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Contents > Annex A
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Interim Report: Removal and retention of human material
Annex A: An account of the evidence to the Inquiry on the removal and
retention of human material at post-mortem
Part II: The Bristol Story
The hospital post-mortem consent forms used
at Bristol
Development of paediatric pathology in Bristol
Bristol practice on retention, use and disposal
of human material
Professor Berry and liaison with the Bristol
clinicians concerning Coroners' post-mortems
Discussing post-mortems with parents in Bristol
Doctors
The emergence of concerns in Bristol
Professor Berry and changes to national practice
from the mid-1990s
The hospital post-mortem consent forms used at Bristol
- In a letter dated 15 February 1985 from J K Oliver, senior administrative
assistant, to Professor G M Stirrat, Department of Obstetrics and Gynaecology,
Bristol Maternity Hospital (BMH), there was a postscript addressed to
Professor Berry stating that the hospital post-mortem consent form then
in use at the BMH did not contain a clause about the removal of human
material for research purposes. [72]
Later that year, on 18 September 1985, Professor Berry wrote to A B
Missen at the Medical Defence Union asking for advice on changing the
hospital post-mortem consent form. He wrote:
'Our local ethics committee have insisted that specific written
consent must be given before tissue can be taken at post-mortem for
research purposes. I am therefore caught between my clinical colleagues'
understandable wish to protect parents from further distress, and
my wish to co-operate with other colleagues by supplying small samples
of tissue for their research.' [73]
- Professor Berry suggested a revised consent form in 1985 which gave
the option of retention of human material for diagnosis, medical education
and research. [74]
As he told the Inquiry:
'the idea was to increase parental choice, but also information
so they had a better idea what it was they were consenting to, or
at least, I could be sure that some sort of explanation had been gone
into.' [75]
- The consent forms for hospital post-mortems then in use at Bristol
Royal Hospital for Sick Children (BRHSC) and BMH were different from
those in use at the BRI. [76]
Although they came under the umbrella of the United Bristol Hospitals
Trust (UBHT), there was not at that time a corporate approach to this
matter. Thus, a variety of different consent forms were in use within
the district.
- Professor Berry told the Inquiry that one reason was that it was
not possible to have a single consent form for use in the different
hospitals which are now part of the UBHT, which could deal with infant,
child and adult deaths, which would be:
'suitable for people who have lost very young or stillborn children
[and also] for adults.' [77]
back to top
- Mrs Diane Kennington, the PAO at the BRI, has, since 1983, been responsible
for obtaining consent to the hospital post-mortem at the BRI. Her recollection
was that all of the cases involving children at the BRI were Coroners'
post-mortem cases, for which no consent form was required. As such,
Mrs Kennington had not seen the form which Professor Berry and Dr Ashworth
said was then in current use at the BRHSC and BMH.
[78] The
consent form that she had always used was for hospital post-mortems
performed on adults and was provided to the Inquiry.
[79]
- The Bristol and Weston Health Authority's (BWHA) legal advisers at
the time did not appear receptive to the revised consent forms for hospital
post-mortems that Professor Berry suggested. In a letter dated 2 December
1985, Mr R I Johnson, of Osborne Clarke, Solicitors, wrote to Mr V Harral,
District Administrator, BWHA, stating that the problem was:
'the level of loss involved in the bereavement. I think that this
is particularly so at the Maternity Hospital where one is asking a
mother of a newly dead baby for consent to cut it up in the interests
of medical science.' [80]
- A subsequent comment from Mr Harral on Professor Berry's proposed
form was that:
'I do not know that it confers any benefit in terms of being more
sympathetically worded and, therefore, likely to be more acceptable
to parents.' [81]
back to top
- Professor Berry, however, remained of the view that consent
[82] was
required in order to remove and retain human material for the purposes
of medical research or organ donation [83].
He understood that this applied to coroners' post-mortems and hospital
post-mortems alike. This is demonstrated by a letter of 28 August 1986
from Professor Berry to Dr Robert Parker, the head of the Homograft
Department at the National Heart Hospital, in which Professor Berry
wrote:
'our Coroner in Bristol will quite properly not allow us
to take tissues from cases in his jurisdiction without consent of
the relatives which can usually not be obtained. Secondly my clinical
colleagues have not allowed me to change the form of our hospital
post-mortem request form to include permission for removal of tissues
for teaching, research or organ donation.' [84]
Professor Berry appears to be referring here to human material other
than that required during a Coroner's post-mortem to establish the
cause of death.
- Mr Paul Forrest, HM Coroner for Avon since 1992, confirmed that this
was Mr Hawkins' approach in relation to Rule 9 of the Coroners Rules.
[85]
- Throughout 1986 and 1987, Professor Berry continued in his efforts
to amend and standardise the hospital post-mortem consent forms in use
in Bristol to include reference to the removal of human material for
research. [86]
The revised hospital post-mortem consent form had been with the hospital
lawyers for 'over a year', [87]
and it had been two years since Professor Berry had first raised the
matter at the Division of children's services. [88]
This was a cause of frustration for Professor Berry as he:
'was unable to help parents collaborate with ethical research and
I was unable to take maximum advantage of the privilege of the post-mortem
examination to help other people.' [89]
- Finally, at a meeting of the division of children's services on 20
October 1987, the consent forms were approved on the advice of the District
Solicitor. [90]
The forms came into effect in 1988. [91]
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Development of paediatric pathology in Bristol
- Until 1971 there was no specialist paediatric pathology service at
the BRHSC. Post-mortems on children, whether Coroners' post-mortems
or hospital post-mortems, were carried out at the BRI or the city mortuary.
- Between 1978 and 1992, Mr Donald Hawkins was HM Coroner for Avon.
Local practice in relation to coroners' post-mortems under Mr Hawkins
was:
'that deaths following operations to correct medical conditions
were deaths arising from natural causes and as such only referable
to the Coroner if the cause of death was unknown, or unknown without
a ... post-mortem examination.'
However, he did require that he be informed of deaths that occurred
on the operating table. [92]
- In 1983, Professor Berry was appointed consultant paediatric pathologist
at the BRHSC. [93]
- Mrs Kennington was appointed to the position of Patient Affairs Officer
(PAO) at the BRI in 1983. She was previously the cashier at the BRI.
All of her previous employment had been finance-related. She was approached
and asked if she wanted to become the PAO. Her duties have not changed
significantly since her appointment: [94]
'My role, really, was a facilitator for the families, the bereaved
families that came to see me.'
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- In a review dated 21 September 1990, the Department of Health (DoH)
set out minimum standards for a perinatal pathology service. It recommended
the establishment of a second paediatric pathology post in Bristol and
the development of a professorial unit of paediatric pathology at the
University of Bristol. [95]
In 1990, the University of Bristol won a grant to establish a university
chair and Dr Berry (as he then was) was appointed Professor of Paediatric
Pathology.
- Professor Berry was at this time particularly concerned with funding
as
'several paediatric regional services have become established without
provision for Paediatric Pathology back up. For example, paediatric
cardiology and cardiac Surgery required 37 detailed examinations in
1988 which were unfunded'. [96]
Professor Berry wanted these services to be included in contracts
[97] as,
in 1991, cardiac surgery accounted for
'one quarter of [Professor Berry's] post-mortem workload, and I
have already performed around 20 necropsies this year on these patients.
Each post-mortem takes at least two hours of my time excluding histology
and monthly meetings. These examinations are well worth doing as our
recently published audit showed errors of diagnosis or surgery in
nearly 40 per cent which probably contributed to death in about 17
per cent of cases. Over the last three years, I have pointed out in
increasingly strident terms to all the paediatric cardiologists and
cardiac surgeons that this is an unfunded service, and that they should
make provision for their 10 per cent surgical mortality when agreeing
contracts. This has not resulted in any apparent action on their part.'
[98]
- The South Western Regional Health Authority's (SWRHA) policy was
set out in a report of 9 April 1991, which stated that:
'all children who die in the peri-operative period should have a
post-mortem.' [99]
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Bristol practice on retention, use and disposal of human material
- The SWRHA report emphasised that:
'retention of tissue for purposes other than to establish the cause
of death is subject to the Human Tissue Act, 1961. The constraints
apply equally to clinical autopsies and those performed for the Coroner.'
- This report was prepared by Dr Charles Shaw, [100]
Director of the Bristol clinical audit unit, and others following a
meeting of the National Confidential Enquiry into Peri-operative Deaths.
It is the
'amended version of the general conclusions of the surgery on children
discussion document.' [101]
Surgeons at the BRI were asked to comment on it before it was submitted
to the regional health medical audit committee.
- In 1991, Professor Berry issued Bristol paediatric pathology department's
first Code of Practice. [102]
The evidence suggests that Professor Berry was in the vanguard in national
terms in this development.
- The Code of Practice advised that human material could normally only
be retained as part of a Coroner's post-mortem 'for the express purpose
of establishing the cause of death for HM Coroner' or 'when civil or
criminal litigation is in prospect'. The Code of Practice continued:
'in post-operative cardiac cases, the pathologist must make his
own judgement in each case whether further examination of the heart
is strictly necessary to determine the cause of death'.
- However, it seems that the references in the code to 'retention'
in fact were intended to refer to the initial removal of the human material
from the body and its subsequent retention beyond the funeral date.
The code does not appear to have addressed difficulties as to the continued
retention of human material initially removed during a coroner's post-mortem
in order to establish the cause of death, after the cause of death had
been established and the Coroner was functus officio. It was
this practice which led to the retention of the great majority of the
hearts from paediatric cardiac surgery patients and to the subsequent
public concern about practice in Bristol and elsewhere.
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- As to this practice, the long-term retention of Rule 9 material,
Professor Berry's initial view appears to have been that shared by his
profession generally. He told the Inquiry:
'Our understanding and the understanding of pathologists in general
is that if tissue was legally retained for the purpose of diagnosis
under Rule 9, when it was no longer required for that purpose it was
ethical, legal for us to retain it for other purposes.'
[103]
- In May 1996 (after the TV programme 'Dispatches' had been broadcast)
Professor Berry amended the Pathology department's Code of Practice
to state that, in Coroners' post-mortem cases, as regards whole organs
if not tissue, they would only be retained:
'if essential for completing the report to the Coroner' or 'if the
clinician wishes an organ to be retained and has discussed the retention
of the organ with the child's parents and recorded their consent in
the case notes.' [104]
In relation to disposal, the code as revised stated that:
'where there are no forensic or medico-legal issues, whole organs
will be disposed of by incineration after one year unless we have
been made aware that the parents wish to make their own arrangements
for disposal...' [105]
- Professor Berry again amended the department's Code of Practice on
23 November 1998. Dr Ashworth agreed that the amendments were required,
as by that stage there was more public awareness of the issue of organ
retention and 'perhaps some antagonism to it.' [106]
The code, as then amended, was more specific in its requirement for
documentation and stated that:
'if the pathologist considers that retention of a whole organ is
important for audit, educational or other reasons ... then permission
to retain it should be obtained from the parents by the clinician
involved in the care of the child.' [107]
- Dr Ashworth told the Inquiry that the Bristol Coroner had never given
instructions as to what could be done with material removed during a
Coroner's post-mortem under Rule 9. Mr James Wisheart, consultant cardiac
surgeon, said:
'There was a clear distinction in this area of whether or not one
needed consent to retain tissue, in our minds at that time, be it
right or wrong, between a Coroner's post-mortem and a hospital post-mortem.
In the latter, we understood clearly that it was necessary to have
consent for everything specifically. In the Coroner's cases, our perception
of things was that it was not so necessary.' [108]
Mr Forrest disputed this and said that he continued the previous
practice of Mr Hawkins. [109]
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Professor Berry and liaison with the Bristol clinicians concerning
Coroners' post-mortems
- Professor Berry was plainly troubled by the question of retention
of human material removed pursuant to Rule 9 of the Coroners' Rules
during a Coroner's post-mortem. On 6 August 1992, Professor Berry sent
a letter to the Bristol cardiologists and cardiac surgeons which stated
that:
'in future we will not be able to retain the heart unless there
is a signed statement in the notes from one of the doctors looking
after the child that they have satisfied themselves that the parents
of the child do not object to the retention of tissue during the course
of the Coroner's post-mortem examination.' [110]
It is noteworthy that this letter refers to the retention of tissue
'during' the course of the Coroner's post-mortem. In the circumstances,
it can only mean 'after' the post-mortems, but this lack of precision
and clarity was an ever-present feature of all discussions.
- Responses from the recipients of this letter varied:
a) Dr Rob Martin, consultant paediatric cardiologist at Bristol,
recalled the letter but did not reply as he knew Dr Stephen Jordan,
consultant paediatric cardiologist at Bristol, had replied and he,
Martin, was still fairly new to the unit; [111]
b) Dr Jordan responded by saying that it was something that he would
keep in mind; [112]
c) Mr Dhasmana responded to Professor Berry admitting an 'oversight'
and added, 'on some occasions, some of the parents have not liked
any discussion regarding the post-mortem examination:'
[113]
d) Mr Wisheart thought that the need for this had 'eased under the
jurisdiction of the new Coroner'. [114]
Mr Wisheart told the Inquiry that 'it has never been represented to
me that this was a legal requirement ... I very much felt that the
advice given by Professor Berry was certainly far-sighted and prudent,
but was in a sense more than was necessary in our practice at that
time.' [115]
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Discussing post-mortems with parents in Bristol
- Mrs Kennington had been the Patient Affairs Officer at the BRI since
1983. Her role was confirmed at the hospital medical committee in June
1997 where:
'it was generally felt that the Patient Affairs Officer was at present
the best person for obtaining consent for post-mortems';
[116]
and again at the patient care standards committee (PCSC) in July
1997, where it was stated that senior staff:
'felt that it was handled adequately already and displayed no enthusiasm
for becoming more involved.' [117]
- Mrs Kennington's evidence was that relatives:
'feel more at ease with me ... they can discuss things that they
probably would not like to discuss with the doctor, consultant or
even the nursing staff and, also, that they could bring to me any
problems that they might have which they would not feel that they
could talk to a doctor about, a complaint or a comment that they would
feel a lot easier talking to me about.' [118]
- As noted previously, Mrs Kennington usually obtained consent to hospital
post-mortems performed on adults as, in her recollection, all of the
post-mortems on children at the BRI were Coroners' post-mortems for
which no consent form was required.
- It was left to Mrs Kennington to decide what to tell relatives about
post-mortems. She was of the view that, when the families said that
they hoped the post-mortem would help other people, they were accepting
the fact that human material might be removed. She never explained to
relatives what was meant by 'tissues' even though she understood, without
being told expressly herself, that it could mean an entire organ. She
appeared to be left in no position adequately to explain to relatives
the full implication of the document which she was encouraging them
to sign.
- Mrs Kennington was not a clinician. As Mr Ross stated:
'one matter which was raised was the fact that the staff in the
BRI complex who obtained consent for post-mortem were not all fully
conversant with the procedures in the pathology department and might
be unable to answer detailed questions raised by relatives.'
[119]
It is unclear whether Mr Ross is also referring to Mrs Kennington
in saying this. Mrs Kennington's role had been confirmed by the hospital
medical committee in June 1997, after the commencement of Mr Ross's
tenure as Chief Executive of UBHT.
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Doctors
- Mr Dhasmana found discussion of post-mortems very difficult. He told
the Inquiry:
'This used to be a most difficult period... I was always emotional
during this meeting and the only way I could really just, you know,
express it was just quickly get to the point ... and because it had
happened in theatre or whatever, like that, I would then say that
"A Coroner's post-mortem will be carried out ..." It used
to be very difficult for me to communicate very well at that time.'
[120]
- Mr Dhasmana advised the Inquiry that, in his opinion,
'training of medical staff should include bereavement counselling
training, which would provide the skills required to obtain post-mortem
consents. The death of a child, during or after surgery, is a very
difficult period for the parents and for the treating clinical teams,
and it is important that all aspects of the situation be dealt with
sensitively and without hurting parents' feelings.'
[121]
- Mr Wisheart said:
'It was not my practice to seek consent for retention of the heart
after a Coroner's autopsy. I did not feel that it was appropriate
to add to the anguish of the parents by asking for permission to keep
their child's heart for scientific purposes.' [122]
- Junior staff were not comfortable with tackling the issue of post-mortems
with parents either. Mrs Kennington is recorded as having told the PCSC
in June 1997 that:
'half the consultants were happy for [Mrs Kennington] to deal with
post-mortems and retrieval consents; junior housemen were reluctant
to approach families about this delicate subject...'
[123]
- Further evidence of the difficulties experienced by clinicians was
that on 10 May 1994, at a meeting of the division of medicine:
'Dr Roberts reported that a number of junior staff had spoken to
him concerning the difficulties being experienced in requesting autopsies.'
[124]
When Dr Clive Roberts, who was the clinical dean and consultant
senior lecturer in clinical pharmacology and therapeutics, was asked
to clarify this comment by the Inquiry, he said that the junior doctors
had told him:
'that it was often difficult to see relatives. This was because
death certificates which had been written early in the day tended
to be collected without the doctors being offered a chance to talk
to the relatives... I think some [doctors] also tried to avoid this
difficult situation.' [125]
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- As regards hospital post-mortems, in particular, in 1991 a joint
working party of the Royal College of Pathologists, the Royal College
of Physicians and the Royal College of Surgeons of England stated in
its report entitled 'The autopsy and audit' that 'great care
should be taken in obtaining permission for hospital post-mortem. The
responsibility lies with the consultant in charge of the case.'
[126]
- Again, in the 1998-99 consultation paper of the Royal College of
Pathologists, it was recommended that:
'the most senior doctor who knew the relatives best during the patient's
last illness should obtain consent to the hospital post-mortem examination.'
[127]
- These recommendations were not followed in Bristol during the period
of the Inquiry's terms of reference. Contrast UBHT 0212 0010 dated 9
April 1991 ('requests to parents for permission should be made by consultants')
with the revised policy at UBHT 0025 0242-3 dated 19 September 1991
('requests to parents for permission should usually be made by consultants').
The UBHT's recent 'Staff guidance on post-mortem examinations' states
that it is 'intended to assist junior medical and nursing staff when
they discuss the need for a post-mortem with the next-of-kin of a deceased
patient.' [128]
- Professor Berry takes the view that the UBHT's policy should be that:
'when a child dies, parents should rightly expect that somebody
senior should come along and explain what has happened and what is
going to happen to their child. That has always been my view.'
[129]
- Mr Ross gave evidence that it was common practice throughout the
NHS for consent to a hospital post-mortem to be obtained by junior medical
staff:
'I think the answer is that generally that would be delegated to
junior medical staff, but sometimes a practised and experienced patients'
affairs officer or relatives' officer, someone like that, would undertake
that task at the request of the consultant medical staff.'
[130]
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The emergence of concerns in Bristol [131]
- On 27 March 1996, the television programme 'Dispatches' examined
paediatric cardiac surgical services in Bristol. Mrs Helen Rickard,
whose daughter Samantha had died after open-heart surgery at the BRI
in 1992, saw the programme. It prompted her to contact the UBHT about
the care of her daughter. Mrs Rickard arranged to view her daughter
Samantha's medical notes.
- Mrs Rickard knew that her daughter had been the subject of a post-mortem.
She said:
'[I was told] there would need to be a post-mortem because she died
in theatre and I accepted that... I knew that they had to cut her
open. I knew that is what happened in a post-mortem, that they cut
the body open and they look at things inside. At that point, I do
not think I thought any more of it.' [132]
- On 15 April 1996, Mrs Rickard telephoned Mr Ian Barrington, general
manager of the BRHSC, as she had discovered from the notes that her
daughter's heart had been retained at post-mortem.
[133] Mrs
Rickard visited the UBHT to view the heart with Mr Barrington and Professor
Berry. At this meeting, on 8 May 1996, Mrs Rickard asked Professor Berry
who had the responsibility of informing parents about the issue of retaining
human material, and he recorded himself as saying:
'in Coroners' post-mortems there was probably no requirement in
law, but that [he] would expect the clinician who reported the case
to the Coroner to explain to relatives that there would be a post-mortem
examination and what it entailed.' [134]
- Subsequently, Professor Berry spoke to the Coroner:
'who confirmed that retention of the heart from cardiac surgical
cases is appropriate, but that his responsibility for the tissue ceases
once he has completed his investigation.' [135]
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- In the period after Mrs Rickard saw Professor Berry in 1996, and
after the broadcast of the 'Dispatches' programme and the publicity
surrounding the General Medical Council's proceedings against Dr Roylance,
Mr Wisheart and Mr Dhasmana, many parents made enquiries of UBHT. Professor
Berry dealt with parents' enquiries about retention of human material
on an individual basis as he:
'considered it wrong to approach parents who might have come to
terms with their loss and not wish to be confronted with this issue.'
[136]
As Mr Ross said in evidence:
'unless the Trust could identify the individual parents who wanted
to know whether organs or tissue had been retained, it would be a
gross intrusion on their grief to contact them.'
[137]
- Mr Barrington was aware that a small number of enquiries were made
of Professor Berry between mid-1996 and the end of 1998. In discussion
between Mr Barrington, Professor Berry and Mr Ross, it was 'agreed that
we could only await contact initiated by parents, recognising that some
parents would find a direct approach from us both unwelcome and distressing.'
[138]
- In the meantime, the Bristol Heart Children Action Group (BHCAG)
was formed and its members had meetings with the Rt. Hon. Frank Dobson
MP, the then Secretary of State for Health, at which they requested
an independent inquiry. The Inquiry was announced on 18 June 1998.
[139]
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- On 2 November 1998, there was a meeting between the executive of
the BHCAG and the UBHT. Mr Ross confirmed in a letter to Mrs Michaela
Willis, chair of the BHCAG, on 6 November 1998 that the following approach
was to be taken as regards retained human material:
'(1) the BHCAG would write to all the parents who had expressed
concern on this issue;
(2) BHCAG would ask parents to forward permission via the BHCAG
to the Trust for their particular case to be looked into...;
(3) when permissions were received, the BHCAG would forward them
... to Ian Barrington, general manager at the BRHSC;
(4) UBHT would then reply to each parent/family... The letter would
explain the individual circumstances of each case and also make reference
to the benefits to research and future clinical practice that had
accrued from the knowledge gained from post-mortems and subsequent
tests, etc.' [140]
- Professor Berry began the process of compiling a list of children
who had died after cardiac surgery and had undergone post-mortem examination
(whether Coroners' or hospital post-mortems) in the department of paediatric
pathology. [141]
- At a meeting on 4 February 1999, the UBHT told the BHCAG about the
number of hearts that had been retained and that, in addition, other
organs had been retained in some cases. Mr Ross told the Inquiry that:
'it was only relatively late that I found out myself the material
retained was not only limited to hearts.' [142]
After this meeting Mr Ross asked Professor Berry to prepare a list
of the retained hearts as a matter of urgency. Professor Berry stated
that:
'to create the list requested...it was necessary for me to hand
search approximately 2,800 post-mortem reports to identify all children
who had had post-mortem examinations after undergoing cardiac surgery
between November 1971 (when the department of paediatric pathology
began) and the end of 1995.' [143]
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- There was a further meeting on 8 February 1999 at which Mrs Willis:
'informed the Trust that we could no longer await their further
deliberations because we had been informed that the press had become
aware of the story by a Trust leak. We further told the Trust that
we were not prepared to allow our members to find out about the retention
issue via the media as had happened in the past in relation to other
revelations. As they were unready to write to the parents with an
agreed letter, we intended to write to our parents immediately, issue
a press release and hold a press call to make sure that, as far as
possible, the full facts were presented. The reason for doing this
was I would have been no better than what we accused the Trust of
doing 'withholding' information and I could not be party to this.'
[144]
Mr Ross, however, was particularly concerned about the information
being released in this manner as:
'there would be a substantial number of ... parents who would only
find out through the media.' [145]
The Trust had by this stage prepared draft letters with the assistance
of the BHCAG executive that were to go to the families. The UBHT letters
had to be amended in light of the press release from BHCAG.
- At a further meeting attended by the BHCAG executive and Mr Barrington
on 15 February 1999, when Professor Berry had completed his investigations,
it was agreed that:
'the Trust would write a letter that would be given to the Heart
Action Group so that they could send it out to their members; there
could be a consent form included in that letter for them to send back
... so we would know the parents that wished to know about their child's
situation.' [146]
- Mr Barrington, who was responsible for liaising with parents, did
not at first discover the correct state of affairs in all cases. He
had told some parents that a post-mortem had not been carried out and
then subsequently discovered that one had in fact been performed. He
also told some parents that there was no indication that the heart had
been retained although he later found records that it had been retained
and then disposed of.
- Mr Barrington informed the Inquiry that the total number of parents
who made enquiries was 231 and, of those, the total number of children
whose organs had been retained was 140. [147]
The process was a time-consuming one for both Mr Barrington and Professor
Berry. Professor Berry realised that:
'parents often wanted much more information than whether or not
we had their child's heart. This further information included whether
the whole or part of the heart had ever been retained, what other
tissue samples had been retained, why tissues had been retained, and
when they were disposed of. We tried to provide this information in
subsequent letters.' [148]
- Unfortunately, the information initially given to a small number
of parents was inaccurate. [149]
For example, Mrs Lorraine Pentecost stated that she had:
'received a letter [in February 1999] from the UBHT telling me that
they had my son's brain, heart and liver. Previous to the letter arriving,
I had had a telephone call from the UBHT telling me that they had
my son's heart, brain and lungs... [in September] I had a letter saying
that they had kept Luke's brain, heart, lungs, liver, kidney, spleen
and stomach.' [150]
Despite Mrs Pentecost's queries in the period between February and
September 1999, Mr Barrington did not confirm what human material
had been retained until he had spoken to Professor Berry. There was
a delay in relaying this information to Mrs Pentecost as Mr Barrington
was on leave and busy with 'other work commitments' on his return.
[151]
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Professor Berry and changes to national practice from the mid-1990s
- Professor Berry played a leading role in the review of his profession's
approach to the removal, retention, use and disposal of human material
at and after post-mortem. As chairman of the Royal College of Pathologist's
specialist advisory committee on paediatric pathology, he oversaw the
drafting of a document alerting paediatric pathologists to changing
public opinion on the retention of human material. He was chosen by
the Royal College of Pathologists to chair a working group with a view
to producing guidelines. The draft guidelines were put to the patient
liaison group of the Royal College of Pathologists in January 1999.
Following media attention about events in Bristol in February 1999,
he stood down from the working party.
- In March 2000, the Royal College of Pathologists' paper entitled
'Guidelines for the retention of tissues at post-mortem examination'
was published. [152]
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Footnotes
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