Final Report > Chapter 23: Respect and Honesty > Support for patients and for families

Support for patients and for families

38 A further feature of a patient-centred health service which respects patients' needs is the provision of support to patients and relatives by the NHS. We regard this as of very great importance. It should not be limited to the time actually spent in hospital but should extend to the time before admission and after discharge. We recognise that difficult questions arise as to the proper, and indeed effective, reach of the hospital, given its resources. Thus, we do not see the provision of the sort of support referred to here as being the exclusive responsibility of the hospital. A period in hospital is only one element along a continuum of care. Rather, we argue for the development of a more integrated approach to the provision of support services, whereby the respective roles of the hospital, the GP and local primary care team, the local Social Services Department and the various volunteer organisations are clarified and organised around the needs of the patient. We were struck by a strong theme which emerged consistently from parents' evidence in Phase One: that they felt abandoned, both in the hospital and later, after the discharge, or the death of their child. Very often, their need for support was closely linked to a need for information about their child's care, particularly when a child had died. Support is a subtle and complex process. It requires skill. Some patients may reject it. For others, it is a lifeline. What matters is that the hospital (with other organisations) has a system whereby information which addresses the needs of parents and patients on leaving hospital is communicated swiftly and that efforts are made to integrate a process of continuing care and support. [31]

39 To meet these needs for an integrated system of support, a hospital must have a well-developed system and a well-trained group of professionals whose task it is to provide counselling and support and to make the links to the various other forms of support (such as that provided by voluntary and social services) which patients may need. (We use the generic term support to include counselling, while conscious of the fact that counselling is distinct and calls for different training and skills.) The support which may be required is wide ranging. It can include, for example, information about disability benefits and the various other forms of help that may be available after discharge from hospital. It can include talking to someone who has had a similar experience. It can include factual information about what to do when someone has died, and longer-term support after bereavement. Crucially, this wide-ranging set of needs must not be regarded as an optional `add-on', to be provided solely by untrained volunteers or untrained administrative staff; or in an `ad hoc' way by healthcare professionals, according to whether they happen to be available at the time. It is integral to care and should be regarded as such. It is what patients (and others) are entitled to.

40 Support at a time of bereavement warrants special attention. In England about half of all deaths take place in a hospital. [32] For children, this figure is higher. When a child dies it is always traumatic and often unexpected. We believe that the provision of a professional bereavement service within hospitals is absolutely essential. This is especially so for families whose child has died.

41 Many families find emotional and social support from others who themselves have gone through similar experiences. They value the exchange of information and mutual understanding which such support groups offer, often long after they or their child left hospital. It is not necessary for each and every hospital to create such groups; what matters is that such groups, wherever they develop, particularly in the voluntary sector, are supported, and that means funded, as an important part of the healthcare process. Within the hospital, patients and families need to be told that such support exists and how to call upon it. Equally, healthcare professionals must be made aware and must be active in directing patients towards it. The proposed Patient Advocacy and Liaison Services could play an important role here; it is vital that these services are visible within each trust, that staff are familiar with what they can offer, and that these services are properly funded. NHS Direct and NHS Direct Online can and should also serve as a gateway to such groups.

Footnotes

[31] A number of recommendations on this matter were made in the `Report of the independent inquiries into paediatric cardiac services at the Royal Brompton Hospital and Harefield Hospital'. April 2001. www.rbh.nthames.nhs.uk

[32] See this Inquiry's Interim Report `Removal and retention of human material', 2000. Annex C