1.  ISSUES OF CHOICE

  I would like to raise two points with respect to this item:

(a)  A significant barrier to the ability of patients, carers and members of the public from making sensible choices is their lack of information about local services. They may not know of the range of local provision and also how to access the individual services.


Solution: There should be a national directory of palliative care services designed for and truly available to the public and all potential patients and carers. This could be based on the "Hospice Directory" which is produced each year from the Hospice Information Service based at Help the Hospices, but it needs to be more accessible and should in appropriate format and language(s). It needs to contain detailed information on what local services offer, how to make contact with them and also how to visit (eg bus routes). Part of this information can be made available on the internet and my academic department has designed and launched a suitable website called www.PIESforcancer.info (PIES stands for "personalised information, education and support"). Although the PIES website is currently only offering details of services for cancer patients and for the North Trent Cancer Network, this reflects its origins and funding. (It was originally developed by generous grants from Macmillan Cancer Relief). PIES could be extended for other disease groups and for all geographical areas. Of course, other means of providing information would need to be developed.

(b)  Another barrier to patients' ability to choose is that their professionals (cancer specialists, heart and lung specialists, geriatricians and GPs etc) have differing and often incomplete awareness of the benefits of palliative care. Thus these and other healthcare professionals act as gate-keepers to the services. It is commonly recognised that earlier referral to palliative care could help to make many problems more easily alleviated or even preventable.. However, the lack of a standardised way of recognising which patients/carers to refer, and when, prevents this important preventive role.


Solution: There should be a nationally accepted screening instrument which can be used by all health and social care professionals which when completed by the patient, carer or professional on their behalf, indicates clearly if the person is suitable for referral. In my department, through generous finding from the Elizabeth Clark Charitable Trust (a member of the Sainsbury Family Trusts), we are developing such a screening instrument. This will be available in different formats for—professionals, patients and carers (and in many languages). However, it clearly needs to be tested in rigorously conducted scientific studies and we are planning these studies now with the Elizabeth Clark Charitable Trust.

2.  EQUITY OF PROVISION AND ACCESS

(a)  As well as the factors mentioned in the terms of reference, another aspect of equity is concerning diagnostic grouping. Although the rhetoric in recent years has been of "palliative care for all", there is actually very little evidence that palliative care services (especially the independent hospices) have broadened their focus and admission criteria to anyone other than advanced cancer patients. According to the Hospice Directory 2004 booklet, in 2003 the proportion of non-cancer patients admitted to palliative care was only 5%. Indeed, according to the 1998 booklet, it stood at 5.8% so the proportion of non-cancer patients has actually fallen! I cannot think of another comparable healthcare speciality which has kept the doors of access to it so narrowly closed by its own choice.

(b)  There are many reasons for this lack of openness to non-cancer patients in British palliative care (as opposed to the way that services have developed, for example, in North America). An important one put forward by palliative care services themselves is that they are not trained in non-cancer diseases and problems.


Solution: there should be a national programme of education for all palliative care professionals to be educated and trained in how to care for patients from other relevant diagnostic groups, eg heart disease, chest disease, stroke etc. This should be done in conjunction with the academic centres and also the Royal Colleges.

3.  QUALITY OF SERVICES AND QUALITY ASSURANCE

(a)  Although it is anticipated that the forthcoming NICE guidance for supportive and palliative care will bring new recommendations on targets for these services, there is a major lack of nationally agreed standards and means of assuring quality in palliative care.

(b)  There are three main UK providers of quality assurance at present—HQS (formerly from the Kings Fund); Yorkshire Peer Review; and Trent Hospice Audit Group (THAG). The latter has now been incorporated into HQS as a pilot merger between the organisations. (I have been involved in the development of both THAG and HQS palliative care assurance tools.)


Solution: It is important for the country to adopt one national set of quality measures and quality assurance scheme for palliative care services. I would recommend that the HQS/THAG approach should be compared directly with the Yorkshire Peer review approach (and any other relevant ones) in a formal comparative study and recommendations made nationally, arising from that.

4.  THE IMPACT AND EFFECTIVENESS OF GOVERNMENT POLICY

(a)  It is clear that recent Government policy and directives have been very helpful in clarifying the role of palliative care within cancer. The forthcoming NICE guidance on supportive and palliative care, however, still does not clearly delineate these two areas and much work needs to be done within cancer to educate and prepare professionals for the rise of supportive care. (There is an unfortunate, erroneous and often patronising view from some parts of palliative care that "supportive care" is just palliative care being done by non-specialists. What this view misses is that many of the specialities involved in providing supportive care, eg psychology, physiotherapy, social work etc were established long before palliative care came into being and exist very well outside of its boundaries!)

(b)  The National Service Frameworks have variously made reference to palliative or supportive care, but these have not always been very clear or explicit enough to advise professionals working in non-cancer diseases or with elderly or mentally ill people, how to implement palliative care. There is therefore a real danger of other disease specialties perpetuating the view that palliative care is really just for cancer patients (a view that will not be helped if they read the Hospice Directory 2004 booklet!).

(c)  One problem arising from the close linkage of both palliative and supportive care with the Cancer Plan and the NICE guidance for "adult cancer patients" is that both funding and service developments are implicitly restricted to cancer and cannot flourish in other needy specialties.

(d)  In Sheffield we developed and published many years ago a model for explaining supportive care for chronic diseases, in which it becomes clear how palliative care and other services can co-exist and co-operate. Unfortunately although the Sheffield model has been discussed widely in cancer, it has not yet penetrated into the other fields (it was discussed in the early stages, I believe, in relation to congestive heart failure).


Solution: There should be a national initiative to separate supportive and palliative care from the cancer umbrella, under which they developed but are now being stifled. Thus these fields would be sent to be truly non-specialty based, which would itself improve the issue of equity of access. More importantly, it would allow and coerce other healthcare specialties to invest in palliative and supportive care rather than paying lip-service to them as at present. Palliative and supportive care should, in other words, be seen in the future as operating across all diagnostic groups in healthcare, rather like care of the elderly or paediatrics.

February 2004