Palliative Care
We come now to the members' business debate on motion S1M-958, in the name of Michael McMahon, on palliative care. The debate will be concluded, without any question being put, after 30 minutes.
Motion debated,
That the Parliament welcomes the establishment of the Cross Party Group on Palliative Care; welcomes the current priority status in the NHS in Scotland for cancer services; recognises that, despite improvements in the treatment of some cancers, the overall figures for cancer survival remain poor by international standards; believes that this demonstrates the need for more attention and resources to be focused on palliative care; further notes that palliative care aims to control pain and other distressing symptoms in order to achieve the best possible quality of life for patients and their families; notes that people with chronic and progressive conditions other than cancer also have palliative care needs, and calls upon the Scottish Executive to confirm that palliative care is adequately included in the developing strategies for cancer care and for care of those with chronic and progressive illness in Scotland.
I want to start this all too short debate by taking time to thank members from all sides of the chamber for supporting the motion in my name, which was lodged some months ago when the Scottish Parliament's cross-party group on palliative care was established.
Like many people, I was not always involved in the palliative care movement. It was only when a family member faced suffering from cancer that I took an interest. My activity grew from there. I was pleased, shortly after being elected last May, to be introduced to Margaret Stevenson, director of the Scottish Partnership Agency for Palliative and Cancer Care, who discussed with me the possibility of establishing a cross-party group to raise palliative care's profile in Parliament.
It is vital that we do that. A society, it is argued, can be judged on the way in which it cares for the dying as well as the way in which it cares for the living. The chamber has echoed with many important debates on health care in the past year and no doubt will continue to do so, but I am pleased that we have the opportunity to examine today our record on palliative care.
Sufferers from many illnesses require palliative care, but I want to consider one predominant illness to highlight the need for such care. We recognise that the incidence of cancer in Scotland is rising despite advances in treatment. The majority of people who have cancer will not be cured. As the Imperial Cancer Research Fund recently publicised, one in three people in Scotland will develop cancer in their lifetime and 60 to 70 per cent of them will require palliative care. Sadly, one in four will die from the disease. In 1999, 14,688 Scots died from cancer.
Palliative care aims to control pain and other distressing symptoms, to help patients and families with emotional upset and the practical problems that they face and to help people deal with the spiritual questions that might arise from their illness. It also seeks to help people to live as actively as possible despite their illness and to support families and friends following the loss of a loved one.
We know that people who have cancer report in the last year of life a high incidence of problems including physical symptoms—such as pain and breathlessness—and psychological symptoms, such as depression. Unfortunately, studies show that such symptoms are often not well managed and, as a result, people suffer unnecessarily in the advanced stages of their illness. Knowledge of how to manage the symptoms effectively exists—it has been developed by health professionals who specialise in palliative care, but it is not yet universal practice.
Most of us would prefer to pass on at home among family members. However, the latest figures show that in 1999, only a quarter of people who died with cancer did so at home. Scotland needs effective palliative care provision to enable more people to die in their place of choice and to be as comfortable as possible in their last days.
As we know, palliative care in Scotland is provided mainly by voluntary services, with a small number of national health service hospices also supporting that vital work. Of the 15 hospices in Scotland, 13 care mainly for adult cancer patients. There is one specialist AIDS hospice—Milestone House, the work of which David McLetchie highlighted recently—and one children's hospice, Rachel House, which is an exceptional national resource that is based in Kinross. Such hospices provide specialist palliative care through in-patient support and day and home care services. They are increasingly integrated with the national health service and provide outreach facilities to hospitals and primary care teams.
Specialist palliative care nurses in hospitals, Macmillan and Marie Curie nurses, general practitioners and district nurses also provide palliative care as part of their normal duties. It is important to acknowledge the significant and vital work of the many thousands of health professionals throughout Scotland who provide support to those in need and their families during difficult times. However, although I recognise the commitment of the Executive and local health boards—including Lanarkshire Health Board—we must seek constantly to examine how provision can be improved.
The top priority is to make sure that health boards and NHS trusts ensure that palliative care is available to all those in need, including those who have conditions other than cancer. Let us remember that more palliative care does not always mean more hospices—it can mean better support from the NHS for existing hospices and a greater spread of palliative care principles and practice in other care settings. The Executive must seek to increase the level of palliative care knowledge and awareness among all health professionals who care for people with progressive, life-threatening conditions, whether in hospital, at home or in nursing or residential care.
The Executive must also continue to examine funding arrangements to support the work of voluntary hospices. Health boards have been asked by the Executive to fund about 50 per cent of the agreed costs of adult voluntary sector hospices, so it is a matter for regret that the average contribution last year was 40 per cent. The contribution for some hospices, however, was as low as 31 per cent.
There must also be greater co-ordination between health boards and voluntary sector bodies such as Macmillan Cancer Relief and Marie Curie Cancer Care, so that expertise is shared in developing local strategies for palliative care.
Moreover, the Executive must examine the level of palliative care support in hospitals. I note that it is not yet commonplace for hospitals to have fully staffed specialist palliative care teams, despite the very welcome increase in staffing levels in recent years. Increased services to enable people to be cared for at home, if they wish to remain there, should be a goal of the Executive and Parliament. Speedy provision of equipment, 24-hour community nursing services, access to specialist palliative care services and respite and support for carers and families must be achieved.
Palliative care is a vital support, which should be open to every Scot who suffers from an incurable progressive illness. Although we recognise the significant advances in recent years in both cancer care treatment and palliative care provision, as my motion states, it is important that palliative care remains a priority for the Executive and that further development of palliative care is undertaken. My colleagues in the cross-party group and I will pursue the issue. I look forward to the rest of the debate and the minister's response.
I apologise for the thin presence of SNP members tonight. As members will know, my colleagues are on their way to Inverness—perhaps we will all need palliative care come Sunday morning.
I congratulate Michael McMahon on securing the debate and on the formation of the cross-party group on palliative care. I speak as a former volunteer and member of staff at Marie Curie Cancer Care, which cared for my aunt in her dying days.
Scotland must accept that, in many senses, palliative care is the future of medicine. We have an aging population. Medical advances keep many of us alive much longer than was previously the case. However, those medical advances bring their own problems in the need for palliative care at the end of life. We must be careful not to medicalise the end of life. We must not turn death into a medical event rather than an end-of-life event. That is why palliative care is very different from medical care.
The health priorities and strategies of the Executive must reflect the need and desire of many people at the end of their lives to die in their own home rather than in a hospital. At the cross-party group today, we heard that a bed in a teaching hospital costs £1,000 a day, a bed in a national health service palliative care unit costs £350 a day and the services of a Macmillan home care nurse cost £312 a day. On the bases of cost and what patients want, palliative care should be prioritised in the Executive's health strategy.
Another point that was raised at the meeting of the cross-party group was that there is no Scottish Executive guidance note to social workers that specifies palliative care as one of their roles and gives them guidance on how they should provide that service.
It is important that palliative care should be regarded as part of a joined-up service that involves the health service, care in the community, social workers and the voluntary sector. That is how the system works—we must ensure that that continues to be the case in the priorities and strategies of the Executive.
I am particularly pleased to have the opportunity to speak in this important debate on palliative care and I congratulate Michael McMahon on setting up the cross-party group.
The aim of the group should be to ensure that the awareness of palliative care is raised throughout Scotland and that unmet need is highlighted and addressed through palliative care teams in each health board area.
We must improve that vital area of care by sharing best practice and increasing its availability to those who need it. The work of the cross-party group can assist organisations such as the Scottish Partnership Agency for Palliative and Cancer Care and the debate will go a long way to raising awareness of the merits and availability of care in Scotland. In that respect, I fully support Michael McMahon's motion, which sets out the cross-party group's priorities very well.
However, I want to concentrate on the awareness of the benefits and scope of palliative care, not only among the general public, but among Scotland's health professionals. The European Association for Palliative Care published its definition of palliative care as long ago as spring 1989. The part of that definition that is most relevant to my comments is that palliative care
"offers a support system to help the patient live as actively as possible until death and help the family cope during the patient's illness and in bereavement".
It is vital that we get that message across. A UK survey on hospices that was published in August by Marie Curie Cancer Care found that, mistakenly, most people see hospices as depressing places where patients go to die. Furthermore, the majority of people do not realise that half the patients who are treated in a hospice go home after their stay—indeed, the majority of patients do not die there.
We must highlight the fact that a wide range of care is available to control the symptoms of terminal illness and help people have a better quality of life. Marie Curie Cancer Care says that often doctors and nurses delay referring patients for hospice care because they do not think that the patients are ill enough.
However, many hospices have day centres and half the patients go home after a stay in hospice. What is more surprising is that only half the public were aware that hospices offered counselling and welfare support services. We must make more health professionals aware of the availability of palliative care teams to ensure that more terminally ill patients are given access to the care that they need to improve their quality of life. Such care is highly skilled and relies on the dedication of the professionals who are involved in managing the symptoms of terminal illness.
By making more people aware of the scope of palliative care, we will raise awareness greatly. When that is done, we must ensure that the resources exist to meet the needs of Scots who have terminal illnesses. That twin-track aim is summed up in the group's request to the Scottish Executive at the end of Michael McMahon's motion.
I join my colleagues in congratulating Michael McMahon on the formation of the cross-party group on palliative care and on securing the debate. At this point, I should declare an interest, as I am a member of Strathcarron Hospice and former chair of its management committee.
Members might be interested in some background, as palliative care is a success story in Scotland. In the 1970s, the Scottish Health Education Council, which was the predecessor of the current Health Education Board for Scotland, put together a team to hold seminars across Scotland on palliative care. As a GP and psychiatrist, I had the privilege of participating—along with the late Dr Dick Parry—in that early attempt to improve palliative care in Scotland. At about the same time, the first hospice in Scotland—St Columba's Hospice—was founded. As Michael McMahon said, there are now 15 hospices in Scotland, which shows how far we have come with the help of the hospice movement.
Although it is extremely rare for me to praise a Conservative minister, members might not be aware that Michael Forsyth was persuaded by Tom Scott, the first director of the Scottish Partnership Agency for Palliative and Cancer Care, to guarantee that the Government in Scotland would match, pound for pound, money donated by the public. That was much to the dismay of the civil servants who were present at the time.
The legacy of that decision has been a strong underpinning of the most effective voluntary health movement of the 20th century in Scotland. Although, as Michael McMahon said, the figure for average contributions is now down to 40 per cent, the Scottish hospices have been largely protected from some of the difficulties faced by English hospices.
However, there is still much to do to build on that success story, and I will illustrate one way forward with examples from my constituency. The Forth Valley Health Board, with initial support from the Macmillan Cancer Relief Fund, has developed the post of a co-ordinating general practitioner, currently Dr Cath Dyer. She has already done much to assess the needs of primary care teams and to develop, through training, their capacity to provide high-quality care.
The care provided by primary care teams is absolutely vital if we are to meet the aspirations of most of our citizens that they should die at home, not in a hospital. As Michael McMahon said, 70 per cent of people die in hospital.
Simple measures can make a difference. My practice had two syringe drivers for delivering pain-relieving drugs. The local hospice also supplied syringe drivers to any practice that needed them. I urge the minister to consider using some of this year's inevitable underspend on one-off capital equipment of that sort. That would make a disproportionate difference in improving the end of many of our citizens' lives.
Some measures are more complex. The provision of effective, 24-hour-a-day-care in the final days or weeks of life, when dignity is a vital part of the patient's life and the lives of their families, is a vital part of coping with terminal illness. That 24-hour-a-day-care is only starting to develop and requires complex team arrangements. Those teams need training and support of the sort that can be provided only centrally or through an agency such as the Scottish Partnership Agency for Palliative and Cancer Care. I have referred to that agency on a number of occasions; it should be assisted to develop benchmarks for practice in our health board areas and to promote good practice through a database.
Another example of good practice is the exchange of staff between Strathcarron hospice and Falkirk royal infirmary. That exchange spreads good practice in the hospice but, importantly, promotes mutual respect and understanding between the traditional NHS hospital and the hospice. The children's hospice is in my constituency and I am aware of the good work that it does. I welcome the fact that it is working with others to develop a second children's hospice in the west of Scotland.
In conclusion, I will pursue the theme to which I keep returning in all health debates. The primary care team could have the capacity to provide excellent palliative care over and above the already good palliative care provided by many teams, but it will need more staff, good training and equipment. That is possible, practical, achievable and desired by all our communities and I commend it to the minister along with Michael McMahon's motion.
The debate was always going to be worth having, but it is considerably more so for my having had the pleasure of hearing Dr Simpson say something vaguely flattering about a Tory politician. I thank him hugely for that. On a more serious note, Dr Simpson's level of expertise is welcome in the debate.
Politicians are expected to be able to rise to their feet and make speeches and give addresses with ease and professionalism whenever called on to do so. The hardest address that I have ever given was at the funeral service of one of my greatest friends, who died not long before the Parliament was established; a matter of months after winning the exhausting hill race on our local gala day. He left behind two children barely into their teens.
Everyone in the chamber and many people beyond will be aware that early death through cancer and other incurable diseases touches almost everyone in the land. One of the last things that my friend said to me was to ask me, when I got into Parliament, to do everything that I could in that field. I was therefore absolutely delighted to see the proposal to form a cross-party palliative care group. Like everyone else, I congratulate Michael McMahon on the work that he has done. I was even more delighted to join that group. I joined to learn because, unlike Richard Simpson, I do not know a lot about palliative care. Members will be glad to know that, because I am here to learn—and although I have already learned a lot through the cross-party group—I will refrain from saying too much.
One of the first visits that I made was to Rachel House, to which other members have referred. I recommend any member to undertake a visit there. It is Scotland's only palliative care hospice and a visit there is emotive, humbling and rewarding. Another house is being sought. I phoned today and understand that a shortlist of sites on the west of Scotland has been arrived at. I wish Rachel House every success in that venture. I hope that the Scottish Executive will give it encouragement and any assistance which it asks for. I was struck by the fact that—as I understand it—Rachel House is currently partly funded by all 15 health boards in Scotland. It hopes to receive funding from all 32 local authorities for the second house, when it is established.
It strikes me that there is a need to ensure that we get some joined-up thinking and working—co-ordination is what we are looking for. That was highlighted at today's lunchtime meeting of the cross-party group.
It must be novel for a minister to come to a debate at which we are not asking for more money. However, it is surely not too much to ask for the Executive to develop co-ordination in this area and to take a lead. That would be welcomed by all concerned.
In confining my remarks to that, I again congratulate Michael McMahon on securing this debate.
I too welcome the formation of the cross-party group on palliative care. I acknowledge Michael McMahon's role in that, and in securing today's debate.
As Richard Simpson pointed out, palliative care in Scotland is a success story of partnership between the national health service and the voluntary sector. Michael McMahon also made the important point that the principles and approach of palliative care should inform the care of all patients. The fundamental concern of palliative care is to respond to the totality of each person's needs. It should be provided in the setting which best meets those needs, whether in hospital, at home, in a nursing home or in a specialist palliative care unit.
The motion makes the link between cancer survival and the need for palliative care, and that link with cancer reflects the origins of modern palliative care, as Richard Simpson mentioned. Michael McMahon is right to acknowledge some improvements in the figures for cancer survival. For the majority of cancers, survival has increased substantially over the past 20 to 25 years. That applies particularly to malignant melanoma of the skin, to testicular cancer, to leukaemia and to colorectal cancer. It is also true of breast cancer.
International comparisons are always difficult, because of differences in population coverage, data quality and case mix. For most cancers, however, the prospects for Scottish patients who survive for up to five years after diagnosis are excellent. Driving those improvements further is, and must be, a priority.
As several members have said, cancer survival is only one element in determining the need for palliative care. I know that, for some time, the providers of palliative care have been looking beyond the traditional association between palliative care and cancer.
It is now clear, as several members have mentioned and as the Scottish Executive accepts, that the principles of palliative care have a much wider application. They should be brought into play from the time of diagnosis onwards, not just in the terminal phase of an illness. They can transform the management of other progressive conditions; motor neurone disease and Parkinson's disease are the two that are most mentioned, but HIV/AIDS and our other clinical priorities, coronary heart disease and mental health, can be added.
Palliative care can bring enormous benefits to patients with end-stage heart failure. That is a clear example of a need which all too often goes unmet. That is something that our coronary heart disease task force has picked up on and will mention in its report.
The role of palliative care in relation to mental health has been fully set out in the report, "Positive Partnerships". Patients with severe mental illness who go on to develop a life-threatening illness must have their physical symptoms relieved. They also need psychological and spiritual support, and our ability to work together in the best interests of the patient is always tested in tackling a combination of physical and mental health needs. The palliative care approach gives the best chance of success.
The motion mentions the need to ensure that palliative care is adequately included in strategies for the care of people with cancer and other chronic illnesses. The Scottish cancer group leads and directs Scotland's cancer strategy. It strongly represents the voice of palliative care, and I can assure members that palliative care is an integral part of the development of cancer services.
Key documents are health improvement programmes, trust implementation plans and joint social care plans, which require consideration of the cutting across from the NHS to social work. However, I take on board Fiona McLeod's comments—she has now gone, I presume to Inverness—regarding social work services, and I will consider them further.
Every health board in Scotland has developed a palliative care strategy. To date, 31 hospitals in Scotland have either specialist palliative care teams or palliative care support nurses. However, we are not complacent. The Scottish Executive health department has commissioned the Scottish Partnership Agency for Palliative and Cancer Care to undertake an assessment of how far the health boards' strategies embrace the palliative approach.
Further, in conjunction with the agency, we are encouraging the development of a managed clinical network in palliative care, with specific reference to pain relief. The Scottish Intercollegiate Guidelines Network guideline on cancer pain has recently been published, and the evidence base for the network is in place.
As Michael McMahon said, the knowledge is there; those are the kinds of measures that should help to spread the good practice that every speaker has said that we must achieve. We have also funded the pilot programme of hospices as resource centres and we are analysing the results so that we can roll the programme out across Scotland.
Standards are being developed for palliative care which the Clinical Standards Board for Scotland recognises as the underlying core principles of care for all patients with cancer. Those standards are being fully incorporated into the standards for colorectal, lung, breast and ovarian cancer care.
Much is said by the Scottish Executive about modernisation, and people jump to the conclusion that it must mean hi-tech equipment or new buildings. There is a place for those, but I agree with the message that has come across in the debate, that a modern NHS has to care as well as treat. Modernisation of the NHS is about making its services more caring; as has been said, that is the future of the health service in Scotland.
Palliative care is patient centred. It is very difficult, but it demonstrates that we can put our aspirations for the NHS into practice if we have the imagination and commitment to do so. The widespread support from all parties for the cross-party group on palliative care is a clear and welcome sign of that commitment, which I am sure will continue through the lifetime of this Parliament.
Meeting closed at 17:37.