Hansard

I am pleased to speak to the motion in Sylvia Jackson's name, which I was involved in drafting. Unfortunately, Sylvia is unwell. She is upset at missing the debate because she is totally committed to gaining improvements in the life expectancy and experiences of young people suffering from Duchenne muscular dystrophy.

The issues were first brought to Sylvia Jackson's attention by her constituent Dean Widd on behalf of DMD sufferers in Scotland. On Sylvia's behalf, I put on record her thanks to Dean for his work. I know that, if re-elected, like me and others Sylvia will continue to press the Government on behalf of her constituents.

I first became aware of the issues to do with DMD when I was contacted by Sheila Crilly, gran of a lovely wee four-year-old boy from Coatbridge, Alan James Gilmour—otherwise known as AJ—who was diagnosed with DMD just over a year ago. AJ and his family visited the Scottish Parliament as part of a lobby last June and the family attended a meeting in the evening organised by Sylvia Jackson. The family and friends of AJ are currently fundraising to allow him to swim with dolphins. I wish them all the best.

DMD is a rare condition that is caused by an absence of dystrophin, which is a protein that helps to keep muscle cells intact. The lack of that protein causes a generalised weakness and muscle wasting, first affecting the hips, pelvic area, thighs and shoulders but eventually affecting all voluntary muscles, and possibly the heart and breathing muscles. DMD almost exclusively affects boys and signs can appear as early as three years old. Children who are affected are often late in learning to walk and most lose the ability to walk between the ages of eight and 11. DMD affects about 100 boys a year in the United Kingdom, it can be genetic and there is currently no cure.

Young boys in Scotland who are affected are dying on average 10 years earlier than their counterparts in north England and much earlier than those in some other countries such as Denmark. Scottish parents of children with DMD, including my constituents, were recently very saddened to hear of the death of Graham Jackson, an 18-year-old Duchenne sufferer from Lanarkshire. I pass on our condolences to Graham's family.

Those parents have many questions for the Scottish Executive, some of which were asked in the recent race against time campaign. I will come to them shortly. However, I say to the minister that the most important question is, why are Scottish children dying prematurely? That is a shocking state of affairs. I would be grateful if he would tell us how the Executive intends to increase the life expectancy of children with DMD.

Colleagues will no doubt raise specific issues. Before they do, I will highlight concerns that have come to my attention.

Improving the quality of life of children with DMD is important if we want to improve their life expectancy. We must ensure that their experiences are as good as they can be. Access to physiotherapy is patchy, but good physiotherapy support can play an important role in helping future mobility. Access to neurorespiratory services is a significant factor in adult survival rates for those with DMD. In that context, assisted ventilation in Scotland requires more funding.

The attention that has been given to diagnosing spinal curvature and the surveillance of heart and breathing muscles has improved. I note the work of the Scottish muscle network in that regard. I am sure that the minister will have more to say about its work in his closing remarks. However, AJ's mum, Clare, has told me that Glasgow leads the world in cardiac research, but not for boys whose hearts are affected by DMD. She wanted that point to be made in the debate.

Wheelchair provision is another major issue. Wheelchair provision can substantially improve the quality of people's lives, but it is very patchy. Indeed, the matter has been a news item this week following the outcome of the review of wheelchair services. I would be grateful if the minister would comment on that.

Suitable housing and the provision of appropriate adaptations are extremely contentious issues, but suitable housing and appropriate adaptations are vital for improving quality of life. In Denmark in 2005, only one adult with DMD over the age of 23 did not live in his own home; in Scotland that year, only one adult with DMD lived in his own home. That is unacceptable. Perhaps the minister will comment on the relevant provisions of the Housing (Scotland) Act 2006 and say whether they will change the current means-tested approach that is taken under the housing improvement grant scheme. Elsewhere in the UK, there is a set grant amount up to £30,000, which is not means tested.

Finally, I would appreciate comments on the steps that have been taken to encourage and support research on DMD in Scotland and on the lessons that are being learned from research elsewhere. I lodged written parliamentary questions on those matters earlier in the year, but I did not receive robust responses. I am particularly interested in research funding for exon skipping as a possible treatment for DMD.

The issues that I have mentioned are the main issues that people have raised with me. I am sure that colleagues will raise other issues.

I will finish by quoting from a letter that was sent to me by AJ's other gran, Violet Gilmour, who has said things much better than I can. She said:

"My heart aches for A.J. when I think of the hurdles he will have to face in the future but we will be there for him to help him over the hurdles. He is such a happy and funny child, when A.J.'s around sadness is put aside.

We all hope and pray that things will change in Scotland and more help and grants will be made available to families of boys with DMD to give them a chance of a much better quality of life.

Hopefully this will happen soon and bring Scotland up to the same high level of care they have in Denmark."

I say to the minister that time is running out for young Scottish boys with DMD. If those boys were our own children, we would move heaven and earth to help them. The Government in particular has a responsibility to do all that it can to improve the life expectancy, quality of life and life experiences of those young people. It must make that responsibility a priority.

I welcome the people in the gallery who have come to listen to the debate and look forward to hearing what colleagues have to say. I hope that there will be a positive response from the minister. Again, I apologise on behalf of Sylvia Jackson, who would have liked to be here.