Motor Neurone Disease

– in the Scottish Parliament at 5:00 pm on 20 June 2007.

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Photo of Alasdair Morgan Alasdair Morgan Scottish National Party 5:00, 20 June 2007

The final item of business is a members' business debate on motion S3M-73, in the name of Margaret Mitchell, on motor neurone disease. The debate will be concluded without any question being put.

Motion debated,

That the Parliament acknowledges that motor neurone disease (MND) is a serious, progressively disabling and fatal condition, which can affect any adult and for which medical science currently has no known cause or cure; understands that there are currently 64 people in central Scotland and 280 people throughout Scotland with MND and that this figure is rising; congratulates the Scottish Motor Neurone Disease Association for its commitment to improve the lives of sufferers of MND and to help people living with MND; notes that in the financial year 2005-06 the association incurred costs of £63,836 in relation to the services provided by the MND care teams within central Scotland; further notes that there was no financial contribution towards the cost of providing these services from NHS Lanarkshire, NHS Forth Valley or NHS Ayrshire and Arran, the three NHS boards covering the central Scotland area; believes that there is a compelling case for NHS boards to meet some of the costs of providing these care teams which would make a huge difference in terms of the care received by those with MND, and therefore considers that the provision of this funding should be addressed as soon as possible.

Photo of Margaret Mitchell Margaret Mitchell Conservative 5:01, 20 June 2007

In the public gallery, we have with us members of the Scottish Motor Neurone Disease Association, sufferers and their carers, family and friends. I warmly welcome them to the Scottish Parliament.

Monday 18 June marked the beginning of motor neurone disease awareness week, so it is apt that we are debating my motion today and raising awareness of this devastating illness and the problems surrounding the funding of the care of those who have the disease.

Every day, three people in the United Kingdom are diagnosed with motor neurone disease and three die from it. In Scotland, more than 120 people are diagnosed with the disease every year and 120 people die from it. It is a fatal disease for which there is no cure and of which the cause is not known. It is a progressive disorder of the nervous system for which there is no definitive diagnosis. It affects different individuals in different ways, depending on the nerve cells involved, but it is always progressive, resulting in paralysis, loss of speech and impairment of the throat muscles—which means that sufferers are unable to eat or drink. Limbs and the diaphragm cease to function. Life expectancy after diagnosis averages 14 months.

Motor neurone disease has been described as one of nature's cruellest diseases, because while there is progressive degeneration and paralysis of the limbs and diaphragm, which results in respiratory problems, the mind remains intact. On rare occasions, it affects children, but it mostly affects people over 40—although a significant number of people are diagnosed in their 20s.

Motor neurone disease is no respecter of persons. Recently, the chamber was shocked and deeply saddened to learn of the death of Mark Canavan, the son of former Falkirk West MSP Dennis Canavan, at the age of only 41. In 2006, it claimed a number of football personalities, including Jock Wallace, the former Rangers manager, who was 61; Jimmy Johnstone, the former Celtic player and Lisbon lion, who was 61; and Don McVicar, formerly of Partick Thistle and St Johnstone, who was only 44. From the world of broadcasting and entertainment, in 1982, the disease claimed Ian Trethowan, the former director-general of the BBC, and, a year later, the actor, David Niven, who was 73.

The Scottish Motor Neurone Disease Association is the only charity in the country that cares for sufferers. It provides support, education and information to patients, carers—both voluntary and statutory—and families, and offers a multidisciplinary health team service at the time of diagnosis, during progression of the disease and beyond.

The association aims to raise awareness of motor neurone disease, to promote research and to ensure that the right help, care and support are given at the right time, to allow sufferers to live as well as possible for as long as possible. It focuses on ensuring that generic service systems of health and care are able to meet the needs of people who live with MND—in particular, their need for a rapid response to changing requirements. In effect, it ensures that fast-tracked requests for services are responded to.

The motor neurone disease Scotland care team of six people, which comprises three full-time and three part-time health professionals who are employed by the national health service, is stretched to breaking point. It exists only because funding is provided by the association. Last year, health boards contributed a derisory £9,415 to a £300,000 service.

I believe that the service that the care team provides is an example of world best practice. Furthermore, the model of care that it has implemented puts into practice the main principles of the Kerr report, "Building a Health Service Fit for the Future"—integration between health and social services, the delivery of services as locally as possible and the provision of prompt access to specialised services when necessary. The irony is that the care team has been doing that since 1982.

I have three questions for the minister. When such a vital service fits so neatly into current policy, why does it have to rely for funding on the good will of the public through their donations to the association? Why does the association have to bear the responsibility of funding the care team when its members work alongside NHS-funded clinical specialists for other neurological conditions who work in the same offices and do similar jobs? Finally, what can she do to rectify that injustice and to help with research into such a humbling disease?

Photo of Christina McKelvie Christina McKelvie Scottish National Party 5:08, 20 June 2007

I thank Margaret Mitchell for bringing the issue to the Parliament.

Motor neurone disease is a devastating illness. As doctors will say, the prognosis for anyone who is diagnosed with the disease is not good—the expectation is that the patient will be dead within a few years. As a child, I watched my father struggle with the condition. Unlike most sufferers, he lasted for some 12 and a half years—an astonishing result—as the condition went through intermittent stages. There were times when he wanted nothing more than to be allowed to die. It was horrific to grow up with that, but that desire in sufferers is perfectly understandable when we remember that while their bodies fail, their brains remain intact, with the result that their bodies are almost turned into prisons for minds that are still active.

Modern medicine knows of no cause and no cure for the condition and cannot predict where it will strike. Any one of us could develop MND, as current good health is no guarantee of continuing good health.

As the motion states, the number of people in Scotland who live with MND is rising and the provision of support for sufferers is not all that readily available; as it points out, we should praise the work of the Scottish Motor Neurone Disease Association, which I thank for supporting my family. Its commitment to improving the lives of sufferers and to helping people to live their lives as comfortably as possible is admirable and should be supported.

The case for the association receiving some financial help from public funds should be considered. That is only one of many claims on scarce resources that ministers will receive, but I hope that it will be given careful consideration. I hope that the minister will look hard at the possibility of providing funding for the association, directly or indirectly, through asking health boards to ensure such provision. I hope that she will ensure that research into possible causes and cures continues. I hope that she can tell us that our ministers will support the research or that she will ensure that such support will be forthcoming as soon as possible.

Few conditions are more distressing than motor neurone disease, and whatever we can do to alleviate the suffering and distress of patients will be most welcome. I hope that ministers will thoroughly consider in the coming months the full case for support of motor neurone disease sufferers and research into MND. I do not expect the minister to make a commitment today to provide funding and support, but I hope that we will hear a commitment to examine the case for it thoroughly and speedily.

I do not wish to take up too much time with my speech; I think that the facts speak for themselves. I hope, for all of us, that the minister will agree to take the necessary time to consider the issue. I support the thrust of the motion we are debating and I hope that the minister will feel similarly disposed.

Photo of Richard Simpson Richard Simpson Labour 5:10, 20 June 2007

Both previous speakers have described the nature of this disease. The number of people who are affected is not large, which is welcome, but it is nevertheless a problem because it is difficult to devise services, develop research and provide comprehensive support quickly for such a small group of individuals. Health boards can lose the issue under the radar. The fact that the health boards involved support the care team's six co-ordinators only to the extent of £9,000-odd out of £300,000 is perhaps not surprising, but it is, frankly, unacceptable.

In a sense, the current situation with MND mirrors the situation that I found at the beginning of my professional career with the generality of palliative care, which was not handled well in Scotland or, indeed, the United Kingdom in the pre-hospice era. However, extensive palliative care was developed in the 1970s and there was improved awareness and increased support. Scotland led the way in that regard and should do so again.

The hospice movement was in deep financial trouble in Scotland in the 1980s, but Michael Forsyth, the Conservative Secretary of State for Scotland at the time, agreed to 50:50 funding. That meant that every £1 the public raised was matched by £1 from the public purse. Today, we have palliative care in Scotland that is the envy of the UK and Europe. I suggest to the minister that, for this small, select group of MND patients, we need to extend that 50:50 concept—not just for the small number who require hospice care, but for the larger number who require extensive refurbishment of their homes, serious support for their carers and families, and equipment for sometimes short periods of time.

We previously debated in the chamber free personal care, which is one of the best examples of what has been achieved during the past eight years with cross-party agreement in the Parliament. We need to ensure that free personal care is applied without delay to those who suffer from MND. We also need to ensure that the care-and-repair budget, which will be £10 million for the coming year, will be adequate to supply the refurbishment that is needed to support the families of MND sufferers. We need to ensure not only that each carer of a sufferer is given the assessment to which they are entitled by law, but that they are told that they are entitled to that assessment.

Christina McKelvie made an important point: we forget the children of the families who are affected by MND at our peril. We need to support not only the carers, but the families.

We need to go beyond carer assessment, to carer training. The association's resources cannot extend beyond providing advice and help. It cannot go in and give the practical assistance for the caring that every carer of every MND sufferer must supply.

I expect significant developments in research, which will be important for Scotland, in the next week or two. I urge the minister to ensure, when she is in discussion with those who will achieve the funding, that the Government plays an active role and that it is seen to be committed to the sort of partnership that is a tradition in Scotland and which is good for Scotland.

If we discuss this matter again during this parliamentary session, I hope that, by then, every health board will have committed itself to provide adequate funding and support for the care team co-ordinators and to extend proper support for MND sufferers.

Photo of Mary Scanlon Mary Scanlon Conservative 5:15, 20 June 2007

I congratulate Margaret Mitchell on securing this debate during MND awareness week and I acknowledge and thank her for her work on the issue. I thank Dr Simpson for acknowledging Michael Forsyth's input into the hospice movement—it was nice of him to mention that.

On average, 120 new cases of MND are diagnosed in Scotland every year. As Margaret Mitchell said, sufferers are faced with the fact that 48 per cent will die within a year of diagnosis. A smaller percentage of sufferers live for more than five years, but they are exceptions, as Christina McKelvie said. According to information from the web, average life expectancy after diagnosis is just 14 months.

MND is a particularly cruel disease, which progressively and fatally disables muscles, affecting movement, speech and eating. It has no cure and can affect any adult, although most cases involve people over 40. I am hesitating, because members have made some of the points that I was going to make.

There are no drugs that can cure the disease, so treatment involves a package of care, which is provided in Scotland by organisations such as the Scottish Motor Neurone Disease Association. When I was researching the matter before the debate, I was shocked to discover that so much care is provided by a charity—I even checked with Margaret Mitchell that that is true before I stood up to give my speech. We do not expect that to be the case in modern Scotland. I understand that care provided by the association in the Highlands in 2005-06 cost £22,000. The SMNDA relies on the public's support to fund its care, and its request for 50 per cent funding from NHS Highland would cost the board only slightly more than £11,000. It is incredible that patients who are at risk are not receiving proper care and support and are dependent on a charity in this day and age in Scotland.

There have been calls for the extension of free personal care to people under 60. I am not calling for free personal care for all people under 60 who have a disability, but an extension of the policy might be appropriate for some patient groups. I hope that the minister will consider the issue.

However good the care package is, it is no consolation to sufferers, who know that there is no cure for MND. It is heartening that research is continuing. I was encouraged to learn that, during the past 15 years, similar—although not identical—features have been discovered in neurodegenerative diseases such as MND, Parkinson's disease and Alzheimer's disease. I share researchers' hope that a breakthrough in one disease might have a positive impact on our understanding of another.

I support Margaret Mitchell's call for NHS funding for care packages. As Dr Simpson said, MND sufferers are a small patient group. That means that they could easily be forgotten, so it is good that we are debating the issue. Anything that members can do to increase awareness will, I hope, lead to greater understanding of the disease and greater support for sufferers.

Photo of Karen Gillon Karen Gillon Labour 5:19, 20 June 2007

I join others in congratulating Margaret Mitchell on securing this important debate and in welcoming the members of the public to the public gallery, particularly my constituents, who have made the journey from Clydesdale. Several members have spoken in detail about the disease and how it affects people, so I will focus my comments on two issues: research and respite care.

One of my constituents and his family have been living with the disease for 23 years. He is not a typical sufferer. He has maintained his spirit and good humour throughout what must have been a difficult time. In those 23 years, little progress has been made on identifying the cause of the disease or, perhaps more important, on finding a cure for those who suffer from it. As Mary Scanlon and Richard Simpson said, research is continuing. I would be grateful if the minister outlined how she believes further progress can be made and how the Executive or the NHS could offer further support in the future. Although the disease affects a small number of people, the impact on them and their families is huge. Because so many people contract the disease at a young age and have their lives ended so quickly, we should try to make progress with research as quickly as possible.

As I said, many people who suffer from MND are not old. Many have families who provide care for them 24 hours a day, seven days a week. If such families are to maintain a semblance of normal family life, they need to go on holiday and do things as a family. However, respite care is not easy to come by. To ask somebody who is 40 to go into an old folks home for two weeks is not only wrong, but demeaning. In the past eight years, all members have become aware of the need to find adequate and appropriate respite care for under-60s who require such support. They need appropriate support and to have time with their peers, so that their families can be comfortable and secure in the knowledge that their loved ones are being looked after appropriately.

My constituent has been lucky and has had good care in the local NHS hospital. However, the circumstances have changed in recent years. Perhaps the minister can consider, and have further dialogue with NHS boards on, the issue of respite care for people who are under 60 and for whom a placement in a hospital may be more appropriate than a placement in an old folks home. That would be a positive approach. We now have new modern hospitals with individual rooms and support available, which is a more appropriate setting for such folk.

I welcome the debate, although I wish that we did not have to have such debates, because whenever we have them, that means that there are real people out there suffering from real problems and with real illnesses that affect them every day. It is sometimes difficult fully to grasp how big an impact that has on people until one meets individuals. The debate is not about an abstract concept or a disease that we read about in a newspaper—it is about real people with real lives. As parliamentarians, we have a duty to do what we can to provide them with the support and assistance that they need at what is a difficult time in their lives.

Photo of Shona Robison Shona Robison Scottish National Party 5:23, 20 June 2007

I pay tribute to Margaret Mitchell for bringing the debate to the Parliament and to the patients, carers and families, and people from the Scottish Motor Neurone Disease Association who are in the public gallery to listen to the debate.

As members have noted, the debate is well timed, as it coincides with motor neurone awareness week and tomorrow is global motor neurone awareness day. Margaret Mitchell is right to raise awareness of the condition, which is perhaps the most devastating of the neurological conditions in its effects on those with the disease, those closest to them and carers.

The motion praises the Scottish Motor Neurone Disease Association for its commitment to improving the lives of those with the disease. I am glad to have the chance to offer my thanks to the association for its valuable work in supporting people with motor neurone disease and their families, the importance of which was highlighted by Christina McKelvie in her very personal account; in increasing awareness of the condition among health and social care professionals; in promoting research; or in identifying areas in which services could be improved. The Government recognises the work of the association and supports it through the section 16B grant scheme.

We said clearly in our manifesto that we wanted to work in partnership with the voluntary sector to support new ways of delivering services, since by doing so we can make an immeasurable improvement to the quality of life of people living with long-term conditions. The voluntary sector has generally led the way in promoting a person-centred approach to services, and in stimulating innovative ways of delivering services. The development of the voluntary hospices is perhaps the best example of that. The NHS has learned from that through the development of specialist palliative care units in parts of the country that do not have a voluntary hospice. We need to find a way of ensuring that that pattern applies to other aspects of service provision. We want NHS boards and their planning partners to work with organisations such as the Scottish Motor Neurone Disease Association to ensure that the innovations that are introduced by the voluntary sector can become part of mainstream provision. That process frees up the voluntary organisation to continue innovating, rather than devoting a disproportionate amount of time to fundraising to sustain approaches that have already demonstrated their value.

That sort of thinking is at the heart of Margaret Mitchell's motion. I have made some investigations of the services for people with motor neurone disease in the three NHS boards that are mentioned in the motion: Lanarkshire, Forth Valley, and Ayrshire and Arran. In NHS Ayrshire and Arran, everyone who is diagnosed with the disease is seen and given a full multidisciplinary assessment at the Douglas Grant rehabilitation unit at Ayrshire central hospital. They are always given priority and never have to wait for appointments. Services are kept local through outreach arrangements with the Southern general in Glasgow. The board believes that it has one of the most highly developed support services in Scotland for people with motor neurone disease. I give recognition to that this evening.

NHS Lanarkshire is seeking to develop its partnership with the Scottish Motor Neurone Disease Association, based on the range of services that the association provides for Lanarkshire residents. The association's request for 50 per cent funding of those services is therefore under consideration. The board is discussing with the association how it can play into key pieces of strategic work. Those include the board's comprehensive review of neurological services and its revised palliative care strategy. The board will also encourage links between the association and the board's recently appointed nurse consultant for long-term conditions.

NHS Forth Valley has a multidisciplinary motor neurone disease clinic, which is led by a consultant neurologist and supported by a Scottish Motor Neurone Disease Association nurse. The board's managed clinical network for palliative care contributes to that clinic. I am particularly pleased to be able to say that the board has recently agreed to the association's request for a contribution to the funding of the motor neurone disease care teams.

Taking account of Margaret Mitchell's general comments about boards, I intend to write to all boards to draw their attention to the terms of this debate and to encourage their active collaboration with the association. I will refer specifically to Richard Simpson's point about the principle of extending 50:50 hospice funding to the care of people with MND. I shall monitor that situation. We must be sure that people with motor neurone disease get the best possible care, wherever they live.

With that point in mind, I know that the association has been having discussions with NHS boards and a variety of other agencies about the development of a Scotland-wide managed clinical network for motor neurone disease. MCNs give a strong voice to people living with a long-term condition, the voluntary sector and those who provide the services, on the way in which those services should be developed in the future. Designation as a national MCN would bring with it funding contributed by all the NHS boards in Scotland. That funding would cover the time of the lead clinician in championing the network, the appointment of a network manager and the information technology underpinnings that such networks need. I strongly support the development of such a network on the grounds that it would promote equity of access to services throughout Scotland, improve integration of care across multiprofessional teams and develop uniformity of standards of care.

The creation of such a network fits well with the work that NHS Quality Improvement Scotland currently has in hand to develop clinical standards for the provision of services for people who are affected by any neurological condition, which would include motor neurone disease. The standards need to reflect the aspects of services that matter most to the service users. In this case, that voice will be provided by the Scottish neurological alliance, of which the Scottish Motor Neurone Disease Association is a prominent member.

Equipment and adaptations have an essential role to play. As well as making real and practical improvements to quality of life, the right equipment can support people to live independently in their own homes and help to reduce the need for home care services. With motor neurone disease, the challenge is to ensure that services respond quickly enough to people's needs. By bringing together responsibility for health and housing, we can ensure that those issues are tackled effectively.

I take on board Richard Simpson's comments about support for carers. We recognise that need and will consider additional support to carers as part of the comprehensive spending review.

The motion challenges us all to do the best that we possibly can for people with motor neurone disease. The Scottish Government is committed to the principle that one of the key drivers of service improvement should be the experience of people who live with long-term conditions. We must ensure that the services that treat people treat them as people, not as bundles of symptoms. That is hugely important. We also need to ensure that services are delivered in communities to address their needs.

People with conditions such as motor neurone disease deserve the best quality of life possible. I hope that I have given members assurance that we intend to build on the good work that has been done already and ensure that we develop equity of access throughout Scotland.

Meeting closed at 17:31.