S2M-5521 Duchenne Muscular Dystrophy

Scottish Parliament

Thursday 22 March 2007

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

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Duchenne Muscular Dystrophy

The Deputy Presiding Officer (Trish Godman): The final item of business is a members' business debate on motion S2M-5521, in the name of Sylvia Jackson, on Duchenne muscular dystrophy. The debate will be concluded without any question being put.

Motion debated,

That the Parliament expresses concern that people who suffer from Duchenne Muscular Dystrophy (DMD), a severe and progressive genetic muscle wasting disease predominantly affecting boys and for which there is currently no cure, are dying in Scotland on average 10 years earlier then their counterparts in England; believes that an improvement in the life expectancy and experiences of these young people must be a priority for the Scottish Executive; considers that, in addition to enhanced medical research, better support services, equipment and adapted housing can make a massive difference to the quality of life of people with DMD and can contribute to extending their life expectancy; welcomes the development in 2003 of the Scottish Muscle Network, based at Yorkhill, as a national managed clinical network benefiting patients in Stirling and across Scotland, but believes that more must be done to improve both life quality and life expectancy for people with DMD in Scotland.

17:12

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17:23

Stewart Stevenson (Banff and Buchan) (SNP): Yesterday, we legislated with a glad heart to help sufferers from mesothelioma. In this important debate, we address the needs of a not dissimilarly sized group of sufferers of Duchenne muscular dystrophy. The difference, of course, is that we are addressing a condition that affects the young, whereas yesterday we discussed a condition that generally becomes apparent later in life. I join David McLetchie and others in thanking Sylvia Jackson for bringing the motion to the chamber for debate, and I thank Elaine Smith for stepping in with such good grace and effectiveness.

What quality of life does a young boy who suffers from DMD have and what should it be? As with everyone else, young DMD sufferers should have the widest possible experience in life. There should be humour, excitement and participation with peers in activities that are appropriate for young boys. At that level, having a short lifespan should not be a gloomy matter that we should worry about; the need is to cram into that shorter lifespan the experience that the rest of us can spread more thinly. Clive James, the Australian humorist, said:

"Do not take life too seriously. You will never get out of it alive."

None of us is going to get out of life alive, anyway.

We need to have a network of support and activities that allows youngsters with a seriously restricted lifespan to get as much out of life as those of us who are fortunate to live longer. Their expectations of quality of life should be as high as ours—that is only reasonable.

The boys—from the reading that I have done, there are few girls—who suffer from DMD are not yet getting the quality of life that is available, given that their life expectancy is 10 years less than their counterparts south of the border. I was particularly disturbed by the fact that only one in 25 sufferers is able to stay at home. Next week, I will join the Marie Curie bus as part of a campaign to ensure that people can spend all their life at home right to the very end. It is a cruel deprivation to deny kids with DMD and their families that opportunity. I hope that the minister will indicate how that issue might be addressed.

Clearly, not enough research is being done. Research on DMD is not the kind of research that is likely to be undertaken by commercial companies because, frankly, there are not enough sufferers to guarantee the commercial returns that might be available from work on more widespread diseases, therefore the state, as the proxy for wider society, has a particular role in funding such research. Of course, genetics research now receives much more funding than was previously the case, and such work can be spread across the world thanks to good communications. I hope that Scotland can play its part, as it has done so often in the past, as a leader in this important area of scientific research.

As well as all that high-flown stuff, we also need to work on the practical stuff, such as our ability to provide wheelchairs to support sufferers when their mobility becomes seriously restricted. For such a rapidly progressing condition, we need to ensure that wheelchairs that are specific to the child's condition at a particular point are delivered quickly enough to ensure that they are still appropriate. The wheelchair review highlighted the disturbing point that wheelchairs often seem to be delivered too late to be useful to people whose condition has progressed.

I conclude by making an obvious point that has not been made so far. A number of organisations support people who suffer from DMD and support their families. We need to ensure that we support the families, because having a child whose life expectancy is restricted and whose condition is severe may have a significant effect on parents and friends. I hope that, like other members who are supporting DMD sufferers in this short debate, the minister will offer some words of encouragement in whatever policy areas he can.

17:28