Mr. Dave Anderson (Blaydon): 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.
The Parliamentary Under-Secretary of State for Health (Ann Keen): ... 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.
+++
Mr. David Anderson: This morning, the all-party group heard evidence from a specialist working in the west midlands about the practical, day-to-day problems that arise when someone with one of these diseases goes into a normal emergency service because they have fallen over and broken their leg or because they have a headache, but they end up being kept in for much longer than they need to be because their disease is not recognised. The Minister mentioned resources, but by speaking to people on the ground we can see that money can be saved by giving people direct access to the specialist services that they need, and that money can be reinvested in looking after them properly.
Ann Keen: I absolutely agree with my hon. Friend, and the point was made clear to me when I had a meeting with young people and their relatives in my office some time ago. It is clear that we still have a lot of work to do on getting best practice out to all clinicians.
Back to front page | House of Commons Contents
| Promoted by Paul Foy on behalf of Dave Anderson, both of St Cuthbert's Church Hall, Shibdon Road, Blaydon, NE21 5PT |