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CROSS-PARTY GROUP IN THE SCOTTISH PARLIAMENT ON PALLIATIVE CARE Minute of a joint meeting between
the Cross-Party Group in the Scottish Parliament
on Palliative Care and the Cross-Party Group in the
Scottish Parliament on Cancer Present: In Attendance: Apologies: 1. Welcome & Apologies 2. Minute of last meeting 3. Discussion 3.1 "We need to make realistic estimates of the number of specialist palliative care episodes required, as compared with general palliative care episodes" Discussion led by Professor Frank
Clark, Director Professor Clark thanked both groups for the invitation to speak at this joint meeting and expressed the view that it was vitally important for colleagues in the Scottish Parliament to be kept informed. Although the three issues identified had been highlighted at the palliative care workshops at the 2003 Scotland against cancer conference, he felt that there were presently a number of other very pressing palliative care matters to which he would also like to draw colleagues' attention, in particular the forthcoming launch the following week of the first NHSQIS Specialist Palliative Care National Overview Report. A number of those present had been involved in the peer review of services, and were aware of the content of the report, of which Professor Clark himself had received an advance copy. The report was very positive and would highlight a number of future palliative care priorities and areas that MSPs would wish to take on board. Professor Clark also outlined a recent meeting he had attended with the Chief Medical Officer and colleagues to discuss the lack of a single source of current information on the national provision of palliative care services. While there were no plans to develop a definitive palliative care strategy, as a result of this meeting the Scottish Partnership for Palliative Care had been commissioned by the Scottish Executive Health Department to undertake a broad mapping exercise which would highlight current and future demands for palliative care across the broad spectrum of both cancer and chronic and progressive illnesses. This data would then be mapped against current palliative care provision and the gaps identified. These gaps would then highlight the potential for development of palliative care provision in the future, including the provision of palliative care education to ensure effective workforce planning and appropriate levels of accreditation. A core group would be set up to take this work forward and would engage with many of the agencies currently working with people with cancer and other chronic and progressive illnesses. Q. Ken McIntosh: Re the NHSQIS report - are there any early indications of what the gaps are likely to be? FC: We do not yet know the dimensions of these gaps but we would anticipate gaps in the following areas:
Nanette Milne: The Stuart Resource Centre is an information, therapeutic and social resource for people with multiple sclerosis, families and friends. But there are huge problems for young people with other chronic illnesses. FC: I concur completely and would like to challenge MSPs here by asking you about the availability of respite care for a 40-year-old terminally ill patient with a chronic or progressive condition. Respite care would be provided by a care home which may not always be appropriate, as they have been set up to deal mostly with the elderly. Such people have an equal right to palliative care, but because of low expectations and inadequately developed palliative care services society is failing to fully meet their on-going needs. Dr Jean Turner: Accessing respite services is difficult for anyone but especially so for young people. MS patients require specialist physiotherapy which is not available from the NHS. Patients with skin conditions such as psoriasis have huge distances to travel for specialist treatment. There is a dearth of social work services especially around resources and staff. FC: Another issue is secondary lymphoedema which occurs in 25-38% of women who have undergone breast cancer treatment. A lot of work still needs to be done around lymphoedema care to meet these needs. Marie McGill: Looking at the needs of young people with Huntington's Disease, they have great difficulty accessing services. 700 - 800 receive some form of palliative care from their unpaid carers at home therefore it is vitally important to provide support and acknowledgement for these carers. Q. Ian Gibson: Is there a good model for palliative care needs assessments? Will you be using a specific needs assessment model to complete this? FC: No, there is no definitive model, but models of varying qualities are available. The exercise we propose would be a framework mapping exercise not a 'numbers' exercise, and would consult with specialty advisors in the CMO's department to look at the output of needs assessments in relation to local NHS Board plans. Local authorities would also hold relevant information. Dorothy McElroy: Another issue is once the needs have been identified there is a commitment for resources and staff to follow to develop the services. There is a lack of qualified staff required to fill posts available in palliative care e.g. district nurses, GPs and allied health professionals. FC: This is the challenge. There are not enough consultants being trained UK-wide. There are over 100 vacancies in palliative medicine across the UK and the people are just not there to fill them. Workforce planning cannot be carried out successfully until this diagnostic piece of work has been carried out across Scotland, but it will provoke further questions. Q. Ken McIntosh: Are there spare monies available for palliative care nursing as well as cancer nurses? FC: Yes, via cancer networks if prioritised. Investments have been made available for direct diagnostic treatments but palliative care remains bringing up the rear. There is lots of evidence around the physical aspect of care, but not in palliative care, which happens to be the least evidence-based discipline in medicine. It is essential that the quality of dying should be included in the same agenda as, for example, waiting times. Merely making additional finance available would not in itself resolve current difficulties. To meet the needs of patients we now need new models of care. Health care professionals would all have to embrace changes to the pattern of their working lives but would need time to grow into these roles. Dr Bruce Cleminson: The highest indication
factors leading to hospital admission are pain and symptom control due
to the lack of support systems in place. Long term static conditions are
problematic but cancer should be supported at a faster pace. In Shetland
there is a rapid response social care system whereby patients can return
to their homes within four days of admission with an effective level of
support and appropriate care. FC: I endorse this view and agree that an overview of palliative care education in Scotland in 2004 should be looked at. 3.2 "We should make resources available to allow specialist palliative care support at outpatient clinics, to allow patients with advanced disease a real choice of treatment" Dr Rosaleen Beattie, Medical
Director Dr Beattie felt that future priorities would be based on the NHSQIS
report, and thought that a key question was what specialties wanted from
each other. The chief issue was not about what we do measured against
QIS standards, but about how we do it with multiprofessional skills and
multidisciplinary specialties.
Q. Ken McIntosh: Is provision patchy? RB: Yes - the NHSQIS report will highlight the gaps. Provision is very thinly spread and may be restricted to one hospital or is done on a grace and favour basis. Q. Ken McIntosh: Is there mindset in some areas as to where palliative care should take place? RB: No, not where, but when, as it is thought that palliative care is for end of life. We have to get the message across that palliative care is available for any stage of the illness. Marie McGill: it is heartening that the remit is opening up to other non-malignant conditions and the picture of palliative care in Scotland would change considerably if this were developed. People at every stage of disease are affected and we need to progress towards this. Frank Clark: We must not presume that the conclusion lies with the provision of more specialist clinicians. It will lie with the generalists whose role will change to enable, facilitate, support and raise the awareness of palliative care in order to know when to refer patients for specialist palliative care. RB: Yes - it all comes down to education and the sharing of skills. Q. Ken McIntosh: The mapping exercise must come before strategy and policy. Can we identify any areas where the Scottish Executive can take action now? RB: The clinical standards for specialist palliative care have been universally accepted for specialist palliative care units and agreed by NHSQIS. Review teams assessed the performance of these units against the standards and found that there was a high level of compliance with most of the standards. There are considerable gaps and the review will highlight the fact that many specialist teams and units are currently reaching capacity and this needs to be taken into account when planning services. Again this has a funding implication. Frank Clark: There is a traditional link between cancer and specialist palliative care and this means that services are now provided for some cancer patients who are of lower clinical priority than others with non-malignant disease. Finance is not a first priority as specialist staff are not on the market. Therefore we need to establish priorities in education and target investment in specialist palliative care training for palliative care staff as well as for example, cardiology and paediatric staff. RB: At the moment specialist palliative care is an elite service provided for a few patients - there has to be justice, excellence and equity in the delivery of specialist palliative care in the future. Dr Bruce Cleminson: In Shetland 85% of palliative care is delivered by GPs in the community. We are willing to take this on and enjoy it immensely. This is real medicine so please don't forget us and the service we provide! Dr Stephen Hutchison: We have been trying recently to appoint a specialist registrar consultant but have been unable to secure funding. There are a number of unfilled posts out there so there is also a great need for funding for specialist registrar training. Frank Clark: Only one new specialist registrar qualified in Scotland last year. Due to the very high level of medical education here in Scotland, we train for a UK and international market. We need more specialist registrar consultants coming through the system. 3.3 "Patients should be provided with a real choice of place of patient care and place of death" Susan Munroe, Caring Services Manager
Scotland What do people want? What currently happens to patients with cancer?
The Scottish figures from the Registrar General's office suggest the figure of cancer deaths at home has fallen in the last decade or so from 27.9% in 1989 to 24.63% in 1999. But in the north and east of Glasgow, the place of death of cancer patients (supported at home in partnership with the primary health care team and community specialist palliative care sisters (home care sisters) and with the back-up of a specialist unit) was twice as likely to be at home than the Registrars figures show. An average of 46% died at home over a 14-year period. This would suggest that specialist support does make a great difference. Statistics for Canada are much better than those for Scotland. Why does dying at home not happen?
health care professionals views:
What's happening to help make dying at home become a reality?
What more needs done to enable patients to die at home?
Q. Marie McGill: The holistic approach - can it be done at home? Does this have an impact on the choice of where to die? SM: Yes- the evidence shows that where a holistic service is available with specialist nurse input and where multidisciplinary teams feed in, patients will remain at home. Rhona Baillie: GPs have a genuine fear of palliative care and cannot cope with end of life scenarios therefore there is a great need for funding for the education of these GPs. 40 GPs in Lanarkshire have received such training and now back up district nurses (DNs) all the way. It's a case of taking what's on the ground and expanding their role. Dr Mhoira Leng: Don't forget care in the community and community hospitals - there are 19 such hospitals in Grampian. GPs and nurses are trained to diploma level in palliative care and shared care is of a very high standard. Frank Clark: Yes - we mustn't lose sight of this. It is becoming clear for a number of reasons that the number of acute care delivery institutions will need to be reduced. With appropriate diagnosis, effective pre-admission and discharge planning and management this need not be a problem, particularly with a modernised approach to primary care and intermediate care and a clearer role for care homes and community hospitals. In future specialist palliative care health professionals will take the care to patients in a variety of settings and in so doing they will enhance the skills and knowledge of other health professionals. Taking appropriate care to the patients wherever they are is the real challenge - and will be crucial in addressing the needs of non-cancer patients. Dr Bruce Cleminson: There is published evidence from the 1980's e.g. Derek Doyle, St Columba's Outreach, the Nuffield Foundation, that holistic care at home produces the highest possible quality of life. This stems from the education of and communication flowing between GPs, DNs and the multidisciplinary team, and leads to real 'seamless' care with a real multidisciplinary approach. SM: I agree with you. The Gold Standards Framework will provide the essence of this communication and should help significantly in the near future. Michael McMahon: I remember Dr Martin Leiper telling me of coming across a doctor 12 miles away from his clinic who was also trying to improve communications within his team. This was four years ago and a certain amount of progress has been made since then. Frank Clark: NHSQIS has given very encouraging signals as to how palliative care has come such a long way in such a short space of time. The standards were intended to be aspirational in 3 to 5 years time but the level of compliance is staggering after only one year. Q. Ken McIntosh: Is there anything for the Scottish Parliament to action? Frank Clark: Yes - effective cancer care must be underpinned by effective palliative care, and not just tagged on at the end. The issues talked about tonight highlight the palliative care aspect. Parliament needs to be asking always - what about palliative care? What have the health boards done with the needs assessments? The benefit of meetings such as this helps raise awareness of palliative care and allows us to examine whether or not palliative care is being effectively represented at a high level and is showing evidence of being reflected in its own right. SM: Yes - we also have to look seriously at research, as we need the evidence base. There has been one item researched in the last year in Edinburgh based on palliative care. The Scottish Executive's Health Department Chief Scientist's Office did solicit but no proposals were put forward. Dr Ros Beattie: We need good quality palliative care proposals - funding is a possibility for this research, be it qualitative or quantitative. All palliative care, not just specialist, should be an integral part of all care. So how do we bring palliative care and specialist palliative care together? Where are the beds for patients who do not want to die at home but don't need specialist palliative care? The specialist palliative care standards exclude patients without specialist palliative care needs but we still need to know the level of need for palliative care! We need research and education. Frank Clark: One of the many impediments to doing research is time. The NHS cannot afford to backfill. Money could be invested to allow individuals to be freed up to carry out this important research. Hazel Taylor: We have to create a capacity to allow backfill to be resourced. We should be encouraging NHS Boards to support local MCNs, who in turn support their local project / working groups. Out of five health boards in the West of Scotland, only one financially supports its local MCN. Drawing the discussion to a close, Michael McMahon MSP thanked everyone for attending the meeting which had been most stimulating and informative. He noted with interest the issues raised and thanked in particular members who had travelled from as far away as Shetland, Inverness and Aberdeen to be present. Michael wished then and everyone else a safe journey home. Ken McIntosh MSP thanked members for their contribution, stating that he would make no attempt to sum up the proceedings, as there was no need to. Issues had been raised and noted and hopefully would be taken on board. Minutes of the meeting would be circulated in due course to members of both the Cross-Party Group on Palliative Care and the Cross-Party Group on Cancer. 4. Any other competent business Recent situations:
There being no further business, the meeting closed at 7. 05 p.m.
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