children following cancer treatment, and,
  25     fine, they will be in a completely paediatric

   1     environment, cared for by nurses who are all trained in
   2     paediatric intensive care, but the cardiac part of that
   3     may only be 15 or 20 per cent of the caseload. So the
   4     trade-off is: do you have the child in the end of the
   5     cardiac intensive care unit, where they are perhaps 30
   6     or 40 per cent of that unit's intensive care workload in
   7     a room that is decorated as a children's sub-ICU, do you
   8     have them there with a little bit of interplay between
   9     the adult and paediatric service, or do you put them in
  10     the specialist paediatric ICU where perhaps the level of
  11     pure cardiac skill and expertise in purely cardiac
  12     matters is actually less than it would be if they were
  13     back in the mixed unit?
  14        So there is a trade-off and I do not think that
  15     we have answered that yet.
  16   MR LANGSTAFF: I was going to say, you have posed the
  17     question; what is your answer?
  18   DR MACRAE: It is difficult for me to answer in the sense
  19     that both in my present position and in my position at
  20     Great Ormond Street I have worked in units that have a
  21     high throughput and therefore are able to sustain a
  22     sufficient volume to have separate adult and paediatric
  23     units. The units would simply be too large to manage if
  24     adults and children were thrown together so that, in a
  25     sense, is difficult for me to come to terms with, but

   1     I certainly can see that in some circumstances where the
   2     volume of activity through a unit is smaller, there may
   3     still be an argument for, yes, protecting the paediatric
   4     side of things but nevertheless sharing some of the
   5     common skills and resources. The availability of
   6     resident anaesthetists, for instance, might be very
   7     difficult to double up in a small unit.
   8        If there are only one or two patients typically in
   9     a unit at a weekend, it is difficult to justify a
  10     completely separate on-call system for those two
  11     patients, and then it may be possible to bring the two
  12     together.
  13        There are good examples worldwide of very
  14     successful intensive care units -- in Melbourne for
  15     instance, and in Toronto -- where there are both cardiac
  16     and general intensive care patients together. Equally,
  17     there are examples of, say, Boston Children's Hospital
  18     where there is a very definite distinction between
  19     cardiac and non-cardiac patients, even within a
  20     children's hospital.
  21   MR LANGSTAFF: Do I take it that your ideal, because of your
  22     experience, is to have a sufficient size and throughput
  23     to have a dedicated paediatric cardiac intensive care?
  24   DR MACRAE: Yes, I think that is ideal.
  25   MR LANGSTAFF: That really is a function of size, so a unit

   1     has to be large enough to have the throughput to justify
   2     that or to operate that.
   3   DR MACRAE: Yes, absolutely.
   4   DR KEETON: I think throughput is a problem. We are a
   5     relatively small unit in Southampton doing 250 cases a
   6     year, roughly. When we were a combined unit, the eight
   7     intensive care beds which were physically together in
   8     cardiothoracic ITU could be housed very flexibly to
   9     house either children or adults or a mixture. We did
  10     not have a firm, physical demarcation that those beds
  11     were paediatric and those beds were adult, so on
  12     occasions when we had sudden rushes of babies, as
  13     occasionally occurs, we might have seven -- or I think
  14     on one occasion all eight beds were filled with
  15     children.
  16        Then, when the units were separated and we
  17     eventually grew to 12 beds and the four paediatric beds
  18     were put the other side of the wall into paediatric
  19     intensive care, and some of the other paediatrically
  20     intensively cared for patients were put together with
  21     them, we lost some of that flexibility in that, when we
  22     did have the need for six, seven, eight children to be
  23     ventilated at any one time, we only had four beds.
  24     We were in a situation of then having to sometimes turn
  25     children away.

   1        More recently the unit has increased. We now have
   2     seven dedicated paediatric beds, so we are able to cope
   3     with the increases in numbers; but it did have resource
   4     implications for the whole unit, both for adults because
   5     they had a diminution in their numbers of beds and for
   6     paediatrics where we were not able to expand, so there
   7     was a down side to it.
   8   MR LANGSTAFF: Can I change the focus for a moment and ask
   9     you this. Is it the case that a good intensive care
  10     unit will make a significant difference to a child's
  11     survival -- either free of morbidity or survival?
  12   DR KEETON: Shall I start? I think that the answer is yes,
  13     it will make a difference. I think the most important
  14     thing about paediatric cardiac surgery is actually what
  15     happens in the operating room, and Mr Hamilton will
  16     comment on that, but it has always been my feeling that
  17     if you have a good operation you get a good result, but
  18     of course we do not always have the best substrate to
  19     work on. Some of these children have very complicated
  20     heart abnormalities which cannot be totally corrected
  21     and at best you are patching them up, doing some sort of
  22     palliative procedure.
  23        I think it is undoubtedly true that children can
  24     be rescued from being very sick post-operatively and can
  25     come through successfully with high quality intensive

   1     care, and if the intensive care was not of that quality
   2     then those children may not come through.
   3   MR HAMILTON: Yes, I would obviously agree with that. One
   4     of the changes we have seen over the last few years has
   5     been the availability in the operating theatre of
   6     echocardiography, either what we call epicardial or
   7     trans-oesophageal, which gives us a lot of information
   8     that what we have done is correct or is sufficient.
   9        Often, in situations where, for instance, in a
  10     relatively common condition like tetralogy of Fallot,
  11     where you are cutting muscle out of the heart to enlarge
  12     the outlet, then you want to cut the minimum muscle but
  13     you want to relieve the obstruction, so it is getting
  14     that balance. Having information in the operating
  15     theatre that you have resected enough, or not enough, is
  16     very valuable because then you can go and correct it
  17     there and hopefully that child will have a much shorter
  18     post-operative course, whereas if you leave a residual
  19     problem then inevitably they will struggle in intensive
  20     care.
  21        I think that will be one of the changes that
  22     we will see over the next few years as that becomes more
  23     widely available.
  24   DR KEETON: I think it has been available for some years.
  25     We have been offering epicardial echo initially, I think

   1     since certainly the middle 1980s. I suspect probably as
   2     early as 1983 we were going in with the plastic bag and
   3     the jelly to do on-table echos for the surgeons if they
   4     had doubts about the adequacy of the repair. Now
   5     we have trans-oesophageal of course. It is not quite
   6     routine, but certainly if the surgeon has any anxiety
   7     about the adequacy of the repair we would offer that
   8     service to the surgeon.
   9   MR HAMILTON: Absolutely, I agree, but being practical it is
  10     not always possible to have the consultant paediatric
  11     cardiologist in the operating theatre all the time.
  12   DR KEETON: No, that is right, but with appropriate junior
  13     staffing you can get somebody who has -- our resident
  14     has become quite experienced at echo and can certainly
  15     give a reasonable opinion. We do now try to have one of
  16     the paediatric cardiologists in the hospital at all
  17     times so that if there is doubt about something we can
  18     be called to go and advise.
  19   MR LANGSTAFF: Just taking this forward, for how many
  20     operations do you use trans-oesophageal?
  21   DR KEETON: I think it is the minority, I would say. We
  22     particularly use it for certain conditions like the
  23     repair of the atrioventricular septal defect, where one
  24     is left with some degree of atrioventricular valve
  25     regurgitation, so if the valve is likely to have some

   1     degree of leaking afterwards the surgeon may well want
   2     some quantification of that -- it is not totally
   3     quantitative, it is semi-quantitative -- to see how the
   4     repair has gone before finally closing the chest, and
   5     certain other procedures where we would be called in
   6     more regularly. I think overall it is probably no more
   7     than, as a guess, 20 per cent, say, 25 per cent.
   8     20 per cent.
   9   MR LANGSTAFF: For how long have you done that?
  10   DR KEETON: Only this last few years, probably the last four
  11     or five years, have we offered a sort of stats service,
  12     but for many years we have been available to be called
  13     if there is doubt for the epicardial echo.
  14   MR LANGSTAFF: Can you give us an idea of how many
  15     "many years" is?
  16   DR KEETON: As I said, I think we started offering it --
  17     when my colleague, George Sutherland, arrived to work
  18     with us in 1983, I think it was, we then got some decent
  19     echo equipment, and certainly from about 1983, 1984,
  20     onwards we were offering epicardial -- that is on the
  21     surface of the heart, the echo probe put on the surface
  22     of the heart in a sterile plastic bag at the end of the
  23     operation to see what was going on.
  24        The surgeons did not call for it that often but
  25     it was available. Similarly, in the post-operative

   1     intensive care unit I think there has been over this
   2     period a big growth in the frequency of echo assessment
   3     post-operatively. It is now, in our unit, routine that
   4     the patient gets a transthoracic echo on return from the
   5     operating theatre to the unit within the first few hours
   6     to assess cardiac function and then as and when required
   7     thereafter. Certainly every few days we are echoing in
   8     the post-operative ITU to assess the child's
   9     haemodynamics.
  10   MR LANGSTAFF: Pursuing the question of interoperative echo,
  11     how long has that been a feature of your own practice?
  12   MR HAMILTON: I think that has been quite a luxury in
  13     Southampton. I think the general picture around the
  14     country would be much later than that.
  15     Trans-oesophageal echo has only recently come in,
  16     particularly in the small babies where it is only with
  17     recent technology that probes have been small enough to
  18     get down the baby's throat. That is only really in the
  19     last few years.
  20        Certainly my own practice, if I am undertaking
  21     a procedure where there is specific information I want
  22     at the end, then I will arrange for that. It is much
  23     easier to put the trans-oesophageal probe down the
  24     throat before all the towels are placed for the
  25     operation, so if you can predict that in advance it is

   1     much easier.
   2   DR KEETON: I would agree with that and that is the way we
   3     do it as well. We are usually warned. The surgeon will
   4     say, "I am doing such and such a case today and I would
   5     like a TOE at the end, or an epicardial echo at the
   6     end".
   7   MR HAMILTON: If you go to these international meetings, the
   8     enthusiasts will stand up and say they do it in every
   9     case, but that is not the real world.
  10   DR KEETON: No, it is not.
  11   MR LANGSTAFF: Post-operative echo: how commonly has that
  12     been done over the years since 1984?
  13   MR HAMILTON: Again, I think the trend has been increasing.
  14     The equipment has got better. It is actually quite
  15     difficult, I think Barry would agree, to get really
  16     clear pictures in the first few hours after the
  17     operation, but obviously the earlier you can get
  18     information to tell you that you perhaps need to do
  19     something further surgically, the better the child is
  20     going to cope with that and the quicker recovery
  21     they will make. So, certainly we would have the same
  22     policy, but that has been relatively recent, the past
  23     four or five years.
  24   DR KEETON: Yes, I agree with you that the adequacy of the
  25     examination -- it may not be complete because of the

   1     difficulty with echo windows. The problem is that once
   2     you have opened the chest and you have a big plaster
   3     down the front of the chest, you cannot put the probes
   4     where you want to get the images. Also, the fact that
   5     you have separated the tissue layers means that the echo
   6     beam does not go through as well as pre-operatively, but
   7     we can usually get pretty good information.
   8        I think we also use it to guide us with how well
   9     filled the child is, what the ventricular function is
  10     like, even if we cannot actually get the Doppler
  11     gradients as precisely as we might like, but we can
  12     usually get good information from the post-operative
  13     echoes.
  14   MR LANGSTAFF: Again, how long have post-operative echoes
  15     been used, either at all or more routinely?
  16   DR KEETON: In Southampton it has been more or less routine
  17     since --
  18   MR LANGSTAFF: For how long?
  19   DR KEETON: Well, since we got a decent echo machine. I am
  20     going on memory here. I think we had a reasonably good
  21     echo in 1983 for imaging and we had colour, I think, in
  22     1989 or maybe 1990, so that sort of era. I think
  23     it would be true to say that either myself or my juniors
  24     would be wheeling the echo machine regularly into the
  25     intensive care unit to assess the children on the unit.

   1   MR LANGSTAFF: Is that a general picture would you say?
   2   DR MACRAE: Yes. I certainly have not practised intensive
   3     care at consultant level in a unit where echo has not
   4     been freely available. If I have had a concern about a
   5     patient, I have always been able to obtain a
   6     two-dimensional echo, and certainly from the early 1990s
   7     onwards colour flow Doppler echos in addition to that.
   8   DR KEETON: I think we got colour just a little bit before
   9     you did. We were quite pleased about that.
  10   MR LANGSTAFF: If then intensive care can make the
  11     difference in the way that you have described, what are
  12     the characteristics that distinguish a good intensive
  13     care unit from a not so good one?
  14   DR MACRAE: I think I can perhaps say something on this
  15     point. I think the first thing to say is that I agree
  16     with what has already been said, that most of what
  17     happens to children has already occurred in the decision
  18     to do a particular operation and the conduct of that
  19     procedure. It is perfectly possible for badly conducted
  20     intensive care to damage what might have been a good
  21     outcome if an incident had not occurred, but equally
  22     it is possible for good quality intensive care to
  23     nurture a borderline case through to a good outcome,
  24     either by preventing death or perhaps more importantly
  25     preventing morbidity, illness in survivors.

   1        I think adequate intensive care perhaps is dealing
   2     with problems when they arrive, but good intensive care
   3     is actually anticipating the problem and preventing it
   4     happening. That may be both at a patient-based level,
   5     clinical level, but also at a clinical management level
   6     by putting in place protocols for common intensive care
   7     procedures, for things like sedation and analgesia so
   8     that the unit's sedation policy is there for everyone to
   9     know and to use so that children do not suddenly wake up
  10     and pull out an essential piece of equipment that they
  11     are attached to, things like that.
  12        Okay, the adequate unit might notice that
  13     something has been pulled out and replace it and the
  14     child may come to no harm, but the good unit would
  15     actually prevent the incident occurring in the first
  16     place.
  17   MR HAMILTON: The other thing obviously in a good unit, in a
  18     paediatric unit, is involving the parents. I am sure
  19     Andrew will have something to say on this. I think that
  20     is one thing we have learned over the years, that
  21     parents are much more involved now in the post-operative
  22     period in intensive care and they are actually
  23     encouraged, I think, in most units to be involved in the
  24     care. That is something that has changed over
  25     the years. It was much more, I guess back in the 1980s,

   1     "You can come and visit your child at such and such
   2     time"; now the parents are there constantly, they are
   3     involved in the care, and that has been a big change
   4     over the years.
   5   MR DARBYSHIRE: What makes a good intensive care unit?
   6     I take on board all the things that have been said
   7     before by Duncan and Leslie. I think there is one issue
   8     and that is the teamwork that occurs within the
   9     intensive care unit. The better the team works, I think
  10     the more effective it can actually be. The better the
  11     interpersonal communication that goes on between the
  12     members of the team, the better the intensive care can
  13     be.
  14        In terms of outcome, I very much agree that to a
  15     large extent what happens in theatre dictates an awful
  16     lot of what happens in the intensive care unit. I think
  17     in intensive care you can support a patient through a
  18     return to function that may not have been there when
  19     they came out of theatre, and that may well allow the
  20     actual anatomical thing that has happened in theatre to
  21     work a little bit better. I think you can get them
  22     through that. But I also think there are certain
  23     patients that, no matter how good the intensive care,
  24     you cannot actually change what may well be an
  25     inevitable outcome. I think paediatric intensive care

   1     in itself is maybe better equipped to actually deal with
   2     that eventuality.
   3   DR MACRAE: I think you have touched on a good point there
   4     because I think good intensive care is doing what is
   5     appropriate in the best interests of the child towards a
   6     good outcome, but also knowing when to stop, when the
   7     point is reached where, no matter what is done and what
   8     invasive and painful and uncomfortable procedures are
   9     undertaken, the outcome is not going to be successful.
  10     That is clearly terribly difficult for all involved, but
  11     there are small numbers of patients where that occurs,
  12     even in the best units in the world.
  13   MR HAMILTON: On a slightly different tack, just to take it
  14     back a stage further, obviously what happens in theatre
  15     is important but so is the decision-making beforehand.
  16     If the team, and again it would usually be made as a
  17     team, decide to do an inappropriate operation or the
  18     wrong operation, or the child is not suitable for that
  19     operation, no amount of good surgery or good intensive
  20     care will change the outcome. I think the classic
  21     example of that is what we call the Fontan operation
  22     where a lot of the decisions are based on the
  23     pre-operative investigations. If your prediction that
  24     the physiology will work afterwards is wrong, then no
  25     amount of good surgery and intensive care will change

   1     that.
   2   DR KEETON: Yes, I agree. I think the point about involving
   3     the parents is a very important one and I think that is
   4     the mark of a good intensive care unit, where the
   5     parents feel well-informed.
   6        I think occasionally things can get a bit out of
   7     control down there and I do not want to make a big point
   8     out of this but you will get the occasional parent who
   9     is looking so much at the monitors and the figures and
  10     the fluid balance, and almost trying to dictate the
  11     treatment, and I find this quite a difficult area.
  12     I occasionally have to say to my parents, "Look, this is
  13     for the nurse and the doctors to do this. You have to
  14     look at the baby, hold his hand and be a parent and
  15     leave us to worry about the figures", because they can
  16     get really obsessed with the figures and it can make for
  17     very difficult management.
  18        I think it does need experienced nurses to give
  19     the parents enough information but not try to put the
  20     burden of decisions on to them. You may also want to
  21     comment on that.
  22   MR DARBYSHIRE: I think it is not just so much the giving of
  23     information, it is actually communicating with the
  24     parents. I think, in my experience, a lot of those
  25     issues where -- if you say the parents are obsessed with

   1     the monitors, obsessed with the heart rate, usually you
   2     find at some point there has been a breakdown in
   3     communication and that communication needs to be
   4     re-established. I think, again, you have to be
   5     sensitive towards the relationship between the parent
   6     and the child or the paediatric aspects of ITU.
   7   DR MACRAE: Certainly I recognise the situations that
   8     you are describing, and particularly that situation
   9     tends to arise in the more complex children who have
  10     been there for quite long periods of time. Very often
  11     conflicting messages are given, very often
  12     unintentionally.
  13        In a 24-hour period, a parent who is at the
  14     bedside for a substantial part of the time may meet 10
  15     or 15 people and they will all want to give good news
  16     and be supportive, but they all may say slightly
  17     different things. You have stressed the importance of
  18     communication and in that situation I find it
  19     particularly helpful to say to families, "I will talk to
  20     you each day and give you the definitive update and
  21     I would like you to come to me if you feel you need
  22     information in between those periods of time".
  23     Otherwise, the inevitable happens and something is said
  24     out of context, or misunderstood, and I think it is
  25     important that parents in that situation do have

   1     confidence in the ability of the nursing and medical
   2     teams to deal with things like the monitors and the
   3     fluid balance and therefore not feel that they have to
   4     worry about them themselves.
   5   MR DARBYSHIRE: I think there is an important issue as well
   6     in that, as you point out, it tends to be with the more
   7     long-term patient within the PICU environment that these
   8     communication breakdowns happen. The longer they are
   9     in, usually the more problems you have encountered along
  10     the way, and it is the dealing with those problems as
  11     they arise. As I say, if personnel change, slightly
  12     different emphasis is given in explanation and it can
  13     just raise the anxiety of the parents where they do
  14     start to worry an awful lot about what is going on with
  15     the child.
  16        I think one of the things I have seen from the
  17     development of an intensivist is that if you have the
  18     intensivists there -- in Liverpool we have three
  19     intensivists and usually for the long-term patients one
  20     of the intensivists says, "I will be the person who
  21     communicates with that particular family".
  22        It comes from just one person. Parents very much
  23     look towards the medical staff, the most senior doctor
  24     they can talk to, as the person that they are really
  25     going to listen to. In studies I have read that the

   1     nurses come second but it is the medical staff they
   2     really do seek reassurance, information and support from
   3     about the condition of their child.
   4   MR HAMILTON: I would agree entirely. I think this is
   5     something we have learned over the last few years in
   6     intensive care, that parents do often get what they see
   7     as conflicting information. It is the old example of
   8     whether a cup is half full or half empty. It is exactly
   9     the same thing but the parents will interpret it
  10     differently, and obviously the parents want to hear the
  11     good news. I think that identifying a person to be the
  12     communicator is the key.
  13        The other very controversial issue is whether
  14     parents should be there during the ward rounds, and this
  15     is something I have not resolved. The two issues --
  16     obviously the parents should be involved and you should
  17     not be discussing anything that you do not want to say
  18     to the parents, yet sometimes there are very difficult
  19     decisions to be made. You need to get a team view
  20     before you put that to the parents.
  21        The other issue, of course, is confidentiality for
  22     the other children who are around. It may be that one
  23     set of parents are there and the other are not, and they
  24     hear you talking about the other child and then they
  25     communicate with the parents, so you get into a real

   1     vicious circle.
   2   DR KEETON: I accept that point as well and for that reason
   3     we tend to hold our business ward rounds away from the
   4     bed and discuss strategy and management with the
   5     intensivists and anaesthetists, et cetera, away from the
   6     bed. Then someone will go and talk to the parents,
   7     usually someone fairly senior in the team, about what
   8     decisions have been made. The nurse will also know then
   9     precisely what to say to them.
  10        They look to the surgeon as well, I think, to keep
  11     them informed of the child's progress and also to the
  12     paediatric cardiologists to keep them informed of the
  13     child's progress, and I would certainly make a point of
  14     seeing a child's parents on a fairly regular basis,
  15     every few days at least if it is a long, protracted ITU
  16     stay.
  17   MR LANGSTAFF: You have not mentioned the involvement of any
  18     liaison nurse or anyone occupying that sort of role.
  19   DR KEETON: We have two specialist nurses who fulfil that
  20     role, both of whom were previous sisters on the
  21     paediatric intensive care unit and they now job-share
  22     the liaison nurse role. They play a very major part in
  23     communication with the parents, and also when the child
  24     goes home in maintaining that communication.
  25   MR LANGSTAFF: So the communication with the parents has to

   1     involve also communication between the team and the
   2     liaison nurse so that the liaison nurse is in a position
   3     to convey the information?
   4   DR KEETON: Yes, so one of them is always around and knows
   5     what is going on and will talk to the surgeon, the
   6     paediatric cardiologist, the intensivist, so that we try
   7     as far as possible to avoid any conflicting
   8     information. There needs to be consistency in what the
   9     parents are being told.
  10   MR HAMILTON: I could not agree more. I think this is a key
  11     role. We appointed our senior ward sister, I think
  12     about four years ago, to this role and she is there.
  13     Every family are different and they all need different
  14     levels of support and information. She is there and
  15     often she will spend the day in the ward with a family
  16     while the child is in theatre if she feels that is
  17     appropriate, but also just in communicating and
  18     providing support both before and after the operation at
  19     home, so I think that is a key issue.
  20   MR DARBYSHIRE: We have a very clear teamworking arrangement
  21     with our cardiac liaison nurses in the ICU. They work
  22     alongside the nurse in the ICU who is delivering care.
  23     I think most of the support actually comes from the ICU
  24     nurse, but the cardiac liaison nurse is aware of what
  25     has happened in the ICU and is very good at taking that

   1     information back down to the ward; more than what can be
   2     done in the handover, just the five or ten minutes when
   3     the patient is discharged from ICU. I think that is
   4     important because we have had experiences where parents
   5     are extremely anxious at the actual point where a child
   6     leaves ICU. I think that is an issue that we have tried
   7     very hard to address at Alder Hey. The step down in
   8     dependency on the amount of nursing time that is going
   9     to be spent with that patient has given rise to quite
  10     high levels of anxiety. That is where they move just
  11     down a corridor by a couple of blocks, so we can talk to
  12     each other. The nurses in both units can actually talk
  13     to each other about the patient quite easily.
  14   DR KEETON: You raised an interesting issue about stepdown
  15     care for the child. We have been trying to set up high
  16     care facilities so that we have a higher care area in
  17     the ward when they go back. It has proved difficult to
  18     persuade people of the need for those resources.
  19     Nursing budgets being what they are, it is quite
  20     difficult. In fact, in getting our liaison nurse as
  21     well, that was a major struggle to get that accepted as
  22     being a necessary post of appropriate grade of nurse to
  23     do that job. It is a vitally important job.
  24   MR HAMILTON: Certainly our approach was funded on our local
  25     charity.

   1   THE CHAIRMAN: Yes, I was interested in that matter of
   2     funding. Did you, in Southampton, seek to raise or tap
   3     into charitable funding in the absence of NHS funding,
   4     as Mr Hamilton reports?
   5   DR KEETON: Indeed we have, to a very large extent, such
   6     that we have a fund called the Heartbeat Appeal which
   7     has raised over œ3 million, or maybe even œ4 million
   8     now, to support the unit. That both employs certain
   9     members of staff but also contributes to the fabric and
  10     the equipping of the unit.
  11   THE CHAIRMAN: Could you give me a sense, both Mr Hamilton
  12     and yourself, as to when the decision was made that
  13     it would be desirable to have a liaison nurse?
  14   DR KEETON: I think you were a bit ahead of us, and I am not
  15     quite sure of the timing of our liaison nurse. Just
  16     give me time to think about it and I will come back to
  17     you.
  18   MR HAMILTON: Certainly in Newcastle our desire has been
  19     there for a long time. Actually putting that into
  20     practice -- and the way locally we have worked is that
  21     our charity, called CHUFF, will support projects on the
  22     basis that the hospital will then take over the funding.
  23      It is usually a three-year programme. We have done
  24     that with the ward social worker and with the community
  25     liaison nurse.

   1   MR DARBYSHIRE: In Liverpool they had dedicated cardiac
   2     social workers actually run by social services within
   3     the hospital, but they changed to a cardiac liaison
   4     nurse as social services re-organised what they were
   5     doing, but we used to have two excellent social workers
   6     who just dealt with the cardiac children coming into the
   7     supra-regional unit.
   8   MR LANGSTAFF: Can I turn to a different topic. We have
   9     looked, in a number of questions that we have raised, at
  10     the change between 1984 and 1995. I wonder if you can
  11     give us from your different perspectives an idea of the
  12     principal changes and developments in ICU or ITU care
  13     during that period and roughly when they may have taken
  14     place?
  15   DR MACRAE: Yes. I think there are probably a number of
  16     things that I could identify as having changed or
  17     evolved. Certainly electronic monitoring was becoming
  18     more sophisticated at the end of the 1980s, so in 1988,
  19     1989 the sort of present generation of electronic
  20     patient monitoring, microprocessor-based monitors, were
  21     coming into use. We talked earlier about the
  22     availability of transport monitoring equipment, and so
  23     on. That, again, coincided with the microprocessor
  24     revolution so we are now able to monitor pretty much any
  25     physiological variable much more easily and continuously

   1     to record trends and recall those trends.
   2        For instance, if one of our staff reports that a
   3     particular event occurred at 3.00 am, at 9.00 am the
   4     following day I can go back to the storage system and
   5     look almost minute-by-minute at what happened to the
   6     blood pressure or the oxygen saturation, which helps me
   7     as a consultant to perhaps work out what to them was an
   8     unexplained event.
   9        That availability has been very helpful and it
  10     gives much more information than a paper chart that is
  11     simply recording something every 15 minutes manually,
  12     because what happens between the points that are
  13     recorded on the chart is not available and you very much
  14     have to rely on the person who was there at the time
  15     noticing the chain of events.
  16        Of course, if they were so stressed by what
  17     they were hearing and seeing that they were not able to
  18     look at everything at once, then it may not be possible
  19     to get all of that information. So that certainly has
  20     been a big step forward.
  21        There have also been improvements in the
  22     technology used for renal replacement therapy, dialysis
  23     treatment, and many of the sickest children following
  24     heart surgery get temporary renal failure which needs to
  25     be treated with dialysis. The traditional method of

   1     doing that was peritoneal dialysis, and that probably
   2     still is the most common technique used, but it is not
   3     always possible to do that. A technique called
   4     continuous veno venous haoemofiltration, or CVVH, has
   5     been introduced during the 1980s even down to the
   6     smallest of babies really very successfully. That has
   7     revolutionised the -- we are only talking here about
   8     perhaps 1 per cent of the throughput of a unit, but
   9     nevertheless it has increased the repertoire of what
  10     we can offer to support these babies.
  11        There have also been other developments --
  12   THE CHAIRMAN: May I interrupt for a moment? Mrs Howard.
  13   MRS HOWARD: Just for some clarity around that, would that
  14     particular development in terms of dialysis require the
  15     constant attention of a nephrologist, or would it be
  16     something that the intensive care staff would do
  17     themselves?
  18   DR MACRAE: No, this is very much something which is
  19     intensive care-based. I think that is the difference.
  20     The alternative to peritoneal dialysis in times before
  21     the CVVH was haemodialysis which very definitely
  22     involved a nephrologist and was much more disruptive to
  23     both the unit and also physiologically to the patient.
  24   MR DARBYSHIRE: I think at Alder Hey the practice is to
  25     actually still involve the nephrologists in any patient

   1     with acute renal failure.
   2   DR KEETON: And in Southampton.
   3   DR MACRAE: Perhaps if I can continue, there might be one
   4     or two other things that have evolved. From the early
   5     1990s we have had available to us, and it is still
   6     viewed as an experimental therapy but nevertheless in
   7     post-cardiac patients it is becoming more and more
   8     accepted, the use of inhaled nitric oxide to treat high
   9     pulmonary artery pressures. My view is that that
  10     certainly has been a step forward.
  11        Finally I would like to highlight the increasing
  12     use of mechanical cardiac support which really was first
  13     introduced in a structured way in our Great Ormond
  14     Street practice in 1992. This is basically using a pump
  15     to support the failing heart when drugs fail to support
  16     it, allowing the heart to rest and hopefully recover.
  17        Having said that, this is a very technically
  18     exacting form of treatment and it probably still is not
  19     a standard of care across the whole country. It is
  20     available in units who, for other reasons, have that
  21     type of technology and that type of team available, but
  22     it is an area that is increasingly seeing attention from
  23     intensivists and surgeons who have these very sick
  24     patients.
  25   MR HAMILTON: Duncan has covered many of the issues there.

   1     We have talked before about the importance of what
   2     happens in theatre and I think from a surgical point of
   3     view there have been developments both in the perfusion
   4     machine, the heart/lung machine, and in the surgical
   5     side in better instruments, better magnifying glasses,
   6     particularly for small children, and of course that is
   7     one of the major factors. We are now operating on
   8     smaller children, doing hopefully corrective procedures
   9     at an earlier age, so the sort of patient going into
  10     intensive care has changed and obviously the challenge
  11     of looking after infants is much greater than looking
  12     after older patients.
  13        On the equipment side there have been changes in
  14     the ventilators. The ventilators that are used to
  15     breathe patients are much more sophisticated now and
  16     that, I think, has aided.
  17        We mentioned earlier about lines getting blocked
  18     off when they are moving back from theatre. We now have
  19     very sophisticated syringe pumps which will deliver
  20     highly concentrated solutions in very small amounts at a
  21     constant rate, and that has been a big advance.
  22        We mentioned the echoes before, giving us accurate
  23     diagnosis, and Duncan mentioned the assist devices which
  24     are coming into range. From a surgical point of view,
  25     bleeding can be a major problem of both morbidity and

   1     death after operation, and I think one of the changes
   2     over the years from the 1980s has been the more readily
   3     available blood products, platelets and fresh frozen
   4     plasma and things, which can help in breathing, and also
   5     a drug called Trasylol which came along in the early
   6     1990s, I guess. That has been a major breakthrough,
   7     I think, in terms of helping with bleeding.
   8        The other issue on drugs, as Duncan mentioned, is
   9     nitric oxide which I think has been the major
  10     breakthrough in the 1990s in terms of dealing with
  11     children who have very stiff lungs. They have a high
  12     resistance to blood flow through their lungs.
  13     Particularly in the atrioventricular septal defects that
  14     Barry mentioned earlier, that been a big advance there.
  15   MR LANGSTAFF: When did that begin?
  16   MR HAMILTON: The last couple of years, 1992, 1993, and
  17     it has only become more widespread and available in the
  18     last couple of years.
  19        One of the other causes of death and morbidity in
  20     intensive care is infection and I think we have had
  21     developments in the intravenous lines, the central
  22     venous catheters that we use are much more sophisticated
  23     now, and hopefully more resistant to infection, and also
  24     different antibiotics to treat infection when it does
  25     occur.

   1        I think in our own practice, and I think it would
   2     be widespread around the country, the microbiologist,
   3     the specialist in infection, would be much more actively
   4     involved in the intensive care team than they would have
   5     been back in the 1980s, so those as I see it are the
   6     major changes over the years.
   7   MR LANGSTAFF: Has anything changed in the management of
   8     arrhythmias?
   9   MR HAMILTON: Barry might wish to comment on that, but
  10     arrhythmias tend not to be too big a problem, I hope, in
  11     intensive care. Southampton have popularised the
  12     concept of cooling the patient as a treatment for
  13     arrhythmias which has been a big breakthrough.
  14   DR KEETON: We wrote that up some years ago, within the
  15     timescale I think that the Inquiry is interested in.
  16     The effects of cooling to control particularly
  17     junctional tachycardia is very successful. Also some
  18     new antiarrhythmic drugs have come along, but drugs in
  19     the post-operative period to control rhythm disturbances
  20     tend to depress myocardial function, so wherever
  21     possible we try to avoid them.
  22        We have more recently had involvement of
  23     specialist electrophysiologists to help us with things
  24     like overdrive pacing, to control the heart rhythm.
  25     Of course, Adenosine probably came on the scene during

   1     this timescale as well, to control supraventricular
   2     arrhythmias by blocking the atrioventricular nodal
   3     conduction, and that has helped a number of children.
   4        Obviously there was a lot of very good progress
   5     and developments during the time period you are
   6     studying.
   7        I think we should not gloss over some of the
   8     deficiencies that we encountered. There was a big
   9     problem, I seem to remember, during this period of
  10     recruiting and retaining appropriate nursing staff.
  11     I recall that during the supra-regional arrangements we
  12     met with the supra-regional services to highlight to
  13     them the difficulty of recruiting and retaining nursing
  14     staff. I think it got to such a state -- I know that
  15     I signed a letter to Mrs Thatcher about recruitment
  16     problems for paediatric intensive care nursing, which
  17     I think Jaro Stark initiated. Whether it got sent or
  18     not I do not know, but we were so desperate that we
  19     wanted involvement at high Governmental levels to try to
  20     improve what we saw as a major crisis in paediatric
  21     cardiac intensive care nursing. I cannot remember the
  22     year, I am sorry, but I could find out for you.
  23   MR LANGSTAFF: Again changing the topic a little, there is,
  24     we have heard, a risk of morbidity, particularly
  25     neurological problems arising out of either the

   1     operation or the intensive care beyond it. What are the
   2     principal causes of this and how can they be prevented?
   3   THE CHAIRMAN: While people are thinking about that, I think
   4     Mr Darbyshire just wanted to comment on the previous
   5     question.
   6   MR LANGSTAFF: I am sorry.
   7   MR DARBYSHIRE: Yes. I think changes in the Nursing
   8     Education Act actually happened during the Inquiry.
   9     I think there was some impact, although I would
  10     anticipate the impact was more felt on a general
  11     paediatric ward than in ICU, with the removal of student
  12     nurses from establishments.
  13        I think that, in terms of nursing developments and
  14     innovations, one underlying point of the whole thing is
  15     that there has been no real paradigm change. The things
  16     that I was first interested in in 1996, in nursing them,
  17     are still the same things I am interested in now.
  18     It has been a period of refining and developing the
  19     intervention, or modifying interventions that have
  20     actually happened. I agree with all the medical
  21     interventions that have gone on, that these have been a
  22     refinement of the management of problems that we had
  23     always been interested in really.
  24   DR MACRAE: I was not going to say anything else, but
  25     I actually agree with that. I do not want the Inquiry

   1     Panel to get the impression that the things that
   2     I described as being steps forward were overwhelmingly
   3     important. They have importance in particular areas,
   4     but I think what we have learned to do is use the simple
   5     tools that were available to us perhaps in a more
   6     focused way and we have become more artistic with the
   7     simple tools.
   8   MR DARBYSHIRE: I think the tools have got sharper as well,
   9     yes.
  10   DR MACRAE: I think I could conduct intensive care with a
  11     very limited armamentarium of drugs and some very simple
  12     equipment and still get good results, but undoubtedly
  13     some of the bells and whistles help.
  14   MR HAMILTON: Just on the point of your question on
  15     neurological complications, I think I gave you earlier
  16     the chapter from Mr Stark's book which has really been,
  17     if you like, the bible in paediatric cardiac surgery.
  18     Page 9/0027.
  19   MR LANGSTAFF:  INQ 9, page 27.
  20   MR HAMILTON: In the paragraph entitled there "Neurological
  21     Complications" he outlines the multifactorial -- you
  22     will see he goes through the list of the various things
  23     that might contribute. This has been one of our
  24     frustrations in trying to prevent this complication:
  25     there are so many different things that may cause it.

   1     The incidence varies depending on what report you read.
   2     I think you have the Kirklin and Barrett-Boyes book,
   3     although that deals with adults as well. He starts off
   4     his paragraph by saying:
   5        "Changes in intellectual performance do not occur
   6     after well conducted and uncomplicated cardiopulmonary
   7     bypass."
   8        There was a study done in Newcastle several years
   9     ago in adults that something like 60 per cent of adult
  10     patients after straightforward coronary artery bypass
  11     surgery will have a neurological problem if you look
  12     carefully enough for it. It is a very real problem and
  13     I think many of the changes are very subtle. Most,
  14     fortunately, resolve, but the whole question of
  15     neurological injury is a very difficult one and a
  16     complicated one.
  17        So when you come to talk about the actual
  18     incidence it is actually very difficult to put a figure
  19     on what that might be. It will also depend on the
  20     operation you are doing. For some of the operations we
  21     actually have to stop the circulation and for some
  22     operations we have to actually clamp the arteries that
  23     go to the brain, and obviously that is going to increase
  24     the risk.
  25   DR MACRAE: I think there has been a change, and this is

   1     partly commenting on the surgical bypass practice, there
   2     has been a change in the way that some surgeons have
   3     approached particular types of operations during the
   4     period that we are discussing. In particular, the use
   5     of cooling and circulatory arrest, where the heart is
   6     completely stopped during an operation, has perhaps
   7     become slightly less common. There was, I think, fairly
   8     recently -- certainly in the 1990s -- a randomised
   9     controlled trial conducted in Boston that compared that
  10     technique with a different bypass technique where the
  11     circulation was maintained in some way throughout the
  12     whole of the -- I think it was a switch operation.
  13        Certainly the early indications were that
  14     post-operative neurological problems such as convulsions
  15     were less common in the group of patients who had their
  16     circulation maintained compared to those who were cooled
  17     right down and had a period of circulatory arrest, yet
  18     up to that point circulatory arrest really had been
  19     viewed as probably the safest; safer than trying in
  20     these very small patients to maintain the circulation.
  21     That was, I think, a very important study that started
  22     to inform us about some ways that were better than
  23     others at managing these children.
  24        Having said that, there is inevitably a small but
  25     present incidence of neurological damage, and why that

   1     occurs, whether it is due to little bubbles passing into
   2     the circulation and then into the brain, whether it is
   3     due to low blood flow, low blood pressure, we never know
   4     for sure. It is very unusual to know in a particular
   5     case why an event occurred. We do know that the
   6     incidence is greater following more complex surgery and
   7     longer periods on the bypass machine in general are
   8     associated with a higher risk of a problem being
   9     detected in the post-operative period, but, even so,
  10     it is not possible in the middle of an operation to say,
  11     "This is going to cause a problem". That is very
  12     unusual. Occasionally technical problems do happen when
  13     they are raised, distinct concerns, but not too often.
  14   DR KEETON: I think the other change that has occurred
  15     during the timescale that you are studying is the
  16     awareness that certain periods of circulatory arrest
  17     were not safe. Conventional teaching I think in the
  18     early part of the period that you are studying was that
  19     you could arrest the circulation at low temperature for
  20     about an hour without sustaining major neurological
  21     damage, but that time period came down and I think more
  22     recently people said 45 minutes was perhaps safe but
  23     periods longer than that were not safe.
  24        There were some quite upbeat reports in the late
  25     1980s about the lack of neurological complications of

   1     total circulatory arrest and hypothermia, suggesting
   2     that it was a very good technique, but a lot of those
   3     reports, or some of those reports, had not done detailed
   4     neuropsychiatric testing like the Newcastle group did on
   5     adults.
   6        I think when more detailed studies were done on
   7     children it was found that there was a significant
   8     incidence of neurological complications occurring with
   9     that technique.
  10   MR HAMILTON: The technique of what we call deep hypothermic
  11     circulatory arrest is where you cool the baby right down
  12     to maybe 18 degrees Centigrade and at that temperature
  13     the theory is that the body actually does not need a
  14     circulation, like the people we hear of getting found in
  15     the ice, or whatever, and recovering, so you can turn
  16     the pump off. It is a compromise. The clearer the
  17     surgical field that the surgeon has, the more accurately
  18     they can do the operation. That is the principle. So,
  19     if you can get rid of all blood in the surgical field,
  20     you should hopefully be able to do it more accurately
  21     and faster, but it is getting this compromise.
  22        Barrett-Boyes, the other author of the book
  23     I mentioned earlier, made his name, if you like, on
  24     popularising this technique and it was the standard
  25     practice. As Barry said, the time has come down. Now,

   1     in teaching our registrars, we would say as short a time
   2     as possible, or 30 minutes, 45 minutes, depending on who
   3     you ask.
   4        I find it fascinating because, having said that,
   5     the Norwood operation, which is a very complicated
   6     operation for babies who have been born with what we
   7     call hypoplastic left heart syndrome, that has come into
   8     popularity over the last few years and to do that
   9     operation you have to have a significant period of
  10     circulatory arrest, so the time is actually going back
  11     up again of what is allowable because the Norwood has
  12     become a popular operation.
  13        Over the years you find these controversies and
  14     conflicts, and what is accepted wisdom at one point in
  15     time may be completely different in the next era.
  16   DR KEETON: I may have some data, I think, from the text
  17     from the Barrett-Boyes book, but there were a couple of
  18     publications from this country on incidents of
  19     neurological deficit using circulatory arrest.
  20        My colleague David Dickinson wrote a paper in
  21     1979. He looked at IQs in these children and found
  22     that -- I think it was 89 per cent of them were within
  23     the normal range IQ-wise. Then Christopher Lincoln, a
  24     surgeon from Brompton, did a study in 1983 and he did
  25     find significant differences in -- I think it was the

   1     development of the children who had been arrested for
   2     more than 50 minutes as opposed to those that arrested
   3     for less than 50 minutes. There were significantly
   4     lower IQs in those that had been arrested for more than
   5     50 minutes. It was at that sort of time that the
   6     anxiety really began to grow about this technique.
   7   MR LANGSTAFF: Can you tell me whether that study was
   8     controlled for the nature of the operation because it
   9     might be suggested that longer time on bypass may be a
  10     consequence of a more serious condition which may itself
  11     lead to a poorer prognosis so far as neurology is
  12     concerned.
  13   DR KEETON: What you say is absolutely true and I think the
  14     study just looked at the survivors of hypothermic arrest
  15     and I do not think it subdivided them at the time.
  16   DR MACRAE: So far as I am aware, the Boston study is the
  17     only really large randomised controlled series that has
  18     looked at outcome.
  19   DR KEETON: Do you remember when that was published?
  20   DR MACRAE: About 1992. It was a New England Journal
  21     paper.
  22   DR KEETON: So it was during this timescale that this
  23     awareness came that it probably was not quite so safe as
  24     we thought it was. But I have to say that the incidence
  25     of neurological complications did remain quite low

   1     provided the patient had not had some devastating
   2     occurrence like a cardiac arrest, or obviously the
   3     incidence of such complications that went up.
   4        I think in the old days we used to see more
   5     patients with choreoathetosis, abnormalities of
   6     movement, and it was thought that the basal ganglia,
   7     which is the area in the brain that produces that sort
   8     of movement, was particularly vulnerable to hypoxic
   9     injury, but that seems to be much less now that the
  10     newer techniques of bypass have been used. We seldom
  11     see it nowadays.
  12   MR HAMILTON: One of the other things I forgot to mention
  13     when we were talking about changes in intensive care was
  14     some work done at Great Ormond Street on what we call
  15     modified ultrafiltration. One of the major things we
  16     see post-bypass is the tremendous fluid shifts in fluid
  17     from one part of the body or one compartment of the body
  18     to another, and that in itself can lead to neurological
  19     problems. By undertaking this technique in theatre,
  20     filtering the patient at the end to try to get rid of
  21     some of the extra water that naturally gets held on in
  22     the body, you can hopefully reduce neurological
  23     complications amongst other benefits. That is one area
  24     that we hope may improve things, but that was just the
  25     last few years. That was about 1992, 1993.

   1   MR DARBYSHIRE: I think within ITU there have been certain
   2     things in nursing practice that have changed that have
   3     tried to reduce the risk of things like air emboli: in
   4     IV drug administration, the use of in-line filters,
   5     which will filter both bacteria and air from lines.
   6     Although you do not know where a neurological sequelae
   7     comes sometimes in an ICU patient, it may well have
   8     happened in theatre, but if they are sedated for four or
   9     five days you can never be too sure exactly what has
  10     happened.
  11        In nursing there have been various things in
  12     practice that have tried to lower the risk of delivering
  13     air emboli into children.
  14   MR LANGSTAFF: Sir, would that be a convenient moment, it is
  15     now just coming up to 12.30, to take perhaps a half hour
  16     break for some lunch?
  17   THE CHAIRMAN: Yes, shall we do that and reconvene therefore
  18     at one o'clock?
  19   (12.30 pm)
  20             (Luncheon adjournment)
  21   (1.10 pm)
  22   MR LANGSTAFF: We began this morning talking about the
  23     importance of transfers and looking at transfers locally
  24     after surgery and into intensive care. The skills no
  25     doubt collected with a transfer also apply to the

   1     pre-operative as well as the post-operative stage, do
   2     they?
   3   DR MACRAE: Yes. I presume from that, you are referring
   4     perhaps to transfers from another hospital where a child
   5     presents to the regional surgical unit; is that
   6     correct?
   7   MR LANGSTAFF: Yes.
   8   DR MacCRAE: This is an area that I have had a particular
   9     interest in over the years, and when I was a fellow
  10     training in paediatric intensive care in Australia,
  11     I was fortunate to work in a unit which had an
  12     established paediatric retrieval team and the concept of
  13     that, really, is delivering a rapid response intensive
  14     care bed, so they would ship a paediatric intensive care
  15     doctor and nurse with portable equipment to the site
  16     wherever it was that a child had become critically ill.
  17     I am not talking about the roadside, but a local
  18     hospital.
  19        Then the idea was to spend time stabilising the
  20     child and then return to the children's hospital with
  21     the child already undergoing intensive care of almost
  22     the same standard as that which would be delivered had
  23     the child presented immediately to the children's
  24     hospital.
  25        That was well-established by the late 1980s in

   1     Victoria in Australia, and other parts of Australia. In
   2     many ways, a state which is geographically of a similar
   3     size to the UK.
   4        However, in this country at that time I am aware
   5     of only two established paediatric transport teams,
   6     I think one in Liverpool which Andrew might comment on
   7     and one in Glasgow, providing a similar sort of
   8     service. There had been similar services for new-borns,
   9     but perhaps less well structured in most parts of the
  10     country than the service I described in Australia.
  11        We introduced a transport service at Great Ormond
  12     Street in 1992 with a limited remit and no additional
  13     resources, really on using a sort of -- we felt that we
  14     had to do it, we should do it. We led the way on that.
  15     It was incredibly successful in the sense that it is
  16     received by people at referring hospitals, who were very unhappy
  17     at having to deal with a critically ill child and they
  18     are very grateful for the assistance that sort of
  19     service can provide, but logistically, it is enormously
  20     costly, and the Great Ormond Street service is now
  21     dealing with 600 or 700 of these retrievals per year,
  22     not all cardiac patients, but that is a huge number.
  23     This is an area that has been highlighted in the various
  24     reports, including the framework document that came out
  25     in that 1997.

   1        So now health authorities all around the country
   2     are commissioning paediatric retrieval as part of their
   3     package for the provision of intensive care. But at the
   4     time of the Inquiry, really there was a very sporadic
   5     provision of paediatric and indeed to an extent expert
   6     neonatal retrieval services right across the country.
   7        That is certainly a very brief summary of the
   8     position.
   9   MR LANGSTAFF: We know from other evidence before this
  10     Inquiry that there were occasions when children were
  11     transferred some distance, not to the nearest
  12     supra-regional centre but to others.
  13        In Great Ormond Street, you, I think, for
  14     instance, received quite a number of referrals from the
  15     area which would geographically be served by Bristol.
  16   DR MACRAE: Certainly at the beginning of my appointment
  17     there, going back to 1989, we certainly had
  18     a recognisable practice referred from South Wales.
  19     I was interested that we received those patients when
  20     there was a centre closer to those patients' homes.
  21        I do recall in my naivety asking a group of my
  22     cardiological colleagues why that was, and I think the
  23     answer I received was perhaps some quizzical looks and
  24     then what at the time I interpreted as perhaps a typical
  25     Great Ormond Street, "we are better than them" sort of

   1     answer, which is, "we are better than Bristol" and it
   2     was really that sort of level. At the time perhaps
   3     I did not pay too much attention to it. Clearly in the
   4     light of subsequent events, one could look back and say
   5     that that was a reflection of perhaps professional
   6     anxiety based on, I do not know, perhaps rumour and
   7     hearsay, perhaps a feeling that perhaps the results for
   8     these children might be a little better if they were
   9     referred.
  10   MR LANGSTAFF: So what was relayed to you, albeit
  11     second-hand through the cardiologist at Great Ormond
  12     Street, was the sense, was it, that there was a balance
  13     to be struck between travelling a distance with the
  14     risks that implies and the chances of having better
  15     surgery?
  16   DR MACRAE: I think most of the patients who came to us
  17     came as semi-elective or non-emergency referrals. They
  18     had been assessed, I think at that time one of our
  19     cardiologists actually did a clinic in Cardiff, so some
  20     of the patients were actually referred to that clinic
  21     and then came if they required investigation or surgery.
  22        I am less sure that there were numbers of acute
  23     referrals, ventilated babies and so on. I think the
  24     patients I am referring to were probably mainly perhaps
  25     slightly older and slightly less acutely ill.

   1   MR LANGSTAFF: So not the sort of patient that might be
   2     expected to suffer particularly during a transfer?
   3   DR MACRAE: No. Again, I do not think you should
   4     necessarily assume, or we should necessarily assume that
   5     a patient who travels a longer distance is necessarily
   6     disadvantaged by that. In other areas of my intensive
   7     care practice I have moved patients from large
   8     distances, all over the country basically, as far north
   9     as Liverpool and Newcastle for special treatments, in
  10     transfers that have taken one or two hours even by air.
  11     I think it is possible to do that, provided they are
  12     done with a competent pair of hands and appropriate
  13     equipment.
  14   MR LANGSTAFF: In Southampton, you again would have
  15     a problem of distance. Again, we know that there were
  16     a number of children referred to Southampton who might
  17     more naturally, in terms of geography, have gone to
  18     Bristol during the years of the Inquiry.
  19   DR KEETON: There were quite a few centres -- I will give
  20     you some background about the Welsh situation. When
  21     Dr LG Davies died, who was the cardiologist who did the
  22     paediatric cardiology in Cardiff prior to the
  23     appointment of paediatric cardiology services there, we
  24     were asked as well as Great Ormond Street to cover his
  25     clinics and my colleague, initially George Sutherland

   1     and then myself, and Dr Lance Fong who then joined me,
   2     regularly did clinics in South Wales, in Cardiff, for
   3     a period of years in the middle 1980s. We alternated
   4     with Dr Philip Rees from Great Ormond Street. So we
   5     were providing outpatient services to Wales and getting
   6     quite a number of patients coming in.
   7        We did also have the odd emergency transfer, but
   8     very few emergency transfers. It was mainly elective
   9     work.
  10        However, we also gave a service to various parts
  11     of the South West, particularly to Plymouth and to
  12     Yeovil, which were within the South West region and
  13     I suppose conventionally would have been expected to use
  14     the Bristol centre.
  15        I think it sort of grew. When I was appointed in
  16     1978 to Southampton, I had been the senior registrar at
  17     Brompton. I therefore got some contacts with
  18     paediatricians out in the West Country. They had been
  19     using Brompton for their referrals from Plymouth for
  20     some years, I understand, and when Brompton was full,
  21     they used to phone me. I had been the senior registrar
  22     talking to them previously. Two of the Plymouth
  23     paediatricians -- I think it was subsequently -- were my
  24     senior house officers when I was a senior registrar, so
  25     I knew them personally. So there was a personal element

   1     to it as well as any other things to which Dr Macrae
   2     has alluded.
   3        I started going down to do clinics in Plymouth
   4     very shortly after I was appointed. When Dr Gibson died
   5     or retired from the Brompton, I took over his practice
   6     as well as the practice I had developed.
   7        So there has been a long-standing relationship
   8     with Plymouth for something like 20 years.
   9        I think that they chose to use us because of the
  10     service that we offered, which was a complete service,
  11     a service with a paediatric cardiologist going down to
  12     do combined clinics with the paediatrician and involved
  13     teaching their juniors and medical students; also the
  14     ready availability for us to discuss any problems they
  15     might have and to accept their patients promptly and
  16     communicate with them efficiently and send
  17     documentation. I like to think that they were using us
  18     for positive reasons, that we were giving them good
  19     service. I think I had the same sort of information as
  20     Dr Macrae has alluded to, that I think it was
  21     a perception that Bristol was perhaps not the best and
  22     that other centres were better. That is why people sent
  23     them to us.
  24        The Yeovil clinic was slightly different. I used
  25     to do clinics in Dorchester, where the paediatrician

   1     from Yeovil would bring his patients down to Dorchester,
   2     and that clinic got so big I was there until late at
   3     night, seeing patients. We decided we would have to
   4     split the clinic, we could no longer receive Dorchester
   5     and Yeovil patients within the same clinic, so I started
   6     going to Yeovil to do clinics. That was principally the
   7     Dorset patients we regarded as living within our
   8     section. As times went on, the fact we were giving
   9     a regular clinic every month, we perhaps got more and
  10     more of the referrals that perhaps lived in Somerset and
  11     drained into Yeovil. They sent them rather than the
  12     Dorset patients. So that grew, that side of the
  13     service. Again, I think they chose to use us because of
  14     the service we were giving.
  15   MR LANGSTAFF: I cannot let that last answer pass without
  16     asking you a little more about the perception that
  17     Bristol was not the best, that is the way you put it.
  18        Did you understand from any comment made to you by
  19     any other doctor any basis for that, or not?
  20   DR KEETON: I am not aware of any particular event, of
  21     someone telling me that the results were worse, except
  22     for one exception that I can recall, that I did have
  23     shared with me confidentially the results of the Society
  24     of Cardiothoracic Surgeons of one year. They were
  25     anonymised returns, but it was possible, because we knew

   1     the number of cases we had done in Southampton and
   2     I knew what our mortality rate was for cardiac surgery,
   3     we could pick out from this chart which one Southampton
   4     was and we were quite pleased that we had one of the
   5     lowest mortality rates on that chart and we were one of
   6     the smallest centres.
   7        From that chart we would see there were certain
   8     big centres, which would have to be, we assumed, Great
   9     Ormond Street, I suppose Birmingham, Brompton,
  10     Liverpool, they were the centres that would be bigger
  11     than us, and we saw us, so we knew there were some other
  12     smaller centres. There was one centre that had
  13     a significantly higher mortality rate on its bar chart;
  14     we did not know which centre it was, but the assumption
  15     was -- they were not labelled so I did not know which
  16     bar referred to which hospital, but there was an
  17     anxiety, I have to say, amongst the profession that some
  18     centres were not performing as well as others.
  19   MR LANGSTAFF: This question began -- I am sorry, you were
  20     going to add something?
  21   DR KEETON: I was going to give you some of the background
  22     to it. When the supra-regional services were set up in
  23     1984, there had been quite a bit of discussion
  24     previously. There had been a report -- let me get my
  25     facts right -- if I remember from the British Paediatric

   1     Association, it must have been from the late 1970s, and
   2     then there was the London Health Planning Consortium
   3     which did a report in the early 1980s, and when they
   4     were discussing the allocation of supra-regional
   5     centres, I did attend some of those meetings, and
   6     I recall that prior to the setting up, there were eight
   7     centres that had been nominated for supra-regional
   8     designation, and then my next recollection is that the
   9     Regional Medical Officers commissioned a report. I had
  10     some personal knowledge of this because the lady who did
  11     it came round to visit me and I gave her some help in
  12     the data, the statistics from Southampton.
  13        Following that Regional Medical Office report,
  14     there were then 9 centres and that was the point at
  15     which Bristol was added on, I think in 1984, to the
  16     supra-regional list.
  17        I was not aware at that time that there was any
  18     wide knowledge of what the results were in a particular
  19     centre. I think most centres did not have the data. In
  20     Southampton we had very good data, we had a clerk
  21     collecting our paediatric cardiology surgical work very
  22     diligently and carefully, so we knew precisely what our
  23     mortality rates were for any particular diagnosis and
  24     still do from the period 1972 to date, every patient is
  25     logged and is on the computer. So we have very good

   1     data, but I think we are one of the few centres that has
   2     that sort of data. I do not think it was widely known
   3     what the results were.
   4   MR LANGSTAFF: So your understanding was that the view of
   5     the profession, before the RMOs had their meeting, was
   6     that essentially Bristol was not a natural candidate for
   7     supra-regional status and it became one following that
   8     meeting?
   9   DR KEETON: Yes. It led to some correspondence between
  10     members of my group, my surgical colleagues and the
  11     Regional Medical Officer, and I can recall his letter
  12     very well, saying that he thought that centres were
  13     based round people's expertise and not round railway
  14     timetables and that the geography was not an issue, that
  15     the centres should be designated according to their
  16     results.
  17        There were discussions then with the
  18     supra-regional services about audit of results.
  19     I attended each year the meeting of the department of
  20     the Supra-regional Services Committee, and a member in
  21     each of the hospitals was there to present any problems
  22     that they had and what their results and things had been
  23     from the previous years, and I remember at those
  24     meetings we were calling then for the setting up of
  25     a country-wide audit on the results of paediatric

   1     cardiac surgery, but it never really got off the ground,
   2     it was never funded.
   3   MR LANGSTAFF: This was back when?
   4   DR KEETON: It would be in the early days of supra-regional
   5     funding. It must have been in the middle 1980s.
   6        I have digressed a bit, I am sorry. I was just
   7     trying to give you some of the background as to what my
   8     knowledge was of the state of affairs of paediatric
   9     cardiac surgery in the country at that time.
  10   MR LANGSTAFF: And this line of questioning arose because
  11     I was interested in the extent to which the transfer of
  12     the child, the distance the child travels for treatment,
  13     whether it is elective surgery or more importantly,
  14     perhaps, in the case of an urgent surgery, does, or is
  15     likely to do, any significant damage to the prospects of
  16     that patient.
  17   DR KEETON: We have gone down the same line as Great Ormond
  18     Street. We now have a pick-up team. It is obviously
  19     very much better now than it used to be.
  20        I think the relationship between my paediatricians
  21     who were referring patients to me was such that I was
  22     usually available to discuss the management of the
  23     child, the overall management of the child prior to
  24     transfer and during transfer, so we discussed the
  25     questions of whether to start a prostaglandin infusion

   1     on the child, having discussed the likely diagnosis,
   2     having the results of the chest x-ray, echocardiogram
   3     and blood gases, how most safely to transfer that child,
   4     whether the child could be safely ventilated. I think
   5     the children could be transferred over large distances
   6     reasonably safely, obviously not as safely as now when
   7     the intensivist goes out with the patient to bring them
   8     in, but the paediatrician would sometimes travel with
   9     the patient or the most senior members of the paediatric
  10     staff could travel with the patient, and often an
  11     anaesthetist would travel with the patient as well, if
  12     the patient was being ventilated. Sometimes that would
  13     be a consultant anaesthetist.
  14        So every effort was made to transfer the patient
  15     as safely as possible, bearing in mind the distances.
  16     It is a long way from Plymouth to Southampton, 150
  17     miles.
  18   MR LANGSTAFF: I am more interested not in the effort being
  19     made but in the results. Is what you are saying that
  20     you have no evidence that suggests that the distance was
  21     any significant factor?
  22   DR KEETON: I think any travelling is obviously a danger
  23     period to a baby. I think once you have actually got
  24     everything set up and you are in control in the
  25     ambulance, the difference between two hours and

   1     three hours may not make that much more difference. It
   2     probably does not make much difference to the outcomes.
   3     If the baby was well enough to get through a journey of
   4     two hours, it was probably well enough to get through
   5     a journey of four hours.
   6   MR LANGSTAFF: Mr Darbyshire?
   7   MR DARBYSHIRE: My impression of transporting patients from
   8     outlying hospitals into the cardiac centre, again, as
   9     Duncan said earlier, depends on whether you had
  10     a transport team or not. Prior to 1994, the cardiac
  11     unit itself did not actually utilise what was the
  12     general intensive care's transport service. We were
  13     very much reliant on the referring hospital transferring
  14     them in.
  15        I always considered when I worked in the cardiac
  16     wards, which would be the first port of call, that it
  17     was who brought them over that was probably the most
  18     important thing on the condition that they actually
  19     arrived in. If it was a very junior member of staff
  20     from the referring hospital, on their own with
  21     inadequate equipment in the ambulance, we used to get
  22     babies who needed resuscitation once they actually
  23     arrived on the unit. If we had more senior staff with
  24     the right equipment at the time in the ambulance, then
  25     they used to arrive in general in a much better state.

   1     Taking on board what Dr Keeton said, usually there is
   2     some discussion pre transfer about whether to start
   3     prostaglandin, whether the child would actually need
   4     intubation et cetera, but it would really depend on who
   5     did the transport rather than the distance they came.
   6   MR LANGSTAFF: This chimes with views given to us yesterday
   7     by Professor de Leval and Mr Stark, that children coming
   8     from Bergen in Norway to Great Ormond Street might often
   9     arrive in a much better condition than children coming
  10     up the road from Luton, simply because of the quality of
  11     the care they had had during the transfer process.
  12        I was going to invite you to comment on that, but
  13     I see I already have two nods from both Mr Hamilton and
  14     from Dr Keeton.
  15   MR HAMILTON: I think the experience in Perth in Australia
  16     at the moment, where they do not currently have
  17     a paediatric cardiac surgeon, they transfer patients
  18     4,000 miles, something in that order, to Melbourne and
  19     they have no problems. I do not think distance is in
  20     issue.
  21   MR LANGSTAFF: What about transfer, bringing it closer than
  22     Luton is to London, 10 minutes down the hill from
  23     a Children's Hospital to a Royal Infirmary?
  24   DR MACRAE: I think the process is the same: there needs to
  25     be just as much preparation to undertake a 10 minute

   1     transfer as there needs to be to transfer a child
   2     hundreds of miles. The preparation, the stabilisation,
   3     packaging, loading safely into the vehicle and so on, is
   4     exactly the same whether or not the distance is 100
   5     yards or 100 miles.
   6   MR LANGSTAFF: So the risks are there, but they are
   7     avoidable?
   8   MR DARBYSHIRE: I would also imagine you had much more time
   9     to stay where you were, you did not necessarily have to
  10     go. If things were not working out before you did the
  11     transfer --
  12   DR MACRAE: The risks of long transfers are mainly down to
  13     inadequate preparation. If a child is being transferred
  14     on a four-hour journey and the ambulance is only
  15     equipped with two hours of oxygen supply and then they
  16     notice that halfway there and have to divert to another
  17     local hospital and wake up the porter and get another
  18     oxygen bottle, or if the batteries on their syringe pump
  19     only have a duration of life for two hours when they
  20     need them to work for four hours and the infusion stops,
  21     this is a problem. These are avoidable factors, as is
  22     a child cooling down because it is not adequately
  23     protected from cold, by being wrapped up. As are things
  24     like secretions building up in a tracheal tube because
  25     there has been inadequate humidification. These are all

   1     things that in the present age transport teams are
   2     trained to address, but I think it is fair to say that
   3     across the country, 10 or more years ago many of these
   4     issues received scant attention, and I am certainly
   5     aware of transport over relatively short distances that
   6     was conducted very poorly because of those failures.
   7     But, as I say, there were very limited facilities for
   8     the specialist types of transfer that we can undertake
   9     today.
  10   MR LANGSTAFF: Before the break I was asking about risks of
  11     neurological complications and I think the reflection
  12     that you were giving in answers was that no-one may be
  13     able to say necessarily whether they come from the
  14     surgery or the post-operative care, but they are there,
  15     and real.
  16        What I want to explore now is the question of how
  17     one addresses risks with parents both in terms of those
  18     risks pre-operatively, and in terms of what one says to
  19     the parent about the risks of post-operative care.
  20        It will lead ultimately to, I hope, a discussion
  21     with you about how one breaks the news if it looks as
  22     though the worst is going to happen or if indeed it does
  23     happen.
  24   THE CHAIRMAN: Just while you are all reflecting on that
  25     question, Mrs Howard wanted to ask a question about the

   1     point you are about to leave.
   2   MRS HOWARD: It is, I hope, germane to the point. It is
   3     more about something we heard yesterday, about some of
   4     these very sick babies and being ideally prepared in the
   5     ICU prior to operation.
   6        I wonder if any members here have any comments
   7     about pre-operative management of children in areas
   8     remote from the intensive care, and I am particularly
   9     interested in for example where children are having to
  10     be prepared in one site and then transferred to another
  11     site direct to theatre.
  12   DR MACRAE: I think if one defines the need for intensive
  13     care as a need for mechanical ventilation, which is
  14     probably the simplest definition, then I would say,
  15     provided ventilation was not required, there is no
  16     reason why a child cannot be prepared very safely for
  17     surgery in a non-intensive care environment, possibly
  18     a high dependency unit or a high dependency room off
  19     a paediatric ward. But of course it all depends on the
  20     skill of the team who are preparing that child. It may
  21     be that there is no adequate skill, medical or nursing,
  22     on the ward, in which case the place of safety might be
  23     the intensive care unit, even if the child does not
  24     require ventilation.
  25   MRS HOWARD: I wonder if Mr Darbyshire has any comments

   1     about maybe the wider aspects of care in this situation?
   2   MR DARBYSHIRE: In what respect?
   3   MRS HOWARD: In terms of pre-operative care and management
   4     of the child, and perhaps family, in these situations.
   5   MR DARBYSHIRE: I think in my experience we have actually
   6     admitted children to the ICU from the cardiac wards in
   7     order to prepare them for surgery. Most recently they
   8     have been may be non-intubated hyperplastic left hearts
   9     who may well not really like the induction of
  10     anaesthesia at the start of the procedure, so we do it
  11     the night before so you can maybe get them over the
  12     little wobble and send them to theatre in a better
  13     state. I have seen that before.
  14        It is dependent on the child's condition as to
  15     whether they will actually come up to the ITU, in my
  16     experience. If they deteriorated on the ward to the
  17     extent where they required mechanical ventilation, they
  18     automatically become an intensive care patient, in which
  19     case they will come up to the unit.
  20        In terms of the preparation of the parents and
  21     families, it has been the long-standing practice at
  22     Liverpool that we run a pre-operative visit to the
  23     intensive care unit so the parents and children can
  24     actually see the environment they are going to come
  25     into, and maybe meet some of the staff that are going to

   1     look after them. I think that practice has been in
   2     since the mid to late 1980s, both at the Commercial
   3     Street site and the Alder Hey site.
   4   MRS HOWARD: Thank you.
   5   MR LANGSTAFF: Can we go to the question of telling parents,
   6     and perhaps in the case of older children, patients of
   7     the risks, both before and after operation?
   8   DR KEETON: Shall I start, as a paediatric cardiologist?
   9        We would sit with the parent and the child and
  10     explain the need for surgery, or our advice that surgery
  11     may be required. I think that the consent process has
  12     matured over recent years. I think that the population
  13     has changed in the amount of information that parents
  14     now request, and I think what I say today may be rather
  15     more detailed than I might have said 10 or 15 years ago
  16     to parents, particularly in terms of spelling it out
  17     more precisely. I think that things like this Inquiry
  18     have highlighted to the medical profession the need for
  19     more detail perhaps in informed consent.
  20        I had some experience of this in America, where
  21     they were very keen on detailing every possible
  22     complication that could possibly occur of every
  23     procedure that was done and off-loading the whole of the
  24     risk on to the family. I think in England in the early
  25     days of practice, we were perhaps not quite so explicit

   1     about things: we discussed risks, the possibility that
   2     things may go wrong, but we did not particularly spell
   3     out each individual complication which might occur.
   4        I think things have evolved a bit now, we have to
   5     give more detail, but with any family I would sit down
   6     and have a conversation with them about the proposed
   7     operation before they actually saw the surgeon,
   8     sometimes with the surgeon. I will explain to them that
   9     all forms of cardiac surgery inevitably carry some
  10     risks. We cannot do these procedures without there
  11     being some risk, the risk of death or of complications
  12     occurring.
  13        I would give them a broad overall estimate of the
  14     risk and then I would be more specific about the
  15     particular lesion that we were about to treat, and try
  16     and give them some sort of idea of how severe I thought
  17     that risk was. So, for example, a child undergoing
  18     a simple ventricular septal defect closure, I would say
  19     "You understand there is a risk in this sort of
  20     operation, things can go wrong in cardiac surgery. In
  21     your particular child, I would think that the risk would
  22     only be of the order of 1 or 2 per cent, or less,
  23     hopefully zero", and we say things like "We have not had
  24     any problems with this particular operation in the last
  25     X years so we would be confident that your baby would

   1     come through, but we cannot get over that threat to the
   2     child". I would also try and put the percentages to
   3     them in terms of -- it is no consolation to them if it
   4     is their baby in the group that has an adverse outcome,
   5     because percentages apply to populations, whereas the
   6     complications are to the individual, and I often say to
   7     parents, "Of course that is not consolation for you as
   8     the parent; it is your baby, if they are not going to
   9     come through the operation. We can say it is 99 per
  10     cent success, but if it is your baby, it is 100 per cent
  11     for you".
  12        With regard to other complications other than
  13     death, I would nowadays -- I think this is probably in
  14     the past 5 or 6 years, I would say "You do understand
  15     that in doing this operation we have to take over the
  16     child's heart with a pump, we have to maintain blood
  17     flow to all the vital organs of the body and that then
  18     makes those organs at risk". I would mention
  19     specifically we have to maintain perfusion of the brain,
  20     the kidneys and the liver and all the other organs of
  21     the body, and of course things can go wrong.
  22        I do not particularly say "You could end up with
  23     a handicapped child", I think that is perhaps a little
  24     unsympathetic, but I guess we are changing even now and
  25     will probably have to be more explicit as time goes on.

   1     The parents want to know what I mean by that and they
   2     ask more questions than they used to.
   3        There are some specific operations which carry
   4     a particular risk of those complications. I am having
   5     to mention risks which perhaps in days gone by I would
   6     not have mentioned because it was very infrequent, so,
   7     for example, if you are repairing an coarctation of the
   8     aorta, a narrowing in the main artery in the body, the
   9     aorta has to be clamped, so depriving the lower part of
  10     the body of a blood supply for a period while the aorta
  11     is repaired. That is associated with a risk of spinal
  12     cord injury and paraplegia. In days gone by, I am not
  13     sure I would have spelt that out, but certainly in the
  14     last I think probably 10 years for this particular one,
  15     I have been saying "There is a risk of spinal cord
  16     injury because of this".
  17        I have never actually seen a child in my practice
  18     in 20 years with a spinal cord injury, so I feel a bit
  19     as though I am upsetting parents slightly unnecessarily,
  20     because it always causes them absolute horror. They are
  21     coming in for what is overall a relatively low risk
  22     procedure and I am telling them about a potential
  23     horrendous complication which occurs -- I think the
  24     literature says half a per cent, something like that.
  25     I have never seen it and we have done well over 200

   1     coarctations, I am sure. So I think in modern days,
   2     this is quite an unusual complication. I know it does
   3     occur, so I have to now tell them.
   4        So I would have quite a detailed discussion with
   5     the parents about the risk, and I would also tell them
   6     about the risks of not doing it, what the benefits are
   7     going to be to the child, what the outcome will be if it
   8     does not have surgery and usually that is a very adverse
   9     outcome. I do talk along those terms, about the risks
  10     and benefits of the procedure. I then refer them to the
  11     surgeon and the surgeon would see them and talk to them
  12     as well.
  13   MR LANGSTAFF: So in terms of your own practice, you have
  14     mentioned for 10 years the possible outcome of spinal
  15     injury and coarctation. Would you in any terms more
  16     general than saying to a parent, "Of course we may
  17     affect the blood flow to the brain"; would you, do you
  18     think, have in the past raised any question beyond that,
  19     of possible neurological complications?
  20   DR KEETON: I do not think I spelt it out that clearly to
  21     them. I have certainly mentioned the brain and the
  22     kidneys, the liver and the bowel.
  23   MR LANGSTAFF: For how long have you done that?
  24   DR KEETON: I think for many years.
  25   MR LANGSTAFF: Since 1984?

   1   DR KEETON: Yes, I think -- perhaps in America one may be
   2     more aware of risk, but I did not certainly say to
   3     parents that "You will end up with a child with a stroke
   4     or brain injured or a damaged child". I have mentioned
   5     perfusion of the brain and the risks of things going
   6     wrong.
   7   MR LANGSTAFF: This is a more difficult question. You can
   8     speak of course of your own practice. What is your
   9     perception of how general that practice was for others
  10     in the UK spelling out risks to parents?
  11   DR KEETON: I cannot speak for other people. I know what
  12     happens in my unit.
  13   MR LANGSTAFF: What is your perception of it?
  14   DR KEETON: I think most people have become more aware of
  15     the importance of spelling things out in more detail,
  16     even if it upsets the parents.
  17   MR LANGSTAFF: Would they have dealt with risks perhaps in
  18     the same way as you did, of a number of different sorts
  19     from as early as 1984 or not, do you think?
  20   DR KEETON: Certainly the people I have worked with, I can
  21     only speak for them, I think they would have explained
  22     to some extent the risks involved and certainly the risk
  23     of death, or other things going wrong.
  24   MR LANGSTAFF: Mr Hamilton?
  25   MR HAMILTON: I think I would have to disagree there.

   1     I think the move towards being much more explicit has
   2     been a more recent phenomenon and I would have put it in
   3     the 1990s. I have only been a consultant since 1991, so
   4     I can only speak from my own practice since then. It is
   5     only my perception that we felt we were protecting
   6     parents by not exposing them to all the worrying factors
   7     of what might happen, and that would have been the
   8     practice, I would have thought, in the 1980s.
   9        I think it is very important to state that every
  10     set of parents is different, and different parents will
  11     want different levels of information and different
  12     parents will take in different ideas during the
  13     consultation. I think there has been some work done,
  14     I think a figure of about 30 to 40 per cent of the
  15     information you give in a consultation is retained,
  16     because it is a very difficult and very traumatic time.
  17     So my own feeling is that the consent is a process; it
  18     is an ongoing process. I see that starting when I see
  19     the family in outpatients and I try in my practice to
  20     see them in outpatients in advance of the operation,
  21     when they were actually going on the waiting list.
  22     I see that as the actual point of consent.
  23        I think when they come into hospital the night
  24     before, I then do not go over all the details I have
  25     discussed in outpatients, because I think that is the

   1     last thing parents want to hear at a time of great
   2     anxiety.
   3        I would go even further. I think for me the final
   4     point of the consent process is actually after the
   5     operation. I like to see them again and make sure they
   6     have understood what I have actually done, how things
   7     have gone and what I would predict for the future,
   8     because, again, that is the last point at which I would
   9     see them because they would then go back to the care of
  10     the cardiologist. I do not think that is necessarily
  11     standard practice and I do not know if that is ideal
  12     practice.
  13        I think one of the difficulties we have in
  14     describing risks to parents is that we do not have
  15     a system of risk stratification for children's
  16     operations. I am sure you got the idea from Professor
  17     Anderson the other day, that even within a diagnostic
  18     category, each child will be at a different point in the
  19     spectrum of severity. Even, for instance, in tetralogy
  20     of Fallot, you have referred previously to the paper of
  21     Hannan, they put tetralogy of Fallot into three
  22     different risk categories. It is a very individualised
  23     thing. The idea of going back to results and quoting
  24     a specific figure I think is not possible. I try and
  25     give the parents a ball-park figure of whether it is

   1     a high, medium or low risk operation. Most parents will
   2     want you to put a figure on it so I will try and do
   3     that, but as I have said, I emphasise statistics do not
   4     apply to individuals, they apply to populations.
   5        Whereas on the adult side we have a very detailed
   6     and quite accurate risk stratification process, the wide
   7     variation in children and their response to surgery is
   8     so different that I do not think it is possible. The
   9     same then comes to the complications. The complications
  10     may well be specific to an operation. We mentioned the
  11     Fontan procedure earlier. It is almost universal that
  12     they will have a collection of fluid around the lungs
  13     afterwards, whereas that will be very rare with closure
  14     of an ASD. So the actual complications we might see
  15     will be specific in many cases to the operation, or the
  16     anticipated physiology afterwards.
  17        So I think it has to be geared to that. So
  18     actually getting an overall figure of the incidence of
  19     a complication is almost impossible.
  20        I tried recently to put something in writing.
  21     Because of the difficulty of obtaining information in
  22     the outpatient situation, I tried to put something in
  23     writing for the parents about potential complications.
  24     I did it right after and gave it to the nurses in the
  25     ward, in outpatients, intensive care. I gave it to the

   1     community liaison sister who has a lot to do with the
   2     parents. We did it with parents who helped me write it
   3     and rewrite it. I got a medical student attached to me
   4     at the time to contact the parents a week after to see
   5     what they felt about the written information. Half felt
   6     it was too detailed and therefore wearying and half felt
   7     it was not detailed enough. That illustrates the
   8     difficulty and the need to gear it to each individual
   9     parent. I certainly will give what I feel are the
  10     important parts of the consultation initially, depending
  11     on the diagnosis, and I think it is important to say
  12     that "Your child may die", because unless you say "die"
  13     or "death", parents do not want to hear that, so they
  14     will try and push that aside, so I think it is important
  15     to say that but then to try to quantify it and give some
  16     idea of the level of risk.
  17        But then I will mention the fact, as Barry says,
  18     that complications are relatively infrequent; it depends
  19     on the operation, but they can affect any part of the
  20     body. I will then give them the chance to ask questions
  21     and some parents will want to know every detail. They
  22     will ask specifically about brain damage, but I must
  23     admit, I do not go into specific detail unless they want
  24     me to. I try and be guided by them in their reaction to
  25     my conversation, as to how much they want.

   1        So this is a very difficult area. I do not think
   2     there is a clear answer, but I think things have changed
   3     dramatically since the 1980s and we are now much more
   4     explicit with parents.
   5   MR LANGSTAFF: Dr Macrae, I have not yet brought you in on
   6     this because we have been looking at pre-operative
   7     consents, although Mr Hamilton has taken it a little
   8     into the post-operative period.
   9        In the question I asked compendiously earlier,
  10     I mentioned also the risks of being in intensive care
  11     and the chances, if you like, of deterioration in an
  12     individual child's case.
  13        How does one deal with that?
  14   DR MACRAE: There is no separate consenting or information
  15     process really for intensive care, and the risks of the
  16     things that can happen in intensive care are really all
  17     wrapped up in the surgical risks that are quoted to
  18     families.
  19        It is quite interesting, because I think that
  20     many -- if you quote a 5 per cent risk to a family for
  21     a particular procedure, they are often quite jubilant
  22     that the child comes out of the operating room and comes
  23     back to the intensive care unit and the presumption of
  24     some parents might well be, "They have got through, it
  25     is great, they are not going to be part of the 5 per

   1     cent". That actually is a misconception, because the
   2     5 per cent risk applies to 5 per cent of the children,
   3     that is 1 in 20 of the children not getting out of
   4     hospital rather than simply coming out of the operating
   5     room.
   6        In addition to the 5 per cent which is the
   7     mortality figure, then there may well be a percentage,
   8     another 5 per cent of survivors who have significant and
   9     detectable moderate or perhaps major impairment, and
  10     again, this should have been discussed in the consenting
  11     process. Again, I think those risks are often
  12     misinterpreted and it is often felt, well, they come out
  13     of the operation so everything is going to be okay, and
  14     thinking that the neurological problem, if it did not
  15     happen in the operating theatre, it is not going to
  16     happen, whereas of course a child can be very unstable
  17     and have a cardiac arrest on the intensive care unit,
  18     which, although it is appropriately managed, may in fact
  19     lead to neurological damage.
  20        So there certainly needs to be a forum for parents
  21     to get that sort of information, and I certainly agree
  22     that consenting is a process rather than an event;
  23     I think that written information either in the form of
  24     a letter from the cardiologist spelling out some of the
  25     issues that have already been covered or a more generic

   1     information leaflet for particular lesions, or perhaps
   2     even covering the whole of heart surgery, is helpful.
   3     Above all, leaving open the channels of communication
   4     from an early stage in the consenting process, so that
   5     families can come back, parents can come back and ask
   6     more questions, if they feel they need more information.
   7   MR LANGSTAFF: Mr Darbyshire, we have been looking at the
   8     consent process as such, but the second part of the
   9     question about the impending bad news in intensive care:
  10     how is this handled, in general terms, by nurses who may
  11     talk to parents or by others in intensive care?
  12   MR DARBYSHIRE: I think the way it has been handled, again,
  13     has changed over the period involved in the Inquiry.
  14     I think, again, probably the changeover is the
  15     intensivist, or intensivists in my experience handle the
  16     impending news, the more disquieting aspects of what is
  17     happening to a child. They tend to take that on
  18     themselves and handle that quite well within the ICU.
  19     Prior to intensivists, it was a lot more difficult to
  20     actually pin somebody down to actually sit down and talk
  21     with the parents about how things were not getting
  22     better.
  23        It is very difficult, because nurses are not
  24     involved in the gaining of consent, therefore a nurse's
  25     role is like the fulfilment of all that. There is a lot

   1     of cultural and I think professional barriers against
   2     nurses actually becoming involved in this. We do not
   3     get into the prognostic outcome of the particular
   4     problem.
   5        From my own experience, I think one of the issues
   6     that I have had to deal with personally has been a child
   7     in theatre who is not doing too well with parents
   8     outside the unit waiting for the child to come back, and
   9     obviously, if the child is struggling in theatre, the
  10     major players in that particular situation cannot come
  11     out, in which case, it is like someone has to try and
  12     give an update to the parents about exactly what is
  13     happening. In a lot of circumstances they have been
  14     given an expected time of arrival, "this operation will
  15     take X number of hours" and two hours further down the
  16     line they are sitting outside the intensive care unit
  17     looking extremely worried. Then it just needs someone
  18     to try and give them the information that something is
  19     actually happening.
  20        I think nurses do have a role in informing parents
  21     about how the child's condition is progressing or
  22     deteriorating. It is very difficult. Some parents are
  23     looking all the time towards the medical staff for
  24     information. Some parents, in my experience, have shied
  25     away from what the medical staff have to stay, because

   1     I think again with these cultural differences, nurses
   2     have tended not to be as pessimistic at times, and it
   3     can be very tempting for some parents, if someone is
   4     giving a pessimistic outlook and someone else not so
   5     pessimistic, they will listen to whatever they want at
   6     the time.
   7        I think the whole issue about trying to, not
   8     prepare parents, but trying to keep them informed
   9     realistically of what is happening is extremely
  10     difficult.
  11   MR LANGSTAFF: Coming to the last part of the question
  12     I asked, is there any general practice, and if so what,
  13     about breaking the news of death?
  14   DR MACRAE: I think it is probably one of the most
  15     stressful areas of all of us who are involved in
  16     children's intensive care. The most difficult situation
  17     to deal with is the one that Andrew has just described
  18     where a child actually dies in the operating room.
  19     Under those circumstances, it is often the staff on the
  20     intensive care unit who are the closest to the parents
  21     and have to perhaps break the immediate news, and then
  22     the consultant surgeon will probably come fairly quickly
  23     out of that. It may be that the consultant surgeon is
  24     the person who comes out of the operating room,
  25     hopefully having met the parents beforehand, as they

   1     must do, to break the news to them.
   2        The situation I am more commonly involved in in
   3     the intensive care unit is a child who has been very
   4     sick for a number of days, and I think one recognises
   5     the point at which things are going from a routine path
   6     to recovery to what might turn into a path of decline.
   7     Under those circumstances, I think it is very important
   8     for the consultant looking after the intensive care unit
   9     to engage with the parents and make sure that they have
  10     information that informs them that things are not as
  11     good as they should be, and that they are given an
  12     honest view of what might happen, including the fact
  13     that their child might not survive.
  14        If that engagement occurs at an early stage then
  15     it actually is much easier to come to the point where
  16     one says either "Your child has died" or "Your child
  17     will die in the next hours".
  18        With that relationship established, it is somewhat
  19     easier than in the situation where perhaps the child
  20     comes back, does well for a period of hours and then
  21     a sudden event, perhaps a rhythm disturbance occurs out
  22     of the blue. In those circumstances it can be very
  23     traumatic, because a family may well have seen their
  24     child, they look perfectly well, they think "Great,
  25     I can relax", they are going away, having their supper

   1     and are suddenly called back to the unit because the
   2     child has deteriorated suddenly. The consultant has
   3     probably not met the parent because there was no
   4     indication that there was anything wrong. Under those
   5     circumstances it can be terribly emotional, terribly
   6     difficult, and indeed upsetting for all involved.
   7   MR LANGSTAFF: You mentioned there that what you would
   8     expect is the parents would be kept honestly informed
   9     throughout. Is there any stage, from 1984 to 1995, when
  10     that would not have been the expectation?
  11   DR MACRAE: No, I think although there have been changes in
  12     the way intensive care has been delivered, throughout
  13     that period it would have been good practice to inform
  14     parents of expectations of adverse outcomes. I would
  15     state that absolutely.
  16   MR LANGSTAFF: Following on from that, was there any
  17     temptation in the early 1980s that perhaps there is not
  18     now to block the news that might be difficult to listen
  19     to, either because of a personal difficulty in giving
  20     it, or a perceived difficulty in parents receiving it.
  21   DR MACRAE: I have certainly not practised in that
  22     way myself. I have, however, been a fly on the wall
  23     when colleagues have talked to parents of children who
  24     were not doing well, and I have sometimes been surprised
  25     at the optimistic interpretation that is given by one

   1     doctor to a family who I would certainly have given
   2     a rather bleaker picture to, and I think it can
   3     sometimes be difficult for a surgeon who has been very
   4     involved in the care of a child, perhaps through
   5     multiple operations, to admit to themselves that
   6     actually things are starting to go wrong, not through
   7     any fault of theirs, but just because of the complexity
   8     of the condition. I think that the intensivist, or the
   9     intensive care anaesthetist has the luxury of being more
  10     displaced from the family and from the parent in the
  11     work-up to a surgery; they have not developed a close
  12     relationship with the family in clinics over weeks and
  13     months or perhaps even years, in the way that
  14     cardiologists and to an extent surgeons may have done,
  15     so there is, not less emotion, but less emotional tie to
  16     the family and they have not perhaps seen the child
  17     running around in the ward the previous day, and so on.
  18        I do not wish this to sound harsh; it does not
  19     mean we are cold and heartless, far from it, but it does
  20     mean I think perhaps we can be a little more objective
  21     about what is or is not achievable.
  22   MR LANGSTAFF: It will obviously be offensive to suggest
  23     that parents would welcome the news, but do they welcome
  24     the approach, in general, of giving them the full facts,
  25     do you think?

   1   DR MACRAE: I can only judge this. I mean, clearly some
   2     parents are extremely upset when bad news is given and
   3     either one or both will leave the room or become very
   4     angry, but in most situations, if the relationship has
   5     been developed, even breaking the worst of news, parents
   6     will often conclude the discussion or come back to you
   7     and say, "Thank you very much for being honest. We
   8     appreciate that". I think on balance most parents would
   9     rather have things up-front. Even if they get angry at
  10     the time, they come back the following day and say
  11     "Okay, you had to tell me, I am glad you did".
  12   MR LANGSTAFF: Mr Hamilton?
  13   MR HAMILTON: I could not agree more. What surgeons will do
  14     is always stress to the parents that they are being
  15     honest and not hide things from them.
  16        Going back to how you actually tell them, one of
  17     the key issues is where it is done. One of the changes
  18     we have seen is the provision of a quiet area, with
  19     pleasant surroundings, if there can be such a thing in
  20     the circumstances, where parents can be told news like
  21     that and be given time to take it in. I think it is
  22     important that they have a nurse then from the unit
  23     having looked after the child who can stay with the
  24     parents and support them, because they will inevitably
  25     have further questions after whoever tells them has

   1     left. And whoever tells them, I think it should be
   2     someone who has a relationship with them, who has met
   3     them before. I think Duncan's point about the surgeon
   4     being intensely involved is particularly important when
   5     you come to decide about perhaps withdrawing treatment,
   6     that further treatment would be futile. There I think
   7     again the team approach comes in because the surgeon may
   8     wall want to be more aggressive in continuing. That is
   9     there the valuable team approach, where everybody
  10     respects everybody else's contribution, is important.
  11   MR LANGSTAFF: Dr Keeton?
  12   DR KEETON: I think I agree with everything that Mr Hamilton
  13     said. I too make a contract with the parents when I see
  14     them in the intensive care unit. I say to them, "I will
  15     not hide things from you; I will tell you straight what
  16     is going on; we will tell you the truth. If you do not
  17     understand, you ask. If we are worried, we will tell
  18     you we are worried". I think that works best. I think
  19     that is what I would expect most people to do.
  20   MR LANGSTAFF: And to have done since 1984, or not?
  21   MR DARBYSHIRE: I think this is one further issue regarding
  22     the nursing and the breaking of bad news, in that the
  23     nurse's position in the ICU is slightly different from
  24     that of the doctors, in that the nurse usually has to
  25     stay with the parents and with the patient all the way

   1     through. It is difficult to open a conversation and
   2     find a satisfactory point of closure. The nurse does
   3     not have the luxury of being able to walk away at the
   4     closure of a conversation. The nurse basically at the
   5     bedside has to stay there. It is more of a socially
   6     supporting role I feel, in my opinion, it is more
   7     socially supporting to the parents. It maybe is more
   8     appropriate if other people can come in with the nurse
   9     present and, if you like, break the news, but the nurse
  10     maybe will already have known, and then leave. Leaving
  11     the nurse with the parent is a practice I have always
  12     tried to foster.
  13   MR LANGSTAFF: The last matter which I want to canvass with
  14     you really goes back to what you were just mentioning
  15     a moment ago, the team approach.
  16        Can I just revisit that for a moment?
  17        We heard in one of the articles to which we have
  18     been referred by our other experts a description of the
  19     team as being rather like an aircraft: the relationships
  20     between the anaesthetist, the intensivist and the
  21     surgeon. The anaesthetist being rather like takeoff;
  22     the intensivist, the landing', and the surgeon the
  23     in-flight entertainment!
  24        There is a serious point in it, I think. Would
  25     you like to comment?

   1   MR HAMILTON: It emphasises the fact that everybody has
   2     a different role, but a complimentary role and that of
   3     course depends on everybody contributing their important
   4     part.
   5   MR LANGSTAFF: The emphasis it would give is that
   6     anaesthetics and intensivism is in many ways more
   7     important than the actual flight, which ought to be
   8     performed relatively safely, given modern standards,
   9     modern techniques.
  10   DR KEETON: I think it is a bit flippant. I think the
  11     surgical procedure is all important, but the team
  12     aspect, you are only as weak as your weakest link. With
  13     this sort of work, you cannot afford to make errors. It
  14     is a bit like walking on a tightrope. If you fall off,
  15     you are not going to get back on again. Certainly that
  16     applies in intensive care, so you have to demand high
  17     performance of everybody. The diagnosis has to be
  18     right, the decision-making to what operation you are
  19     going to do and the timing of it has to be right; the
  20     surgery has to be right; the anaesthesia has to be right
  21     and the post-operative care has to be right. If any of
  22     those things goes wrong, you are more likely to get
  23     adverse outcomes obviously.
  24   MR LANGSTAFF: For a team to function as a team, there has
  25     to be a certain amount of communication between them.

   1     Communication must be essential, must it not? How does
   2     one cope with the situation where the cardiologist is on
   3     one site, 15, 10 minutes away from the surgeons, or for
   4     that matter, conducting an outreach clinic which means
   5     they cannot talk to the surgeons, the surgeons cannot
   6     talk to them at that particular time unless by mobile
   7     telephone?
   8        Do those factors play a part in team effectiveness
   9     or not?
  10   MR HAMILTON: I think it is more philosophical than
  11     physical. I think communication is an attitude within
  12     the group, rather than being physically there to talk in
  13     person. I think if you have the environment that people
  14     get on and have the same long-term view and the same
  15     aims, then communication should not be a problem.
  16   MR DARBYSHIRE: I think in terms of communications, it is
  17     vital to realise it is a two-way process. If
  18     communications break down, this is when you get
  19     dysfunctional teams.
  20   MR LANGSTAFF: So the success or the failure of the team
  21     owes a lot to personality, does it?
  22   MR DARBYSHIRE: I think so. Not necessarily a social --
  23     people have to be able to professionally work together
  24     and there is an element of personality within that.
  25   MR LANGSTAFF: Does the geography and the physical aspect of

   1     helping a team to function as a team not play a part?
   2   DR KEETON: Yes, it does. I think that ideally the surgeon,
   3     the consultant cardiologist, should be close and I think
   4     that is the optimal way of dealing with it. They need
   5     to have close relationships, if you see what I mean?
   6   MR LANGSTAFF: In both senses of the word.
   7   DR KEETON: I think you need to communicate well with your
   8     colleagues and also to be available. It is difficult
   9     when one is out in peripheral clinics, which may have
  10     you in the car for three or four hours. Today with
  11     mobile phones it is easier to communicate with one's
  12     colleagues, but it would not be unusual for me to be
  13     phoned at a peripheral clinic by the surgeon to talk
  14     about something, and I would feel that was proper and
  15     correct. Now we have more paediatric cardiologists than
  16     we used to, three of us, my colleagues are extremely
  17     supportive and one of us tries to be in hospital during
  18     working hours to field any problems. I think it must be
  19     very, very difficult to work on a split site. I think
  20     it must be very undesirable.
  21   MR LANGSTAFF: Because it affects the working of the team?
  22   DR KEETON: Yes, and it must make it that much more
  23     difficult to bounce ideas off each other, to
  24     communicate.
  25   DR MaCRAE: I think there can be teams and there can be

   1     teams within teams, and I think units work best when,
   2     for instance, if a cardiologist is at a clinic, his
   3     colleague who is back at base feels empowered to make
   4     a decision about the other doctor's patient, in other
   5     words, if something is happening, rather than, "He will
   6     be back tomorrow or the day after because he has outside
   7     clinics", a real team will take a corporate decision or
   8     a proxy decision on behalf of the absent colleague, if
   9     they are not contactable, to make progress, rather than
  10     hesitate and say, "Well, things will be okay, we will
  11     wait another 24 hours". I think that is crucial. Or if
  12     the patient needs to be re-operated on and it is one
  13     particular surgeon's weekend on his yacht or whatever,
  14     then somebody else actually takes up the scalpel and
  15     does something. That must be in the patient's, I would
  16     hope, best interests. I think real teams are built in
  17     that way. Rather than looking at the team as being one
  18     cardiologist, one surgeon and one consultant
  19     anaesthetist, a good team might be, you know, three of
  20     each who interchange and discuss in a very matrix-type
  21     of way.
  22   DR KEETON: I agree with that entirely, I think that is very
  23     important.
  24   MR LANGSTAFF: The attributes of a good team we have so far
  25     are an attitude and willingness to talk, from

   1     Mr Darbyshire, the interchangeability or self confidence
   2     in each other which gives each member of the team the
   3     confidence to act. We have the physical factors which
   4     you, Dr Keeton, emphasise as playing a part in the
   5     functioning of the team. Is there anything that we have
   6     missed?
   7   DR MACRAE: I think just to stress, if an individual member
   8     of a good and functional team makes a decision and there
   9     is an adverse outcome for whatever reason that a good
  10     team will support that colleague in that decision and
  11     say "Well, you did what you thought was right at the
  12     time". A dysfunctional team might say "You killed my
  13     patient" or "Look what you have done now", and I think
  14     I would use those two examples to sort of describe good
  15     and bad.
  16   THE CHAIRMAN: Would your view hold, Dr Macrae, if the rest
  17     of the team thought that the other member of the team
  18     had in fact done something wrong?
  19   DR MACRAE: I think that is rather different. I think if
  20     there was a view among the rest of the team that
  21     something should have been done differently, then
  22     reflection ought to take place, and whether it is
  23     informal or formal, the wrong thinking should be
  24     adjusted, but in a non-confrontational and positive way,
  25     rather than a way which attributes blame.

   1   MR HAMILTON: This brings in the whole question of audit.
   2     I think it is something that we find one of the most
   3     frustrating features of what we do, and I think it would
   4     be universal amongst units that they would sit down and
   5     discuss cases where things did not work out well or the
   6     child died even, and try and work out what might be done
   7     differently. But it is so frustrating because often you
   8     cannot pick any particular feature. While one child
   9     will die while having the same operation, the same
  10     management, another child survives. It is one of my
  11     most difficult areas. I think if there was some way we
  12     could get over that, even with postmortems, I guess the
  13     majority of postmortem examinations do not actually tell
  14     you anything you did not know already, although you want
  15     to be sure that that is the case, but ...
  16   MR LANGSTAFF: Can I for my part thank you very much for the
  17     contributions you have thus far made to me? You are not
  18     entirely free yet because the Panel may well have
  19     a number of questions for you.
  20   THE CHAIRMAN: Professor Jarman has a question.
  21   PROFESSOR JARMAN: On Page 26 of today's hearing
  22     Mr Langstaff asked Dr Keeton:
  23        "How desirable is it to have intensivists rather
  24     than the surgeon or the anaesthetist who took part in
  25     the particular operation looking after the intensive

   1     care unit?"
   2        Dr Keeton replied:
   3        "I think it is very desirable."
   4        I would like to ask the other three witnesses
   5     today the question: how desirable do you consider that
   6     it is to have the intensivist looking after the
   7     intensive care unit? This would be on the basis that if
   8     necessary, the intensivist would refer to, say, the
   9     surgeon for a specialist opinion, for example, if you
  10     are deciding to re-open, and in this the intensivist
  11     would be acting rather like a general practitioner, as
  12     Dr Macrae put it.
  13        So within that context, I would like to ask you
  14     one by one your opinion about that.
  15   MR DARBYSHIRE: In my opinion, from my nursing background,
  16     eminently preferable. I would prefer that situation
  17     where the intensivist is the person who is in charge of
  18     the intensive care unit.
  19   PROFESSOR JARMAN: Thank you.
  20   DR MACRAE: I will have to hold up my flag and say I think
  21     that is right. That is the job I do, and I think that
  22     it does help to act as a focal point for the team during
  23     the intensive care phase. Although I reinforce what
  24     I said earlier, that we are in a sense a Jack of all
  25     trades and master of none, we are there to pick things

   1     up at an early stage and call for appropriate help.
   2   MR HAMILTON: I come back to my point earlier. I do not
   3     think you can separate the contributions of the three.
   4     Each has a very different contribution to make. The
   5     surgeon will have particular aspects of the operation
   6     that he may be concerned about and think might give rise
   7     to problems afterwards. The anaesthetist is the only
   8     one who knows what drugs they have been given and how
   9     they have been managed interoperatively, all of which
  10     contributes to the post-operative period. So I think to
  11     say one person is in charge to the exclusion of the
  12     others, or to put someone on a pedestal and say no-one
  13     else has a contribution -- I am sure that is not what
  14     you are saying.
  15   PROFESSOR JARMAN: I did not say "in charge"; I said
  16     "looking after the intensive care unit".
  17   MR HAMILTON: We agreed earlier that there should be one
  18     final channel through to the nurse at the bedside, and
  19     that is the intensivist by definition.
  20   PROFESSOR JARMAN: So is your answer you agree or you
  21     disagree?
  22   MR HAMILTON: I agree that the intensivist fulfils the role
  23     of being the final common pathway for all decisions
  24     about the management of the patient.
  25   PROFESSOR JARMAN: It has been said earlier today that

   1     clearly someone has to be in charge. Would you, going
   2     around the room one by one, say that would actually put
   3     the anaesthetist in charge of the intensive care unit in
   4     the post-operative period -- the "landing", if you
   5     like -- on the basis that he or she would refer to the
   6     specialist opinion of the surgeon, et cetera, as was
   7     defined by Dr Macrae? Can I take you one by one?
   8   DR KEETON: This concept of being in charge, I think I am
   9     happy with the way you have put it: that the intensivist
  10     would be in charge of the management of the patient on
  11     the intensive care unit, but not exclusively in charge.
  12   PROFESSOR JARMAN: He can be in charge but not exclusively?
  13   DR KEETON: Yes.
  14   PROFESSOR JARMAN: That is a very medical reply!
  15   DR KEETON: If you were to get a character who is not a team
  16     player, it could disrupt the care of the children. The
  17     intensivist has to be a good communicator and has to
  18     take on board the opinions of the cardiologist, the
  19     surgeon; the whole team has to work. So the concept of
  20     being in charge, I have some difficulty with, I think.
  21   PROFESSOR JARMAN: Mr Darbyshire?
  22   MR DARBYSHIRE: Working in a hierarchical profession, I have
  23     no problems with the concept of "in charge". For most
  24     of my professional career I have actually been called
  25     a charge nurse.

   1        With regard to the analogy about the aeroplane,
   2     I just wondered where the nursing was in that.
   3     Hopefully nobody is so politically incorrect as to
   4     suggest we were making the tea and pushing the trolleys
   5     around!
   6        To answer the question, I would have absolutely no
   7     problem with the intensivist being in charge.
   8   PROFESSOR JARMAN: Dr Macrae?
   9   DR MACRAE: I think the consultant intensivist has to take
  10     responsibility for the intensive care team, but also
  11     take responsibility for including other key players,
  12     including the surgeon, who has a massive role to play in
  13     the intensive care unit, in that management. But there
  14     has to be one chief in the intensive care environment
  15     "directing in the traffic", if you like. That does not
  16     mean that they take the ultimate decisions on elements
  17     of the management for which the surgeon is at least an
  18     equal or possibly superior being. I certainly welcome
  19     in the intensive care units that I am involved in very
  20     much a multidisciplinary role at every stage. But there
  21     has to be someone who the resident on the ICU knows they
  22     can talk to immediately about the range of problems that
  23     they have come across, and I think certainly in the
  24     current era that is an intensivist or an anaesthetist
  25     who is given time on that particular day to run the

   1     intensive care unit.
   2   PROFESSOR JARMAN: Within the context of taking specialist
   3     opinions from the surgeon et cetera when necessary, what
   4     would you say, Mr Hamilton?
   5   MR HAMILTON: I think if you take a child who comes into
   6     hospital for intensive care, then perhaps the
   7     intensivist will be in charge, but I am dealing with
   8     children who come into hospital for surgical procedures,
   9     and therefore I think that everybody has the role.
  10        I come back to this again: the cardiologist has
  11     the important role pre-operatively. The surgeon has
  12     obviously the key role intraoperatively in conjunction
  13     with the anaesthetist; the intensivist has a key role in
  14     the intensive care afterwards; back down to the ward it
  15     will be shared probably between surgeon and
  16     cardiologist. But ultimately if you are asking the
  17     question "Who is in charge of the patient?", I can see
  18     only the surgeon can be in charge of that patient who
  19     comes into hospital for a surgical procedure. They do
  20     not come in for a period in intensive care.
  21   PROFESSOR JARMAN: I am talking only of the period
  22     post-operatively in the intensive care unit,
  23     specifically of that only.
  24   MR HAMILTON: Fine, I am quite happy with the concept that
  25     the intensivist co-ordinates that and brings everything

   1     together and sees that care is carried out properly. If
   2     you call that being in charge, I have no problem with
   3     that.
   4   PROFESSOR JARMAN: Would you go so far as to say "being in
   5     charge", if you have no problem with it?
   6   THE CHAIRMAN: This is rather reminiscent of the Lawrence
   7     Inquiry where one of the members of the panel --
   8   DR MACRAE: Perhaps we should ask the question, I may have
   9     made a decision to use a particular combination of
  10     nutrients for the total parenteral nutrition solution.
  11     Would you countermand that order on the basis that you
  12     were in charge?
  13   MR HAMILTON: Of course not. That issue would not arise
  14     because as a team you would talk about it. If you have
  15     a good reason for using a particularly combination of
  16     nutrients and you can justify that, that is fine.
  17     I would respect your judgment in that. I have
  18     difficulty with you trying to separate these things
  19     which are inseparable really.
  20   PROFESSOR JARMAN: It just seems to me that it is necessary
  21     to know who is in charge at what time, and I think
  22     I have two full votes; one three-quarters; and one
  23     half. So that is a majority. Would you therefore
  24     change the name on the end of the bed during that
  25     period?

   1   MR HAMILTON: No.
   2   PROFESSOR JARMAN: Going around one by one?
   3   MR HAMILTON: Coming back to an example we were discussing
   4     earlier, a situation where there might be differences of
   5     opinion in the management of the child: say a child has
   6     a residual ventricular septal defect post-operatively
   7     and the question arises, the intensivist feels the child
   8     is not making progress but feels maybe they can get them
   9     in better condition; the cardiologist from
  10     a cardiological point of view says "This is
  11     a significant defect, you must re-operate". The
  12     intensivist might say "Maybe yes, but give me time to
  13     get the patient in better condition". The nurse will
  14     have obviously a contribution including what the family
  15     feels about things. Ultimately the surgeon has to
  16     decide if and when to re-operate.
  17        That is what I would see as being in overall
  18     charge of the patient and taking responsibility for the
  19     outcome of that patient.
  20   PROFESSOR JARMAN: On the basis I have described it, during
  21     the post-operative intensive care period, the name being
  22     changed on the end of the bed, I would picture that the
  23     intensivist would actually ultimately be responsible?
  24   MR HAMILTON: If you are suggesting that the intensivist
  25     will carry out any re-operation that is necessary,

   1     I could accept that, but --
   2   PROFESSOR JARMAN: No. Thank you.
   3   MR DARBYSHIRE: Just about the name on the end of the bed:
   4     so far as I am aware, in Liverpool we do admit all
   5     patients to our intensive care and on the system they
   6     come under the intensivist.
   7   MR HAMILTON: In Newcastle we do not have names at the top
   8     of the bed or the end of the bed, we have names on the
   9     chart and it is the name of the surgeon, the
  10     anaesthetist and the cardiologist.
  11   THE CHAIRMAN: I have no questions, but an observation
  12     before I thank you all, which is that one of the
  13     founding documents for this Inquiry was the Griffiths
  14     report which does inform a lot of thinking through the
  15     1980s and 1990s, and you will recall that the most
  16     significant question Lord Griffiths asked was, if
  17     Florence Nightingale had walked through the ward, she
  18     would still be asking "Who is in charge?"
  19        That is an issue which of course we have been
  20     pursuing with some vigour today, because it is an
  21     important issue, and you have been as ever, throughout
  22     the day, but particularly on that, enormously helpful to
  23     us.
  24        Let me express the gratitude of the Panel to all
  25     four of you. You come to us as experts in your various

   1     disciplines, you have helped us in that way. Our
   2     purpose has been for the last three days to draw upon
   3     the best minds in the country who can guide us as to the
   4     factual basis against which we must make judgments about
   5     discussions which we will hear over the next few weeks,
   6     and we cannot thank you enough for giving your time and
   7     energy to us.
   8        There may be other matters that on reflection you
   9     may want to help us with further, or we may come to you
  10     indeed for further help, but for the moment, I express
  11     again my sincere thanks and the thanks of the Panel.
  12        Mr Langstaff?
  13   MR LANGSTAFF: Sir, it is at this stage that I generally
  14     outline what is going to happen in the forthcoming week
  15     and I shall do so.
  16        On Monday, we shall hear if not the last then
  17     almost the last of our issue of the second part
  18     witnesses, dealing with the national scene: Sir Graham
  19     Hart, the Permanent Secretary of the Department of
  20     Health from 1992 to 1997.
  21        After him, on Monday, we will hear from Mrs Helen
  22     Rickard. She is a parent; the focus of her evidence
  23     will principally be on the issue of the retention of
  24     tissue which is the issue which we will be addressing
  25     for the rest of the week. Because of necessary

   1     logistical problems of timetabling it in one batch, as
   2     it were, we have dealt with it piecemeal a little over
   3     the last few months, but we will devote the last three
   4     and a half days of next week to that, beginning with
   5     Mrs Rickard on Monday afternoon.
   6        On the Tuesday we have three parents who will tell
   7     us of their own experiences, with particular reference
   8     to the issue of retention of tissue.
   9        On Wednesday we have Dr Michael Ashworth, the
  10     Consultant Paediatric Pathologist at St Michael's
  11     Hospital here in Bristol. On the Thursday, Professor
  12     Berry, the Professor of Paediatric Pathology at
  13     St Michael's Hospital, whose involvement has already
  14     been mentioned more than once, and Mrs Michaela Willis,
  15     who will not talk of her child's case but will talk
  16     about her involvement in the tissue issue and on behalf
  17     of the Bristol Children's Heart Action Group, and deal
  18     with the generalised issues which arise rather than the
  19     issues particular to her as a parent.
  20        That is the outline for next week. We begin on
  21     Monday at 10.30, the other days at 9.30.
  22   THE CHAIRMAN: Mr Langstaff, I am grateful. Reminding
  23     everyone it is 10.30, we adjourn until then with thanks
  24     to everyone, and good afternoon.
  25   (2.30 pm)

   1     (Adjourned until 10.30 am on Monday, 20th September
   2     1999)
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   5                I N D E X
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   8                SEMINAR:
   9        POST OPERATIVE MEDICAL AND NURSING CARE
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  11        MR LESLIE HAMILTON, DR DUNCAN MACRAE,
  12        DR BARRY KEETON and MR ANDREW DARBYSHIRE ..... 1
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Published by the Bristol Royal Infirmary Inquiry, July 2001
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