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Muscular Dystrophy

I warmly congratulate the hon. Member for Meriden (Mrs. Spelman) on securing this extremely important debate and, in particular, on the way in which she talked about her own family and, of course, Stuart, who is now very much in my mind. I know that public discussion is particularly important to families coping with the realities of muscular dystrophy, in that it raises awareness of the issues that they face. I am grateful to the hon. Lady for giving the House the opportunity to focus on the impact of muscular dystrophy on their lives. The hon. Lady spoke eloquently about muscular dystrophy and the devastating effect that it can have on people living with the condition, their families and those who care for them. In fact, both she and my hon. Friend the Member for Blaydon (Mr. Anderson) raised the issue of the ages to which people with muscular dystrophy live and the differences in those ages. I cannot add to the description given. I should like instead to concentrate on the main thrust of the hon. Lady's speech by responding to her concerns and those of the all-party group that the national health service is failing the thousands of people affected by this condition. At this point, I pay tribute to my hon. Friend the Member for Blaydon, who is the chair of the all-party muscular dystrophy group, and to the other members of the group for their far-reaching inquiry into access to specialist neuromuscular care. I apologise for not being present at the meeting today: I was speaking at a conference this morning. That inquiry and its subsequent report have raised a number of important issues for my Department to reflect and act on. It highlights the shortcomings in existing services and makes it clear that we need to do more to improve services for people living with muscular dystrophy. The Walton report, which is the report from the inquiry, is sadly only one of a series of hard-hitting reports to have highlighted the significant variations in standards of care that still exist for those living in some areas of England and Wales. It is totally unacceptable that people with muscular dystrophy are not being offered the full range of care and support that they need. From my many years of experience as a nurse and community nurse before I entered the House, I know the tremendous impact that conditions such as muscular dystrophy can have on patients and their families. I will not accept excuses that the problem lies with competing priorities or with the availability of resources. I want to respond positively on that range of issues. Let me be clear: we want to ensure that people with this condition live as well as possible for as long as possible and that they do not just live with it—suffer it—but have a real life. In 2005, the Government published the national service framework for long-term conditions, which is a 10-year plan that addresses the very issues highlighted in the report: the inequalities in access, the lack of integrated service provision, the work force shortages and the variable quality of care across the country. The NSF is based on the core NHS values of modernisation, breaking down professional boundaries and creating partnerships between agencies. Achieving the standards set out in the NSF is clearly a huge challenge for some local providers, although others meet that challenge and tackle problems forcefully. There are no central targets or milestones, so it will be for people working at the front line, who best understand local needs, to decide local priorities, and it will be for commissioners to commission appropriate services.