Memorandum by Professor Sam Ahmedzai (PC
1. ISSUES OF
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
forprofessionals, 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
(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
(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 presentHQS (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
(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
(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.