Muscular Dystrophy
The final item of business is a members' business debate on motion S2M-4228, in the name of Cathie Craigie, on the muscular dystrophy my life campaign. The debate will be concluded without any question being put.
Motion debated,
That the Parliament notes that there are 3,000 people in Scotland with inherited neuromuscular disorders and muscular dystrophy; is concerned that in Cumbernauld & Kilsyth, whilst some constituents tell of good provision of electric wheelchairs and praise the staff delivering social services care, some have never received a full needs assessment of their home environment and can only experience care services delivered via an inflexible system weighted towards older people that does not accommodate the lifestyle that other young people are able to enjoy; notes that this is an example of the variation in standards and availability of care, service and equipment provision across Scotland; supports the work of the Muscular Dystrophy Campaign in pioneering the search for treatments and cures for over 40 years, whilst also providing practical, professional and emotional support for people affected by neuromuscular conditions; in particular, supports the Muscular Dystrophy "My Life" campaign and its work in Scotland to encourage a co-ordinated approach by local authorities and NHS boards when assessing individuals' needs and requirements, and considers the findings of the "My Life" expert group to be a model for future delivery of services to people affected by neuromuscular conditions.
I thank members who took the time to consider the motion and offer their support. I also thank representatives of the Muscular Dystrophy Campaign, who have travelled from far and wide to be in the gallery, and the MDC's chief executive, who travelled from London to be here.
The Muscular Dystrophy Campaign is a charity that provides people who have neuromuscular conditions and their families with information and advice about how their lives can be made easier. The organisation provides help and support to members and funds, with contributions from the national health service, care advisers who are based in clinics throughout the United Kingdom and are always on hand to give advice and support to people who are affected by the condition.
All members will have constituents who suffer from some form of muscular dystrophy. I know of 12 people in my constituency who are supported directly by the MDC. I am told that, on the whole, they are pretty happy with the services that they receive from North Lanarkshire Council, NHS Lanarkshire and NHS Greater Glasgow and Clyde. To use one person's term, the services are satisfactory. However, my constituents, as well as professionals and carers who work in the field, have raised concerns that the services that are provided are not consistent throughout the west of Scotland or throughout the country. Service provision is patchy and unpredictable. Serious concerns exist about the standards of care that people in different age brackets and with different degrees of muscular dystrophy receive.
I have heard that people can be misdiagnosed and live with the condition for a long time without being able to rely on the help and support of expert professionals. Serious concerns have been raised about the provision of wheelchairs that are properly and suitably fitted to meet the needs of users. I know of cases in which people have received wheelchairs that do not meet their needs—for example, they might not have the required seating positions. In some cases, that can cause damage and make the condition more difficult to live with. Some people have to make do with unsuitable chairs that aggravate their condition rather than support them. Often, the correct chair is supplied only after charitable appeal or by a kind benefactor.
Does Cathie Craigie agree that it is anomalous that the state guarantees that someone who suffers from muscular dystrophy will be assessed by an occupational therapist for the most suitable type of wheelchair for their needs, but does not guarantee the provision of that type of wheelchair?
There are anomalies. I will come to that, as Dennis Canavan will find out if he stays to listen to my speech. I do not disagree with his point.
As Dennis Canavan said, people are assessed for wheelchairs. I imagine that a young person going for such an assessment will hope that the wheelchair will make their life better and will allow them to access places that they have never been to before. Their hopes will be built up but, unfortunately, the chair that they get may not be the proper design or may be a standard or basic chair that does not meet their needs. In the past few weeks, a report by Barnardo's Scotland and Whizz-Kidz has highlighted the issue and confirmed that the NHS offers only the most basic wheelchairs to the majority of those who need one. Of the children surveyed, 60 per cent were using unsuitable wheelchairs and many had to wait months or years to receive them. I have personal knowledge of the matter, as I have a young nephew who has cerebral palsy. I know about the difficulties that he and his family have had in trying to ensure that he has a wheelchair that allows him to be all that he can be, to go where he wants and to do what he wants with a degree of independence. Young people with muscular dystrophy feel the same way.
A constituent of mine, Mr McCafferty—I do not think that he will mind my mentioning his name—has two sons with a form of muscular dystrophy. He is complimentary about the services that his family has received from social services and the NHS, but he raises concerns about his sons' welfare. He has said that they have not received a full assessment of their needs in their personal environments. Too often, local social work departments and professionals in the NHS, for example, do not seem to speak to one another or exchange information that might make their jobs easier, and services are provided to meet a general need rather than the individual needs of the young person—indeed, provision is usually based on the needs of older people, which is very restrictive for young people.
Members might have experience of 18-year-olds or have family members who are 18. It is not unreasonable for an 18-year-old to want to stay up late in the evening to watch a film or to want to go to a friend's house, a pub or whatever, but there is no flexibility for people who live with muscular dystrophy and therefore rely on somebody to assist them to get to bed at night. Such people cannot stay out late—they must be at home so that the carer or care staff can get them to bed. That is wrong because, as a result, those young people cannot play a full part in the community in which they live. The same applies at the other end of the day. We all know what trying to get teenagers out of bed is like. The time that the young people we are discussing get out of bed is dictated by when the carer turns up. We must consider such matters and recognise that care services and provision should be not only for the elderly, but also for young people. We should recognise that those young people want to be part of society too and that they should have packages that are designed to meet their needs rather than the convenience of the care provider.
How long do I have left, Presiding Officer?
You are over your time, but I will give you another minute if you want to draw things together.
Okay. I am sorry for going over my time.
The message that I want to get across is that we must pull together the services that work, encourage different departments and organisations to speak to one another and ensure that services for all people with muscular dystrophy—including young people—are joined up. The length of time that people have to wait for diagnosis must be reduced. General practitioners and community health centres must receive information and advice on how to look out for people who might have muscular dystrophy so that there can be an early diagnosis and so that those people can have early access to services. Such access will help them to plan in order that they can lead fulfilling lives, be included in society as a whole and can access, when and where they want to, the things that people without disabilities can access.
I congratulate the member on securing the debate. More to the point, I congratulate the Muscular Dystrophy Campaign—as I am sure other members will—on articulating the needs of people with muscular dystrophy, as exemplified in the my life campaign. That articulation makes muscular dystrophy accessible and understandable to people who have perhaps only remotely been touched by the condition—perhaps I should more properly refer to a range of conditions.
We have heard a fair bit about mobility. In my constituency work, the first thank you letter that I received after I was elected as a member of the Scottish Parliament was from a person for whom I had expedited the getting of an appropriate wheelchair. It is clear that there have been difficulties with the provision of wheelchairs for people with muscular dystrophy, as there have been for people with a range of other conditions. The wheelchair in question was for an old person. Cathie Craigie spoke movingly and relevantly about the real difficulties that young people experience—there is the disconnection from their peer group, their inability to participate and, of course, things no longer fitting when they turn up following delays. Mobility is a key strand of the campaign.
Many of us will have met in our constituencies people who have difficulties obtaining appropriate and timely adaptations to the houses in which they live. The Muscular Dystrophy Campaign has provided numbers that suggest that Scottish councils keep applicants waiting for 93 days if they live in council accommodation and for 226 days if they live in private accommodation. I am sure that that is not deliberate discrimination—I do not wish to suggest that it is—but the figures suggest that we need better policies to ensure that we deal with people's needs equitably.
In my experience, the waiting times for adaptations that cause the most distress are those relating to washing and toilet. Of course, you cannae wait for either of those. That is not to say that it is going to be much fun for a person not to be able to go out of their own front door because a ramp has not been put in; and it is not to say that it is going to be much fun for a person to be denied access to their own back garden—especially on a day like today when the sun is out—because a ramp has not been put in. It is just that washing and toilet are absolutely central to life. Washing and toilet are the third strand of independence for people who suffer from this condition.
I have had experience of the condition in my close family; I have watched the progressive degeneration of a person who was older but who would reasonably—without the condition—have expected to live for another 20 or 30 years. It is distressing to see someone in the fullness of their life struck down by a condition and then slowly, with full awareness, deteriorate into someone who has to be cared for all the time. A progressive illness is a cruel illness, whatever it is. Muscular dystrophy is one of them.
I will end by returning to a theme that I have raised a couple of times before. Scotland has a good understanding of its genetic mix. Of all the countries in the world, we are perhaps best placed to do research that might help muscular dystrophy sufferers across the world as well as here at home. It may be that we can do something.
I, too, congratulate Cathie Craigie on bringing this motion to the Parliament. It highlights the difficulties faced by a small but nonetheless important minority of people in Scotland. In an age in which inclusiveness is the norm, and in which it is the intention of the Scottish Parliament to treat all sections of society equally, it is right that we should know about the inequalities that still exist. We should put pressure on the Executive to deal with those inequalities.
As members of this Parliament, we are lobbied regularly by minority groups with diverse physical and chronic health problems. Today we are hearing about muscular dystrophy; yesterday it was mental illness and deafblindness; and previously we have heard about multiple sclerosis, cerebral palsy, and autism, to name but a few. The common thread linking all those conditions is the variable provision that patients experience when seeking the help that they need to lead as normal a life as possible within their physical limitations.
The problems faced by many of the groups are similar; the solutions often do not cost a lot of money, but they make a huge difference to the quality of life of those affected and their families and carers.
I received an e-mail the other day from a constituent in Aberdeen. He is a senior academic who suffers from a mild form of muscular dystrophy, and he said:
"I have found that quite simple and basic changes have allowed me to continue a full and productive life. There is no doubt in my mind that elimination of the current variation in services and provision of specialist support, such as optimal wheelchair allocation, would make a huge difference to the quality of life of an important population group within Scotland."
Wheelchair provision is probably one of the commonest concerns among the disability groups we hear from. Although there are many positive aspects to the wheelchair service, there are undoubtedly challenges too. A recent review of the service—at the end of 2005—found general agreement among users about the nature of those challenges. Waiting times for assessment are often too long; provision of equipment and repairs is delayed because of staffing problems; there is insufficient funding; and there is a failure to integrate facilities. All those problems are causing concern.
Some centres have very reasonable waiting times but others do not—especially for particularly dependent people who need specialised power chairs with special seating. I have seen quoted and know of a case in Aberdeenshire in which a child was assessed and measured for a wheelchair but, by the time it had arrived, he had outgrown it. That is not good enough. Such delays are not only a major blow for the service user, but wasteful of the valuable time of experienced staff, technical expertise and highly specialised equipment.
Patients feel that they are assessed according to what equipment is available rather than on the basis of what their requirements are, that there is limited choice of equipment and that when it is provided, it is generally of basic quality. The provision of follow-up services such as maintenance is often lacking—there are no routine follow-up, assessment or maintenance programmes. The location of service centres can result in people whose mobility is severely restricted repeatedly having to make long journeys, which they find extremely difficult. Moreover, there is no out-of-hours cover for repairs.
The time has come to bring together representatives from all the groups that seek our help to get them the aids and adaptations that they need to allow them to have the best quality of life that they can achieve. We must build up a detailed inventory of their common needs and try to co-ordinate the assessment of those needs and the provision and maintenance of the required equipment.
At a time when unprecedented sums of money are being poured into the health service, it is not acceptable that minority groups of citizens such as those with muscular dystrophy must lobby Parliament constantly simply to get the national health service provision that they need and to which they are entitled. In NHS budgetary terms, we are not talking big money. Co-ordination, integration and some joined-up thinking could make an enormous difference to the lives of many people in Scotland who are living with disability.
I am more than happy to support Cathie Craigie's motion and the my life campaign, but I would like to extend my support to all the disability groups who seek our help.
I, too, congratulate Cathie Craigie on securing the debate, and express my support for the Muscular Dystrophy Campaign and the my life campaign that it runs, which focuses on home, mobility and independence.
I will talk primarily about mobility and independence because—as I am sure other members do—I have a particular case in mind. Some people will know that I used to be a community paediatrician before I was elected. I first saw the boy of whom I am thinking, who is now a young man, when he was in nursery school, before he was diagnosed. By the time I left my job to become an MSP, he was about to leave school. We often use individual cases to illustrate how services have not worked, but I will not do that, because the services that were provided worked for the boy about whom I am talking. I will instead use his case to show what services are necessary and to show how labour-intensive, time-intensive and resource-intensive handling of the condition can be.
Duchenne muscular dystrophy is the condition that many people think of when they think of muscular dystrophy. It occurs in boys and is a relentlessly progressive condition. I first saw the young lad in question when he was about four years old. Until then, he had been an apparently healthy young boy, but he was starting to show signs of deterioration in his motor skills. To cut a long story short, he was diagnosed as having Duchenne muscular dystrophy. It is easy to imagine the devastating effect that that had on a family who thought that they had a perfectly healthy young boy. They were faced with having to make significant adaptations, but they coped amazingly well. I admired, in particular, how they managed to preserve the boy's independence—as I have said, independence is the crux of the my life campaign. Once he was no longer able to walk, his independence depended on the provision of an appropriate wheelchair. On the whole, his independence was preserved, although sometimes there were delays or a lack of occupational therapy or physiotherapy input.
His school environment needed extensive adaptation. While he was still able to walk, handrails had to be put in, then ramps had to be installed and toilets adapted. An auxiliary had to do exercises with him under the guidance of a physiotherapist. A great deal of intensive input was necessary. When he transferred to secondary school, a lift had to be installed. All through that time, he remained part of his peer group. He lived about a mile and a half from the school, but although he was offered transport by the local authority, as any child with such a condition would be, he did not always take it up. If it was not raining, he would go with his friends in his electric wheelchair. If I had been his parent, my heart would have been in my mouth, but that was the right thing to do because it allowed him to remain independent and to be one of the crowd until he left school.
Cathie Craigie's point about the need to put services together is crucial. The child about whom I am talking depended on the provision of a huge amount of services, without which his quality of life would not have been the same. He would not have been part of his peer group, and if the education authority had not agreed to install a lift in his local secondary school, he might not have been able to go there. Another school about 4 miles away had a lift. Until then, it had been the policy of the education authority to send children who had physical disabilities and who required wheelchairs to that school. However, it was agreed that the boy should go to the same school as his peer group, so the necessary adaptations were made. I take my hat off to the education authority for making the adaptations, and to the boy's parents for pushing for them—they were clear about what they wanted for their child.
There is recognition that a person who has a devastating condition that is absolutely shattering for their family can have a childhood that is as similar as possible to the childhoods of people in their peer group. They can be part of the group and can continue to participate fully in the life of their school and community. However, there are no short cuts to that. Time, resources, labour and supports are needed. It cannot be done on the cheap and without putting in the necessary supports.
I congratulate the my life campaign and all those who are coping with the condition. I also congratulate the family to whom I referred—I will not name them, because I have not asked for their permission to do that, although if they ever read my speech they will know that I am talking about them—for providing their son with the fulfilling childhood and school days that should be possible for all disabled youngsters.
I add my congratulations to those that have already been conveyed to Cathie Craigie for securing this evening's debate, and to the Muscular Dystrophy Campaign for the well co-ordinated way in which it has highlighted the practical problems that are experienced by people who have muscular dystrophy, and their carers.
I doubt that there is an MSP who has not discovered in their case load an appeal for help from someone with MD in obtaining necessary aids and adaptations. I first encountered such a situation more than four years ago, when I was contacted by a family whose twin sons required an extension to be built on to their home to provide the space that was required for wheelchairs and other equipment that the boys would need. The fact that the extension was not built until only a few months ago is nothing short of a scandal. I hope that by highlighting such problems in today's debate we may avoid similar situations in the future. To put it bluntly, no one should have to endure the prevarication and red tape that my constituents endured. It was totally unnecessary and completely unacceptable, but I regret that it appears to be all too frequent.
Members have highlighted many aspects of the problems that underline the need for the my life campaign. In doing so, they have made the picture very clear. In my brief speech, I will urge the minister to focus on ensuring that positive work that is being done in research into MD can be progressed.
Although there is no cure for muscular dystrophy, there are ways of managing the condition that can add greatly to a sufferer's quality of life. Treatments are additive, so they should be used together to look after all areas of a person's life. Recently I was in correspondence with Cecilia Keaveney TD, the member for Donegal in the Irish Dáil, who was seeking interparliamentary support for increased funding for neuromuscular disorders, especially MD. She recently attended a presentation by Professor Kate Bushby on advances in research into MD and heard the positive message that, given the right amount of resources and the required degree of political impetus, the idea that nothing can be done for people with muscular dystrophy could eventually be consigned to history.
There has been testing on animals of treatments such as—I must just stun this rather than kill it—antisense oligonucleotides. Apparently such testing has been very successful, even if my attempt to pronounce the term was not. We now need to move on to clinical trials, to ensure that potential treatments will work in people, as they have in animal models. The treatments that are being tested are theoretically attractive, can be administered and would be available in the long term, as companies already make them for other conditions. They are ready for clinical trials and have been registered.
My request to the minister today is not just to help to end the delays in providing aids and adaptations, but to work with our colleagues in other Parliaments where support already exists for research that shows positive signs but needs the political will to advance it. In short, I urge the minister to give people with MD the wheels that they are seeking and not just to reinvent the wheels that already exist, in order to take issues forward on their behalf. This is a very positive campaign and much positive work is on-going.
I accept that there are practical problems that must be overcome—the my life campaign highlights them and they must be addressed. In securing the debate, Cathie Craigie has done Parliament a great service in that regard. However, we could do a greater service to those with MD if we could take forward not only the practical issues that have been raised but the research that will give people far greater hope for the future.
I note that no fewer than 41 MSPs have signed the motion, which shows that there is wide, cross-party support for the ideas that it expresses. I congratulate Cathie Craigie on securing this opportunity to debate an issue that has a devastating impact on a large number of people in Scotland.
I am informed that the Muscular Dystrophy Campaign is in touch with around 17 people in my constituency. In general, however, it is in touch with only one third of those who suffer from MD. That, perhaps, gives us cause to worry that a large number of people are not receiving the diagnosis and treatment that they require.
In preparing for the debate, I discussed with a constituent the issues that he thinks should be emphasised with regard to rural areas. One aspect that he raised was the need for joined-up thinking on the part of the various authorities that are involved in providing assessments and treatment, such as the health service and the social work department. For example, if people from the Highlands need to see a specialist who is based in Glasgow or Edinburgh, would it not make sense for that specialist to have an arrangement to see 10 or 15 people in Inverness on one occasion rather than requiring people to make multiple trips from remote Highland locations to places such as Glasgow and Edinburgh?
Michael McMahon mentioned the fact that some premises need to be extended to deal with those who have muscular dystrophy. Often, people with other forms of disability need their houses to be extended. A girl in my constituency suffered an accident and is now a paraplegic. I have learned that, in Scotland, there is no disability fund and that the available finance for an extension has a maximum ceiling of £20,000 as opposed to—I believe—£30,000 in England, Wales and Northern Ireland. Perhaps the minister could consider that issue in particular.
The Muscular Dystrophy Campaign has asked us for change in respect of promoting the importance of having the correct wheelchair—the right chair for the right person—swiftly delivered. It is absolutely right to focus on that. The Inverness access committee has highlighted that issue with the health board and the health board has done a lot of good work. The shopmobility campaign is successful in Inverness and many volunteers give a great deal of time and effort, as they do across Scotland.
However, there is still a lingering feeling that, perhaps, dealing with problems relating to access and wheelchairs is not a core issue for the national health service. I would like to see that mindset changed so that it is seen as a core issue. I, too, have been asked by many constituents to intervene.
We all know that government is about making choices and distinguishing between what is essential and what is merely important. If there is an option to put some more resources—perhaps £1 million or £2 million—into providing the right wheelchairs at the right time and cutting some of the delays that members have referred to, would it not be better to put money into that and take some money off some of the public health advertising campaigns? We could easily cut that budget line by a few million and nobody would notice a blind bit of difference, since there seems to be no evidence that television campaigns that exhort us to behave better in our lives are efficacious. I hope that the minister will consider diverting some of the resources from public health advertising and will, instead, provide wheelchairs that people need.
I commend the many people who have come to listen to the debate. That shows that Cathie Craigie was right to raise the issue. I hope that the cross-party support for the motion will send a clear message to the minister of the priority that the people of Scotland place on this issue.
I, too, congratulate Cathie Craigie on bringing her motion to the Parliament for debate. I echo what has just been said about the clear consensus on the importance of the issues that have been highlighted and the importance of responding to them.
Everyone who spoke in the debate recognised that it is important to ensure that people who have inherited muscular disorders have the best possible quality of life in living with them. I acknowledge the central role that carers play in achieving that aim. I also acknowledge the Muscular Dystrophy Campaign's work to raise awareness of people's needs, particularly through its current my life campaign.
Neuromuscular disorders are inherited as single gene disorders and the genetic defects that are responsible for the more common conditions have been identified. Through the Scottish molecular genetics consortium and local genetic counselling services, families have access to the molecular genetic testing that they need. We have been conducting a review of genetic services and looking at improving access to highly specialised expertise. The review is looking at supplementing the support that is provided by voluntary organisations, especially by providing user-friendly information and resources such as family care advisers to support those who live with the conditions.
A number of members, including Michael McMahon and Stewart Stevenson, talked about the opportunities for research. We recognise those, and the chief scientific officer in my department would certainly be willing to consider any soundly based request for funding for research into muscular dystrophy. As with any research, proposals would be subject to peer and committee review before they proceeded, but I encourage anyone who has such soundly based proposals to submit them for consideration in the usual way.
Members will be aware that, a few months ago, we set out in "Delivering for Health" our approach to long-term conditions. We stated that people with long-term conditions should be recognised as equal partners in managing their condition and that the services they need should be provided as locally as possible and should respond to the totality of their needs. That means, among other things, that people with complex and frequently changing needs should have a key person who actively manages and co-ordinates all their needs. People with muscular dystrophy will be among those who will benefit from that approach.
We already have in place the Scottish muscle network, which was set up some seven years ago and recognised as a national managed clinical network in April 2004. On that basis, it receives NHS funding. The network draws together professionals from health, social work and education and seeks to integrate services. Such integration is a key point that has been mentioned by several members this evening. The network also ensures that there is a consistent quality of service throughout Scotland.
Cathie Craigie and others mentioned the importance of assessment. It is worth emphasising that anyone who has needs that arise from a neuromuscular disorder—or anyone acting on their behalf—can seek an holistic assessment of their needs that will include consideration of the suitability of their home environment. The assessment will be done by a health or local authority professional and recommendations will be provided to housing officers if adjustments to the person's living environment are required. That assessment is clearly an important stage in dealing with neuromuscular conditions.
As has been said, we need co-ordination between local authorities and NHS boards. The importance of joining up services so that they are delivered coherently is the message of "Delivering for Health", but it is also reflected in our review of social work services and in the creation of community health and care partnerships.
Anyone who needs a community care service has the right to have their needs assessed. I am pleased that Cathie Craigie's local authority area, North Lanarkshire, is in some respects leading the way in those assessments, particularly with the sharing of information between agencies and with lead assessors having direct access to other agencies' services. That joint futures approach is one that we want to develop further in the future.
The my life campaign asked an expert group to work on models for the future delivery of service. I do not know whether the minister is aware of that group's report and suggestions. Will he agree to meet representatives of that group to discuss the work that it has undertaken and to consider ways of encouraging local authorities that are not delivering quality services to embrace that group's suggestions? I invite the minister to the reception after the debate to speak to representatives there.
I am happy to go and say hello to Cathie Craigie's constituents, as she suggests, and to ensure that the views that have been derived from that work are fed into the Health Department's consideration of how to progress.
The single biggest concern about equipment that has been raised tonight involves wheelchairs. Members will be interested to know that the report that we commissioned some time ago on the NHS wheelchair service will become public in the next 24 hours, according to the existing timetable. Like many members who have spoken, I recognise how needs have changed and that more sophisticated wheelchairs can assist people in a way that they could not do previously. On the basis of the changes in the environment in which decisions are taken, we commissioned NHS Quality Improvement Scotland to undertake an independent review of the service and to make recommendations on how the service might be improved. The report is independent and I cannot prejudge its detail, but I assure members that I will consider carefully the recommendations that NHS QIS makes on the basis of its assessment of the service.
We have established a guidance review group to provide a pathway through the guidance for people who use equipment and adaptations and an advisory group to progress the recommendations from "Equipped for Inclusion: Report of the Strategy Forum: Equipment and Adaptations". The advisory group's purpose is to break down unnecessary barriers to service users.
We have provided funding to reduce waiting lists and to support improvements in the delivery of equipment and adaptations. In the latest financial year, we have provided additional resources to support improvements. Together, local authorities and NHS partnerships are using that funding in a variety of ways in relation to wheelchairs, access to housing and joint delivery initiatives.
Will the minister respond to the issue that I raised? The amount of grant that is available for extensions to houses for people with a disability of whatever type that means that they are immobile and require an extension appears to be substantially less in Scotland than it is in England. Will the minister report to us on why that is and let us know whether he can eliminate that discrepancy?
I am not familiar with that point, but I am happy to examine the evidence for Mr Ewing's statement. If he is prepared to write to me about that, I will respond as fully as I can.
I emphasise that the Government recognises the points that have been made about the need to join up local authority and NHS services in support of people with neuromuscular disorders, to support the work that is being done on the identification of genetic causes and to deliver services as closely to people's homes as possible and in a way that meets their needs. We are particularly conscious of younger people's needs, which members will find are covered in the wheelchair service review report when they see it.
Meeting closed at 17:49.