Hansard

I thank Elaine Smith, Sylvia Jackson and all the members who are present for their work in bringing the debate to the Parliament and raising the profile of Duchenne muscular dystrophy. Like many colleagues, notably David McLetchie, I thought until relatively recently that I knew at least a little about muscular dystrophy, although I remained entirely ignorant about Duchenne muscular dystrophy, but when the disease hit the sister of one of my best friends, its impact registered on me.

First, I heard that one of Sarah's sons had been diagnosed as having Duchenne muscular dystrophy and that it is a degenerative and ultimately fatal condition. Then I heard that her other son had also been diagnosed as having the condition. I find it difficult to comprehend how any family copes with such a diagnosis, but people are remarkably resilient. My reaction was shock, possibly horror. It was also fear. As a parent, I was frightened by the thought of what such a diagnosis would mean to my children or to me. I would describe my reaction to the news as quite negative. I will come back to that later.

It was the next challenge to my ignorance that, for me, moved the subject from personal tragedy to something on which political action is called for. Parent Project UK, or PPUK, gave a presentation here in the Scottish Parliament last summer. We hard from parents, their children, specialists, voluntary organisations and charities. They impressed on us not just the impact of the disease but the fact that, if people are unlucky enough to be diagnosed with Duchenne, they are better off if they live in Denmark, Wales or England. In fact, it appears that they are better off in many places other than Scotland.

I apologise if I repeat some of the points Elaine Smith made, but I think that they are worth emphasising. In Denmark, the average age of death from DMD is 37. In Norway, it is only a little less than that. In the north-east of England, most young men with the disease survive to the age of 29, but in 1999 only 17 out of 236 DMD patients in Scotland had survived into adulthood. Although the figure has improved recently—there are now 37 adults in Scotland with the condition—there are 75 such adults in Denmark.

From what we were told at the PPUK presentation, it appears that there is nothing on offer in Denmark that is not available in this country, but patients in Denmark with DMD have far greater access to those treatments and to a level of care that is denied patients in Scotland. From an early age, patients in Denmark have access to therapeutics and to electric wheelchairs that lift them upright, and all adults with the disease have access to a car driven by their carers. In Scotland, only one of the 37 adults with DMD lives independently and it is interesting that he uses direct payments. In Denmark, 60 of the 75 adults with DMD live on their own in specially designed accommodation.

Patients with DMD need respiratory help such as that provided by ventilators. Although that can be expensive, it is available. Just as important is the fact that, in Denmark, the state addresses the vocational, social and employment needs of the young men concerned, which gives them a remarkable quality of life compared with that of sufferers here.

I mentioned that my initial reaction to the news that my friend's sister's child had DMD was quite negative. Unfortunately, it appears that such a response is all too typical. According to one of the parents who attended the lobby event, the attitude in this country seems to be along the lines of, "Your son has a terminal condition, so best make the most of your time with him while you have the chance." It is not about being encouraged to look forward to a life that is still full of potential. We must learn from the Danes and celebrate the lives of such people to the full.

At the presentation, we heard the familiar story of parents battling for resources for their children. I am sure that we have all come across families who are already struggling with very difficult circumstances and feel that they have to take on the authorities that, in theory, are there to support and help them. One of the key differences between what happens in this country and elsewhere is in housing provision. We heard that, in Wales, £30,000 is made available to patients for house adaptations, whereas here the figures do not even come close to that amount. Patients are often the victims of a geographical lottery, depending on the local authority area in which they live. I hope that the minister can reassure me that when they are implemented, the reforms that were introduced by the Housing (Scotland) Act 2006 will reflect the needs of patients with DMD.

The recent wheelchair review is potentially highly encouraging, but patients are worried about its funding and implementation. Improvements could be made in cardiac care. If we were able to support a clinical trial for patients with DMD in Scotland, that would offer hope. NHS Quality Improvement Scotland should become involved in driving up standards of care, as I believe the Scottish muscle network has suggested.

Parents want to see movement on two fronts. As one grandparent put it, they want help with the practicalities dictated by their children's changing needs, while they continue to dare to hope that one of the many avenues of research worldwide will lead to a cure or, at least, to a means of making the symptoms less severe and prolonging life. I understand that it is difficult for ministers to make special cases and that policies must apply to all patients even-handedly, but I hope that the minister acknowledges the frustration that exists among families. We are not talking about a large number of sufferers, and a relatively small investment or improvement in services could make a huge difference to individual lives.