S2M-4228 Muscular Dystrophy

Scottish Parliament

Thursday 8 June 2006

[THE PRESIDING OFFICER opened the meeting at 09:15]

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Muscular Dystrophy

The Deputy Presiding Officer (Murray Tosh): 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.

17:08

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17:18

Stewart Stevenson (Banff and Buchan) (SNP): 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 in obtaining appropriate and timely adaptions to the house 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 adaptions 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.

17:22