Mr. Dave Anderson (Blaydon): It is a great privilege to work with you again, Mr. Cummings. A long time ago, we worked together in a very different place. I congratulate my hon. Friend the Member for Bristol, North-West (Dr. Naysmith) on securing the debate, and I assure those present, particularly Hansardstaff, that I shall do my best not to use words of more than three syllables.
I am not a health professional, as many colleagues present are. The hon. Member for Wyre Forest (Dr. Taylor) spoke about the Merck Manual; the only Merc I ever had was a 1990 230 estate, but that was an automatic, not a manual. My background is in coal mining, and I was once a care worker for elderly people, but I have spent a lifetime in a family that has been devastated by muscular dystrophy.
Within a month of coming to this place, I was asked whether I would be prepared to chair the all-party group for muscular dystrophy, and I was pleased to take up that opportunity. I want to put on record my thanks and the thanks of those involved with the parliamentary group, as well as campaigners on muscular dystrophy, for the great response that we have had so far from the Minister. She has shown real good will in trying to take forward the campaign with which we are involved. I thank her in particular for giving us access to the civil servants in the research department whom we met during the recess. They were very positive about their role in helping us to maximise opportunities to develop good-quality research.
I shall spoil the party a little bit now, though, by telling the Minister that I am going to write to her about an issue that has arisen as a result of those meetings. It is ludicrous that Government money that had been allocated to the development of drugs to help people with this disease has been classed as underspend because it has not been spent within a certain time scale, and will probably be clawed back. That money has been underspent not because people have not wanted to use it, but because the phasing of what they have been doing did not work as they thought it would. It is not rocket science, but it is research science. Surely, the essence of research is that things develop in a way that is uncertain. Things sometimes go much quicker than expected and sometimes much slower. That money is a relatively small amount in the Department’s global sum, and the fact that it has not been spent within the expected time scale should not be a way of getting money back into the Department. It should be kept by the groups doing the research.
I have received information from the Muscular Dystrophy Campaign that I want to take hon. Members through to inform them of the current situation. There are more than 60 types of muscular dystrophy and related neuromuscular conditions - rare conditions for which there is no cure. That shows the importance of the research work being done. It is estimated that such conditions affect more than 1,000 children and adults for every 1 million of the UK’s population, and conditions can be genetic or acquired. Some types, such as Duchenne’s, are aggressive, causing muscular deterioration and wasting. They are responsible for respiratory and cardiac problems and, sadly, result in premature death, particularly in young boys. Other conditions can cause lifelong disability. My sister was 53 when she died and my brother was 48. They had a lifelong disabilities, but not very long lives.
The campaign invests about £3 million of its own money in research, care support services, muscular centres, development networks, and in sharing information and resources. It has pioneered research into treatments and cures for nearly 50 years, but it cannot do everything on its own. The House, the Department, the Government and the Minister all have a responsibility, and I know that the Minister takes her responsibility very seriously.
Last December, the campaign produced a report called "Building on the Foundations: Establishing a Specialist Neuromuscular Service across England", which found classic disparities such as those that the hon. Member for Northavon (Steve Webb) mentioned. In the north of England, where we have a strong lead in muscular research, the average survival rate for patients with Duchenne’s muscular dystrophy is 30 years, whereas in the south-west it is, sadly, only 18 years. That is a huge difference in life expectancy. The report also found that two out of three primary care trusts do not support a muscle clinic for either adults or children, which means that many patients do not receive the special care that they need. It also found that the service is dependent on a handful of world-class specialists. What will we do when those people retire or move on to another area and there is no on left to come behind them? We must take control and embed what they are doing into a national structure.
Last month, the Muscular Dystrophy Campaign carried out the "State of the Nation" survey as part of its muscle week. The survey focused specifically on access to specialist services, quality of life and the impact of living with a rare disease. There were 1,000 respondents, of whom 50 per cent. said that their experience of the diagnosis process was either poor or very poor. The results showed that half of patients have not seen a physiotherapist and that half do not have access to a specialist neuromuscular consultant. The survey also found that 80 per cent. of patients do not visit a specialist centre or receive specialist care for their condition. The campaign believes that those problems can be put right, and we seek commitments from the Department on its recommendations. It would be great if the Minister said yes today, but I do not suppose that she has the authority to do so.
The campaign recommends that we should, as a matter of course, designate specialist muscular services within the Department of Health’s specialised services definition set, so that specialised commissioning groups can be set up across England. Each such group, and responsible bodies in Scotland, Wales and Northern Ireland, should follow the lead of the South West SCG and carry out a comprehensive review of the provision of specialist services. Let us know what is going on out there. We should also ensure that every person who is affected by muscular dystrophy has access to a care co-ordinator or key worker who can take a lead on their behalf with the care team and provide them with support, information and a regular review of their care plan. We need more. Far be it from me to fall out with my hon. Friend the Member for Norwich, North (Dr. Gibson), but the truth is this: socialism might put this matter right, but whether there is socialism, capitalism, a laissez-faire approach or a middle-of-the-road system, those people are not being looked after properly, and we need a system that does look after them properly.
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The Parliamentary Under-Secretary of State for Health (Ann Keen): ... My hon. Friend the Member for Blaydon (Mr. Anderson) mentioned a meeting in the Department with colleagues who brought constituents with muscular dystrophy. It was important that that meeting with officials was held at that time. My hon. Friend said that he has written to me. I can say to him before seeing the letter that I will meet with him, but also that I believe a review is necessary. Let me consider that in preparation for our meeting. The director of national specialised commissioning has been in discussion with the Muscular Dystrophy Campaign about its concerns, so some progress has already been made, but there is obviously more to do.
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