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Muscular Dystrophy

It is a great pleasure to see you in the Chair, Mr. Sheridan. I congratulate the hon. Member for Meriden (Mrs. Spelman) on her contribution to a debate that is taking place across the country. Yes, there are problems in the west midlands, but I would not want anyone to get the idea that the west midlands is alone in that. I am the chair of the all-party muscular dystrophy group, and in August, after some seven months of intensive inquiries, we produced a report that brought together professionals working at the highest level in neuromuscular care, people doing day-to-day basic care work with those suffering from these conditions, and, in particular, the families taking care of people with these diseases. The truth is that we need real improvements throughout the country. I shall give one example. The hon. Lady spoke about Duchenne muscular dystrophy. One hundred young boys will die this year—two a week—as a direct result of that disease. Because care is sporadic across the country, some will die in their teens. Thankfully, some will not die until their late 20s. That is a direct result of the differences in care. In Denmark, however, they will die in their mid-40s, so we have a long way to go before we can say that we are doing what is best. The term "postcode lottery" has been used, but that is not how things work. We are talking about a question of luck, history and geography. If a person happens to live in a part of the country where someone decided, many years ago, to specialise in neurosurgery, they might just have access to a team of people who happen to be linking up with another group of people who are developing work on, for example, sickle-cell disease and similar conditions. That is not good enough. We need a strategic approach and we need the development, throughout the country, of specialised centres for everyone. Particularly in places such as the south-west, people are travelling ridiculously long distances to receive the treatment that they need. Indeed, the distance that they are travelling is making their condition worse. That is not the care that they should be receiving. The all-party group is linking up with the specialised commissioning groups. This morning we had a meeting. We already have reports from 13, I think, of the groups on where they are in what they are trying to do. Some are positive, some are negative and some are neutral. We will not let go; we will continue campaigning with them to make the issue a priority. There is huge public support for the issue. We launched our report on 24 August, and in the days that followed, we had at least 200 pieces of coverage across the media, from BBC 1 through to local press and the specialist press. There is huge interest in the issue, because what is happening could be avoided.