APPENDIX 22
Memorandum by The Royal College of Physicians'
and The Association for Palliative Medicine of Great Britain and
Ireland (PC 26)
1. INTRODUCTION
1.1 The Royal College of Physicians is the
medical Royal College responsible for the specialty of Palliative
Medicine. Palliative Medicine is the medical component of specialist
palliative care. The medical specialty is relatively young, being
recognised in 1987. However, there are now in the whole of the
UK over 260 consultants in palliative medicine, 166 specialist
registrars and at least 300 non-consultant career grade doctors
working in the specialty. There are 208 consultants in England
alone. The specialty association, the APM, has over 800 members
who are doctors working in the specialty or with a particular
interest in it.
1.2 Eighty per cent of the 3,000 specialist
palliative care beds are in the voluntary hospices. The average
NHS percentage funding for this inpatient activity is currently
just over 30%, the rest being provided by charitable means. We
have used the terms voluntary and charitable in this context interchangeably.
1.3 It is inevitable that several of the
particular issues being examined by the Select Committee itemised
below will overlap both in discussion of the relevant information
and specific recommendations.
2. ISSUES OF
CHOICE IN
THE PROVISION,
LOCATION AND
TIMELINESS OF
PALLIATIVE CARE
SERVICES, INCLUDING
SUPPORT TO
PEOPLE IN
THEIR OWN
HOMES
2.1 Palliative care is broader than care
given during the terminal phase of a person's last illness. It
represents an approach which improves the quality of life of patients
with any life-threatening illness. It is also concerned with the
wider aspects of end of life issues. Palliative care may be specialist
or generalist, where the former is provided by professionals who
do nothing else but palliative care. Generalist palliative care
is provided by the Primary Health Care Team (PHCT) in the community
or by the teams of consultants in other specialties in district
general hospitals.
2.2 Provision of palliative care has been
predominantly for cancer patients. It is variable in terms of
capacity, staffing, resources and integration between the NHS
and voluntary sectors. Furthermore, the adequacy of palliative
care provision depends greatly on the capacity of other health
and social care services available in the local health economy.
Choice is inevitably restricted if capacity is limited or demand
is excessive due to inadequate hospital or community generalist
palliative care provision. It is therefore to be expected that
needs assessment for palliative care will be greater where acute
hospital bed demands are greater.
2.3 Patient choice implies patient awareness
of the existence of palliative care services. This in turn demands
better informational structures than currently prevail. Patient
choice regarding location and timeliness depends on both availability
but also on acceptability to patients. Most patients will have
a diagnosis of life-threatening illness confirmed in hospital.
Palliative care may be highly appropriate at that point of diagnosis,
but be unacceptable to the patient for obvious psychological reasons.
If this is the case, patient comfort, pain control and reduction
of distress can still be improved by the influence of a hospital
palliative care team. This influence can be direct or indirect,
by provision of educational support to the "front line"
teams responsible for the patient. At present consultant support
for hospital palliative care teams is inadequate due to manpower
shortages.
2.4 Once patients have accepted that cure
is unlikely, most wish to benefit from palliative care in their
own homes. Indeed 90% of the last year of life is spent at home.
This demands the provision of good palliative care in the community.
Although good PHCTs are capable of excellent palliative care,
it is unreasonable to expect familiarity with all aspects of specialist
care. Access to specialist medical and nursing opinion therefore
becomes mandatory. At present the availability of Clinical Nurse
Specialists (sometimes known as Community Macmillan Nurses) is
reasonable in some areas but often not in inner cities. Furthermore
consultant back-up is frequently inadequate due to manpower shortages.
2.5 Timeliness of palliative care provision
is variable. Hospice/palliative care philosophy regards the relief
of distress as a matter of urgency. Where hospital palliative
care teams are working well, there is often a same working day
response to referral. This may be more difficult to achieve in
the community, although most specialist community services would
expect to make contact with newly referred patients within 2-3
working days.
2.6 Availability of a specialist palliative
care bed will clearly depend on issues of capacity and throughput.
Figures for capacity vary in different localities, but 50 beds/million
population was felt to be a reasonable baseline in the 1980s when
only cancer patients were being considered. Throughput depends
on average length of stay and the ability to discharge patients
back to their own homes safely, if that is what they and their
carers wish. Throughput figures of 20-30 admissions/bed/year would
be typical of most units, whether voluntary or NHS. The upper
figure would be associated with an average length of stay of less
than 10 days. Clearly, this rate of throughput is more typical
of an acute hospital rather than a nursing home. It is in this
area that public perception of an unhurried, hospice pace of care
may be illusory.
2.7 Choices for patients with non-cancer
diagnoses are far more restricted, particularly regarding specialist
inpatient palliative care. Some hospital palliative care teams
have up to 30% of non-cancer referrals, but this figure drops
to less than 10% for inpatient hospice beds. There are several
reasons for this, including limited capacity, differing expectations
from referring GPs and consultants, different disease trajectories,
different treatment expectations from patients and lack of expertise
and confidence in the specialist units themselves.
2.8 At present, governmental strategy regarding
end of life care is dependent on disease specific National Service
Frameworks, where these exist. This has produced policy fragmentation
and fails to acknowledge and capitalise on the existing voluntary
structures for providing palliative care. There is the potential
for conflict between centrally determined strategy and locally
implemented services. A Strategic Health Authority (SHA) overview
is therefore clearly necessary.
2.9 Recommendations:
— Governmental co-ordination of end
of life strategy.
— A standardised needs assessment mechanism
for both cancer and non-cancer patients, which is applied by PCTs
but monitored at SHA level.
— Increased national training numbers
for palliative medicine backed by specific central funding.
— Further educational integration of
palliative medicine into undergraduate and postgraduate curricula.
This includes the development of non-cancer pain control into
the general practice curriculum.
— Acknowledgement of the value of palliative
care philosophy in non-cancer National Service Frameworks.
3. EQUITY IN
THE DISTRIBUTION
OF PROVISION,
BOTH GEOGRAPHICAL
AND BETWEEN
DIFFERENT AGE
GROUPS
3.1 The patchiness of distribution of hospice/specialist
palliative care units depends largely on the ability of local
residents to mount capital appeals to build charitable hospices.
Once the hospice has been built, then the need to find revenue
funding streams has often been the cause of friction between the
charity and the local NHS commissioners. The result is that wealthier
locations often have better facilities. This has been compounded
by the fact that many charitable hospices are overtly Christian
foundations. Areas which have a high non-Christian ethnic population
may therefore have less financial backing for voluntary facilities.
In spite of efforts by some charitable hospices to be culturally
neutral, the uptake of specialist palliative care by ethnic minority
communities is lower than that of the indigenous population. Whether
this effect is due to cultural exclusion or to a desire on the
part of minorities to "care for their own" is a matter
for further study.
3.2 Equity of distribution was part of the
analysis which most of the English cancer networks took into account
when drawing up their specialist palliative care Local Investment
Plans. Although this mechanism could only strive for equity throughout
a given network locality, it has meant that there has been an
attempt to level up standards across each network. This may well
have implied that less new resource was given to well-endowed
areas and relatively more to needier parts of a network.
3.3 Palliative care is numerically an activity
that is applicable to the middle-aged and elderly population.
Life-limiting and terminal illness in children is both much rarer
and more specialised. Furthermore the spectrum of diseases which
brings about the need for childhood palliative care is quite different
from adults. GPs need to be familiar and expert with the entire
age range of their patient list. Paediatricians have a different
Royal College. At present the RCP has been concerned only with
adult palliative care facilities. The APM however, does have a
small number of members who specialise in paediatric palliative
care. Furthermore, the Diploma of Palliative Medicine offered
by the University of Wales College of Medicine at Cardiff has
been running a paediatric option alongside the adult diploma and
MSc.
3.4 There is concern that palliative care
for adolescents and for the very elderly is not adequate. Neither
group is numerically large, but this unfamiliarity compounds the
unsatisfactory nature of current services. Both the RCP and the
APM believe that new models of care need to be developed for these
two groups. This should involve both generalist and specialist
services. Many hospice units and community specialist advisory
services have an outreach support function to nursing homes. This
may relate to individual patients and also be educational support.
This relationship between specialist providers and the Nursing
Home Sector should be encouraged and expanded. Similarly, several
consultant palliative physicians have developed local supportive
and advisory relationships with their paediatric colleagues that
can contribute to more effective palliative care for children
and adolescents. This does not imply taking over the care from
either paediatric teams or the PCHT.
3.5 Some charitable hospices have entered
into formal partnership with local emerging children's facilities.
At present there would seem to be only limited advantages to doing
this, particularly when the children's hospice will inevitably
need to look to many separate PCT commissioners for revenue support
because their catchment will generally be wider than their adult
counterparts.
3.6 Recommendations:
— Where inequitable distribution of
services is due to scarcity of resources, then funding needs to
be targeted specifically to those areas.
— New models for services for the very
elderly and adolescents should be developed.
4. COMMUNICATION
BETWEEN CLINICIANS
AND PATIENTS;
THE BALANCE
BETWEEN PEOPLE'S
WISHES AND
THOSE OF
CARERS, FAMILIES
AND FRIENDS;
THE EXTENT
TO WHICH
SERVICE PROVISION
MEETS THE
NEEDS OF
DIFFERENT CULTURES
AND BELIEFS
4.1 Poor communication skills of clinicians
often cause dissatisfaction with clinical services, and gives
rise to complaints. We believe that good communication may be
innate in many clinicians, but can be improved in others with
appropriate training. Without such training these skills tend
to deteriorate over time. Communication skills do not necessarily
imply spending more time with patients, although time constraints
need to be managed. The Hospice/Palliative Care Movement has always
valued sensitive and truthful communication, and in general is
an exemplar. We believe that resources should be found to encourage
the dissemination of such skills throughout the clinical professions.
Sensitive communication means active listening as well as imparting
specific information. It does not mean insensitive and brutal
truthfulness before a patient is ready to hear unwelcome news.
Neither is inappropriate frankness excusable as part of defensive
practice. In short, good communication is the essence of patient
centred care.
4.2 Where linguistic difficulties cause
poor communication, then the service requires interpreters. Although
family members can often fulfil this function, care is required
in avoiding substitution of the family's wishes for those of the
patient. Similarly, communication must be provided within the
cultural and religious context of the patient.
4.3 Although palliative care considers the
patient's carers, family and friends as appropriate recipients
of care, there is no doubt that the patient is the primary target
for such care. It is not acceptable to disclose diagnostic and
prognostic information to third parties without some form of consent
from the patient. Good palliative care will always seek to find
consensus in this area particularly when there are potential conflicts.
4.4 Recommendations:
— Funding should be made available
for the dissemination of good practice in communication skills
from specialist palliative care to generalist colleagues.
— Medical revalidation should include
satisfactory participation in communication skill workshops.
— Resources should be found to provide
each locality with appropriate lists of interpreters.
— Education is required to respect
the ethnic, cultural and religious differences now found in our
multicultural society.
5. SUPPORT SERVICES
INCLUDING DOMICILIARY
SUPPORT AND
PERSONAL CARE
5.1 Support services for patients in the
community vary greatly throughout the country. Palliative care
patients need to access generic services which may be in short
supply. Indeed, generic community nursing services are not available
24 hours a day in many localities. This frequently leads to inappropriate
attendance at A&E Departments, or admission to hospital or
hospice, when better community support could have achieved satisfactory
home care.
5.2 The increasing use of GP deputising
services has also posed difficulties in providing reasonable generic
or specialist advice out of hours. This is being addressed by
implementation of schemes such as the Gold Standards Framework
Project. Features of this scheme include better patient data transfer
between the PHCT and the deputising service, and availability
of specialist advice to the out of hours generic services. Education
and training at a local level is required for doctors working
in the deputising services. This can be provided by specialist
hospice/palliative care units.
5.3 There is heterogeneity of Continuing
Care provision and funding across the country. There are often
differences in interpretation of Continuing Care criteria between
PCTs, and certainly differences in available NHS funds to support
community care packages. Speed of assessment for social care packages
has now been addressed by the Delayed Discharges Bill. However,
this does not apply to voluntary hospices. Most hospices believe
that they now have slower assessment and therefore consequently
delayed discharges.
5.4 Often the community personnel who provide
personal care under continuing care arrangements are the same
as those providing it via social services. The source of funding
is the only difference. Some areas have difficulty in care provision
because of labour shortages, especially over public and school
holidays. This may represent a facet of the demographic problem
of too few professional carers in the near future for the increasing
numbers of elderly infirm in the community.
5.5 Recommendations:
— Provision of generic community nursing
services across the country on a 24 hours a day basis.
— Clarification and standardisation
of continuing care criteria across all PCTs.
— Monitoring of GP deputising service
patient calls for palliative care.
— Continued support for the Gold Standards
Framework scheme.
6. QUALITY OF
SERVICES AND
QUALITY ASSURANCE
6.1 Voluntary hospices are currently subject
to National Care Standards Commission (NCSC) inspection, which
will soon be subsumed by the Commission for Healthcare Audit and
Inspection (CHAI). Although such inspection is clearly desirable,
it is time consuming, bureaucratic and expensive. The systems
have been designed to be applicable across the nursing home and
private hospital sectors and sometimes result in a stifling of
innovation and flexibility. Instances include reliance on policy
and procedure documentation and inflexibility regarding interpretation
of pharmaceutical regulations. Examples of more custom made quality
assurance programmes for specialist palliative care include Health
Quality Service (HQS) and Quality by Peer Review in specialist
palliative care (QPR) schemes. Both of these were designed specifically
with palliative care in mind, and are far more interested in direct
patient care quality measures.
6.2 The Hospice/Palliative Care Movement
has grown from patient and carer demands. It has recently developed
specific models for incorporating user involvement and feedback
into service planning and management. When the population of patients
and carers is clearly vulnerable and frail, such involvement poses
particular considerations and problems of amplifying the user
voice.
6.3 Recommendations:
— Collaboration between voluntary and
statutory quality assurance organisations, to develop more emphasis
on patient care quality measures rather than paper driven procedures.
— Implementation of standards to be
derived from the forthcoming NICE Supportive and Palliative Care
Guidance.
— Further development of user involvement
models which will reflect specific palliative care issues.
7. EXTENT TO
WHICH SERVICES
MEET THE
NEEDS OF
DIFFERENT AGE
GROUP AND
DIFFERENT SERVICE
USERS
7.1 This has been covered in section 3.
8. GOVERNANCE
OF CHARITABLE
PROVIDERS, STANDARDS
OF ORGANISATION,
LINKS TO
THE NHS AND
SPECIALIST PROVIDERS
8.1 As far as medical care is concerned,
the RCP and APM do not distinguish between care given in the voluntary
and NHS sectors. The RCP has produced both generic and specialty
specific "Good Care Standards" which are intended to
evolve as templates for quality control and governance. We see
no reason why the voluntary sector should not be included for
instance in the peer review process for cancer services currently
taking place within the NHS, which includes review of palliative
care for cancer patients.
8.2 At least half of all consultants in
palliative medicine have substantive NHS contracts even though
they may be responsible for the care of patients in voluntary
beds. We welcome this as entirely appropriate integration across
the two sectors. Such sharing of consultant staff facilitates
transfer of patient information and makes possible a truly seamless
service for patients. We look forward to all other professions
working across the two sectors. This particularly includes nurses,
social workers and therapists. We believe that governance should
be based on professional considerations rather than line managerial
relationships. We think that neither sector need be apprehensive
about loss of managerial control as long as patient care remains
the centre of attention. Shared standards allows for satisfactory
appraisal, and where necessary appropriate disciplinary procedures.
8.3 The voluntary hospices all provide specialist
care for patients free of charge. The vast majority of patients
have been investigated in the NHS with only a small minority coming
from private hospitals. The voluntary sector is grateful to be
able to receive pharmaceutical, laboratory, radiological and some
transport services from the NHS free of charge. However, one area
where services are both fragmented and expensive is information
technology. Both NHS and voluntary providers receive better clinical
information from their general practice colleagues than secondary
care. Inadequate information is a barrier to best clinical care.
We support efforts to develop an integrated care record system
(ICRS) which will be operational between primary, secondary, tertiary
and voluntary care providers. This will require very considerable
central investment.
8.4 Recommendations:
— Formal recognition that voluntary
hospices are treating NHS patients under appropriate service level
agreements and governance arrangements.
— Complete professional integration
across the voluntary and statutory sectors.
— Development of specialty specific
standards.
— Development and investment by government
in an ICRS.
— Inclusion of the voluntary sector
palliative care providers in such a system with no prohibitive
cost for NHSnet connectivity.
9. WORKFORCE
ISSUES INCLUDING
THE SUPPLY
AND RETENTION
OF STAFF
AND THE
QUALITY AND
ADEQUACY OF
TRAINING PROGRAMMES
9.1 From a medical perspective, there is
unsatisfied demand for consultants in palliative medicine. At
least 100 posts are unfilled in England alone. There are also
70 newly funded posts as a result of the 34 English cancer networks'
investment plans. Some areas of the country have so few consultants
that they are not in a position to be able to train specialist
registrars (SpRs) even if training numbers (NTNs) and funding
were to be available. There is real danger that several small
specialist units will not be able to continue functioning as such
if the medical workforce issues are not addressed. This particularly
affects small voluntary hospices, but there are also many cancer
units (district general hospitals) where there is no palliative
physician presence.
9.2 As mentioned above, most SpRs in palliative
medicine are female. There is therefore a tendency for their training
to be flexible (part-time), to take on average 6.5 years rather
than the full-time four years, and for consultants once appointed
to wish to work flexibly. There is also an impression that once
specialist registration is achieved, these part-time doctors are
more geographically fixed than their full-time counterparts, probably
due to family pressures.
9.3 Although there is evidence that "burn-out"
is no higher in palliative medicine than other related specialties,
there seems to be a worrying trend in difficulty with retention
of consultants in particular posts. Both wastage due to long term
ill health and premature retirement are powerful factors in the
mathematical modelling to predict an increase in total consultant
numbers.
9.4 The new consultant contract and adherence
to the European Working Time Directive (EWTD) both exacerbate
the current shortage in consultant numbers in palliative medicine.
A survey performed by the APM in the last few years showed that
consultants were working on average over 13 sessions (programmed
activities of the new contract) per week. This is now no longer
acceptable by the EWTD criteria, and may well be contributing
to low morale and poor retention.
9.5 Fast track training or mediated entry
to the specialist register has been proposed for non-consultant
career grade (NCCG) doctors. However, mechanisms for achieving
this have yet to be agreed by the new Postgraduate Medical Education
and Training Board (PMETB). We believe that such a scheme is likely
to take well over a year to set in place.
9.6 Meanwhile, we would like to explore
ideas of providing specialist opinion and advice via nurse specialists,
nurse consultants, nurse prescribers, physician's assistants and
GPs with a special interest (GPSIs) in palliative medicine. To
date none of these initiatives have been explored in collaboration
with the RCP and APM. Both the RCP and the APM recognise that
palliative care is an area where multiprofessional working has
been the norm for many years. We have seen the benefits for the
medical specialty of the structured approach to training now in
place for medical consultants of the future. We strongly support
a similar process for our nursing counterparts, as we believe
that clear entry requirements, an explicit curriculum and demonstrable
assessment of competencies will improve patient care and enhance
the standing of clinical nurse specialists and consultants in
the future.
9.7 Recommendations:
— Central funding for NTNs in areas
where there are particular shortages of consultants.
— Doubling of consultant numbers by
2010, especially as there is to be expansion of non-cancer workload.
— Financial assistance to the voluntary
sector to implement the new consultant contract.
— Development of better support structures
for newly appointed consultants to improve retention.
— Targeted recruitment of consultants
to shortage areas of the country.
— Development of mediated entry to
the specialist register for highly experienced NCCG doctors.
— Development of the multiprofessional
team to include more effective working of nurse specialists, prescribers,
consultants, GPSIs and physician's assistants provided that appropriate
supervision is in place. Such development should take place in
collaboration with the RCP and APM.
— Definition of palliative care nursing
specialist and consultant competencies and qualifications.
10. FINANCING,
INCLUDING THE
ADEQUACY OF
NHS AND CHARITABLE
FUNDING AND
THEIR RESPECTIVE
CONTRIBUTIONS AND
BOUNDARIES
10.1 Palliative care has become an essential
part of health care over the last twenty years. For an essential
service to be reliant on over 60% charitable funding each year
for revenue expenditure seems unwise, unjust and an abdication
of responsibility on the part of government. The Treasury cross-cutting
review may determine that it is unlawful for such essential service
provision to be charitably funded after 2006. Much of the specialist
palliative care currently provided by voluntary hospices comes
into this category. We believe that the Government must be honest
about the true cost to the community of excellent palliative care,
whether this funding comes from direct taxation, through the voluntary
hospices with NHS service level contracts, through direct provision
by the NHS or via indirect regular voluntary contributions from
the community served.
10.2 The voluntary hospices have hitherto
guarded their independence so that they could determine their
own priorities. However, financial sustainability may not be practicable
in the future for a sector which currently needs to generate between
£200-£300 million each year. Furthermore, the NHS contribution
of approximately 35% does not encourage effective and efficient
long-term planning. For this reason we suggest 100% funding for
the voluntary sector for agreed core services.
10.3 The activity of cancer network palliative
care strategy development and investment planning recently undertaken
has proved to be feasible and productive in most localities. The
commitment of time and energy by clinicians has demonstrated that
many of the previously existing barriers to service development
can be overcome. However, there is a danger that this function
will fail without proper funding of the network infrastructure.
Furthermore, it is notable that it has been necessary to construct
a National Partnership Group to review, approve or clarify and
modify network investment plans. This implies that the process
of ring-fencing funds for palliative care was desirable, and that
devolution to PCT level was inadvisable, in order to ensure effective
spending of extra resources.
10.4 Recommendations:
— Full funding for agreed core services.
— Development of Network strategy management
infrastructure.
— Funding for Network administrative
functions from SHA budget.
11. THE IMPACT
AND EFFECTIVENESS
OF GOVERNMENT
POLICY INCLUDING
THE NATIONAL
SERVICE FRAMEWORKS,
THE CANCER
PLAN AND
NICE RECOMMENDATIONS
11.1 Generally, we welcome all of these
initiatives in as much as they place patient centred care in the
forefront of clinical services. We feel that the NSFs have not
yet gone far enough in integrating palliative care ideas into
non-cancer management. However, the Cancer Plan and Calman/Hine
Report have been important as stimuli to modify the previously
prevailing philosophy of care. We welcome the inclusion of palliative
care as an essential part of routine care and general clinical
education. We detect a clear paradigm shift in societal attitudes
towards accepting death as both normal and inevitable, and that
a painless and distress free death is to be aspired to and expected.
11.2 The development of a co-ordinated Government
approach to palliative care across all health contexts would improve
both impact and effectiveness of policy. A single minister of
cabinet rank, as in Canada, is one possibility. So far the desirable
integration of health and social care at government level does
not seem to have improved service provision locally.
February 2004
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