Mr. Dave Anderson (Blaydon): I congratulate the hon. Member for Ribble Valley (Mr. Evans) on raising this subject. The debate is very timely. I had been in the House for only a month when I attended a lobby in 2005 at the invitation of some children at a local school whose teacher had a son who was suffering from DMD. I knew nothing about it, although I come from a family that has been devastated by myotonic muscular dystrophy.
However, the hon. Gentleman highlighted the big difference between myotonic and Duchenne: we are talking about young boys dying before they are out of their teens. I have a great deal of sympathy for the Minister because we have a debate almost every day of the week about specific diseases, but here we are talking about young boys dying, so this is a special case.
I do not wish to say anything further about the research and the drugs that are being developed as a result of the work being done by people such as Professor Muntoni, as that has been well rehearsed by the hon. Gentleman, except to say that more money is needed.
Let me explain what motivated me to attend and speak in this debate. For the last four years, we have met Ministers in both this House and the other place, and what we have stressed to them is that although it is clear that we need more research and more drugs, we are not sharing good practice on how to care for these boys. We are not sharing good practice on physiotherapy, on how to help them to breathe properly, or on how they can get access to wheelchairs, which can make a massive difference to their lives. A recent report by the Muscular Dystrophy Campaign highlights that. I ask the Minister to meet me - and perhaps the hon. Gentleman - and the representatives of the campaign to go through the report, because it is very clear that commitments that we have been given over the past three years that good practice on care would be shared have not been met, so things are not going as they should be.
The NHS national specialist commissioning group should now recognise neuromuscular services as being specialist. If it does not, the sharing of good practice will not be focused. I know there is a big ongoing debate in this House about how to focus on and target such things. Part of the reason for setting up the specialist commissioning group is to make targeting work. If muscular dystrophy is kept outside that, it will fall further behind.
I want to close by returning to the report that the hon. Gentleman mentioned. It says the system has failed; however, it is not the system but Members in this House who have failed. If we go back to a lobby next June to meet the boys we met a fortnight ago and more of them are no longer there because they have died, we will have failed them again. We must put this right.
The Minister of State, Department of Health (Dawn Primarolo): I congratulate the hon. Member for Ribble Valley (Mr. Evans) on securing this important debate, and I also congratulate my hon. Friend the Member for Blaydon (Mr. Anderson). I know that public discussion is particularly important to parents coping with the realities of DMD, in order to raise awareness of the issues they and their children face, and I am grateful to the hon. Gentleman for having addressed them so eloquently in the House tonight and for providing the background and explaining the issues that need to be understood.
The case has been made that enhanced medical and clinical research, better support services and care closer to home can make a major difference to the quality of life of people with DMD, and, indeed, can help to extend their lives, and the Department is aware that neuromuscular services do not always adequately meet the demands of the 1,500 people living with DMD, their families and carers. Three hard-hitting reports published by the Muscular Dystrophy Campaign on the provision of neuromuscular services for all the dystrophies highlighted significant variations that exist across localities. The Action Duchenne Report "Bringing Duchenne Research into the Clinic" highlights the significance and potential of the research that is under way.
The United Kingdom is a world leader in health research. These advances could not have happened without the skills and commitment of scientists and clinicians and, of course, the unstinting support of the voluntary sector. I know that Action Duchenne is lobbying for ring-fenced funding for Duchenne research, and the hon. Gentleman referred to a letter I wrote. The Government position is that neither the National Institute for Health Research nor the Medical Research Council can ring-fence funding for specific conditions or diseases. The reason is that each piece of research and each application should be assessed. Both organisations welcome applications for support for research into various aspects of human health. These are subject to peer review and judged in open competition, with funding awarded on the basis of the scientific quality of the proposals made.
The important point is that the Government are doing more than ever to try to support health research. The implementation of the research strategy "Best Research for Best Health" has resulted in an expansion of our research programmes and in significant new funding opportunities. That has been boosted by the Department's 2007 comprehensive spending review settlement, which gave substantial extra sums to the MRC and NIHR. By 2010-11, total Government investment in health research will top £1.7 billion.
So the funding is there. It must be right that the NIHR and MRC awards are made through an open, competitive and peer-reviewed process, so that we get the best research. We do not say that only certain types of projects should apply, and in that way we support the best science, get the best possible results, and reinforce our international standing.
As the hon. Gentleman and my hon. Friend said in their eloquent contributions this evening, we still fight against some dreadful diseases that lack treatment and cure and exert a dreadful cost on the individuals concerned and their families. All of us want the new discoveries and developments that hold out the hope of new treatments to benefit patients at the earliest possible point. That is why the Government place an emphasis on experimental and translational medicine - the very areas on which the hon. Gentleman touched.
Research means better patient care and a better future. It is this Government's aim to enable every patient in the NHS to have the right to take part in medical research that is appropriate for them, if they choose to do so. That is especially important given the points that the hon. Gentleman made about the funding of the trial that is under way now. He may be aware that my right hon. Friend the Secretary of State announced plans at last week's health research summit that will ensure that patients are made aware about ongoing research, and about opportunities for them to join clinical trials.
I know that a particular issue of concern to people with DMD and their families is timely access to new drugs and treatments. It is absolutely understandable that patients and their families want potential treatments to become available as soon as possible, but we need to ensure that the quality, safety and efficacy of any potential treatments is not in doubt. The process can sometimes seem frustratingly slow to those individuals and their families, but it is essential that the appropriate trial protocols are followed. That also relates specifically to the points that the hon. Gentleman made about the current funding of £2.2 million for trials.
I know that one issue Action Duchenne has lobbied hard on is access to highly specialised services closer to home, and both my hon. Friend and the hon. Gentleman touched on that. Although more than 60,000 people in the UK have a muscular disease or a related condition, that is not a large number compared to the total number who need access to specialist services. Sometimes it is simply not possible to ensure that services with the necessary specialised focus are available close to the patients. It is difficult to see at this time how the level of specialist services that is needed could be provided in every locality. I take the point made by my hon. Friend about the need to share experience and understanding in the service. We should look closely at that.
In any area, it is for NHS commissioners to commission services that reflect the needs of patients and to be informed by good practice in other health communities. The local involvement networks will play a key role. They will enable a range of people to influence the commissioning and provision of health and social care and to bring real accountability to the system, from commissioning to direct provision. It is important that as part of how we improve services we give a stronger collective voice to patients and local groups associated with specific conditions. They can influence the decision makers to ensure that services are more responsive to their needs.
The national service framework for long-term conditions sets out the standards of health and social care we expect people with long-term neurological conditions, including DMD, to receive from diagnosis to end-of-life care. The quality of care that people with neuromuscular conditions receive will be raised across the country as a result of the publication on Monday of "High Quality Care for All". Lord Darzi's report sets a new foundation for a health service that empowers staff and gives patients choice. It will ensure that health care is personalised and fair, that it includes the most effective treatments within a safe system, and that it helps patients to maintain a good quality of life.
The report will give patients more say through initiatives such as care plans for those with long-term conditions, a guarantee that the most effective drugs will be available to all and the provision of the right to chose care providers, including GPs. Personal budgets will be piloted for 5,000 patients with complex conditions.
I welcome the debate and I know that the hon. Member for Ribble Valley and my hon. Friend the Member for Blaydon understand the complexities and challenges. I share their desire to see that people living with DMD receive the services and treatment that they need and deserve and I can assure them that the Government will continue to provide support and encouragement to ensure that that happens. I would be more than delighted to meet the hon. Gentleman and my hon. Friend together with a delegation - they both referred to a small delegation - to continue the discussions on the issues that they have both so eloquently identified this evening. I congratulate them both on raising this important subject.
Question put and agreed to.
Adjourned accordingly at thirteen minutes past Nine o'clock.
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