Select Committee on Health Written Evidence


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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