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Planning and Development (Essex)

8.45 pm

Bob Spink (Castle Point) (UKIP): I have received many complaints about the arrogance of Castle Point borough council and the SEEVIC college in misusing and planning to develop land and public assets, including through the demolition of publicly owned buildings. This is being done behind the backs of the public. I took up the SEEVIC principal’s offer of a meeting to discuss this, but he then declined to meet me, as he also did with one of my residents. I congratulate and thank all the public-spirited people who have signed this important petition, which states:


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Duchenne Muscular Dystrophy

Motion made, and Question proposed, That this House do now adjourn. —[Liz Blackman.]

8.47 pm

Mr. Nigel Evans (Ribble Valley) (Con): Some Members have commiserated with me for having an Adjournment debate at the end of a relatively late-night sitting. I was first elected to the House in the early 1990s, and I once had an Adjournment debate that started at quarter to 6 in the morning, so I know what late-night sittings are all about. This is relatively early for me.

Duchenne muscular dystrophy is an important subject, and I am grateful to the hon. Member for Blaydon (Mr. Anderson), who is chairman of the all-party group on muscular dystrophy, for expressing a wish to contribute to this short debate. Duchenne muscular dystrophy is a severe and progressive muscle-wasting disease caused by variations in the dystrophin gene on the X chromosome, which results in the loss of the protein dystrophin in muscle cells. It primarily affects boys. The reason that I asked for this Adjournment debate is that, publicly and even inside the House of Commons, very little is known about the disease. I think that it would therefore be beneficial to give the House some short, practical information about it.

Duchenne muscular dystrophy occurs in one in every 3,500 male births worldwide, and 100 children in the United Kingdom are born with DMD every year. Two children in the UK die every week as a result of the condition, and it is the biggest genetic killer in the UK. By the age of 11, most boys with the condition are confined to a wheelchair. Degeneration of the lungs means that boys with DMD need a ventilator to breathe. The muscles of the heart degenerate by the late teens, and the condition is severe enough to affect life expectancy. The average life expectancy among boys treated for DMD is the mid to late-20s. Likely behavioural characteristics are limited social skills, attentional deficits and depression. There is no cure at present.

On 31 October 2007, the Prime Minister’s office issued the following statement, also printed on the front page of the Action Duchenne booklet, which accompanied the lobby of Parliament just a few weeks ago:

The work of the charity Action Duchenne has secured £2.2 million of Government funding for the MDEX project and its research. Of that amount, the Minister of State, Department of Health, the right hon. Member for Bristol, South (Dawn Primarolo), had this to say in a letter sent to an Action Duchenne parent on 7 January 2008:

At this moment in time, there are only two research centres of excellence in the UK—one in London, the other in Newcastle.

I have long been aware of DMD as a condition, but I was not aware by any stretch of the imagination of the impact it has on families or of the severity of the
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disease. At a recent lobby of Parliament by Action Duchenne, I met my constituent, Bernard Mooney, whose son Ben is seven years old and has DMD. Ben’s prognosis is that he will be in a wheelchair by the end of primary school, becoming completely paralysed by his late teens, leading to a shortened life expectancy of around 20 years. Ben has been named as a suitable candidate for a trial of a new therapy at Newcastle’s specialist DMD centre, which it is hoped will slow the wastage in his legs.

The chief executive officer of Action Duchenne, Nick Catlin, has also contacted my office, as did a number of other people when they knew that my Adjournment debate was happening. Doron Rosenfeld has a son called Gavriel who is six years old and was diagnosed two years ago with DMD; his family were told that he would live to his early 20s and that there was no cure. It is a harsh reality for any parent to face—that your child will degenerate in front of your very eyes—but the situation is not as definite as the Rosenfelds were told. Research is close to making a major breakthrough. As a consequence, Doron and Kerry, his wife, have set up the GM Trust.

I hope that everyone listening to the debate or who reads it in Hansard will take some time to visit the website, where they will find an amazing film. If they contact the site administrator for a password, they will gladly be supplied with it. I would like to take this opportunity to thank Lord Attenborough for his contribution to the video. The significant weight that he has put behind this project will ensure that those who are unaware of the particular condition will get a better understanding of what it is all about.

In part of that film a man called Mark Styler is interviewed about his life with DMD. He talks movingly about living a life of “reasonable quality”, while being barely able to breathe and almost completely paralysed through muscle degeneration. Every breath is a struggle, aided by a respirator, but his positivity and attitude were amazing to behold. I was humbled by watching the video. He said that he decided that it was not the quantity but the quality of life that mattered. Sadly, he died recently at the age of 34, but he was able to live that relatively long life because of the advancement in his treatment.

DMD is an incredibly severe disease. The impact on the child is sadly there before our eyes and the impact on the parents is just as real and terribly painful. Doron Rosenfeld told me that it was “all consuming”. We have a moral obligation to do whatever we can to advance the treatments for DMD. We cannot let the issue be brushed under the carpet—a phrase that my office has heard from a number of the people who contacted us.

DMD is, as I have said, the biggest genetic killer in the UK and £2.2 million is simply not enough to ensure that we are doing our utmost. The GM Trust alone has raised more than £1 million in the last year. Doron and Kerry Rosenfeld are an inspiration, but they would be the first to say that they have received tremendous support from the local community. Anyone who sees their son and knows of the story of DMD is only too happy to support the cause. One lady who contacted me about her grandson who has DMD has helped to raise £23,000 over the last few years just through local charity nights. I congratulate her and everyone else who has got involved in these campaigns.

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Those who have loved ones suffering from DMD feel that the Government are simply not doing enough. I realise that there are competing demands for funds in all fields of medicine, but we are talking about children who, in many cases, are failing to live past the age of 20. It is unacceptable that, in 2008, we should turn around and tell them and their parents that there is no cure. We should be funding research in current projects and clinical trials. The 100 boys who will born with the disease in the United Kingdom in 2009 should not be told that nothing can be done. Words of sympathy from Ministers will simply not be sufficient. There needs to be a commitment to further funding, to increased funding, and to ensuring that the funding is ring-fenced for DMD.

There is always—rightly—an outcry when children are killed on the roads. However, a huge amount of money is available for road safety, and children are taught at an early age about the dangers of crossing the road. In 2007, 121 children were killed on the roads. We would not think of telling their parents that there was nothing we could do about road safety. It is also entirely unacceptable that there are only two centres of excellence devoted to DMD.

Ben Mooney lives in Clayton-le-Dale in my constituency. Every six months, his parents are faced with either a three-and-a-half-hour journey to Newcastle or a four-and-a-half-hour drive to London for his check-up. They are not alone, but the reason they need to undertake that journey is the lack of a translational network across the United Kingdom. I do not know how we can justify asking parents and children to travel those distances, particularly given the children’s condition. Perhaps it is easier when the children are aged six or seven, with no noticeable signs of DMD, but when they become wheelchair-bound, transport for a family becomes even more difficult.

As the disease progresses, Ben will need constant care on the journey, which means that both parents must take time off work. I am amazed that families such as the Mooneys have no other option. I should like the Government to commit themselves to a workable, translational network of care. A centre in the new hospital that I believe is being built in Manchester would be a good start. The Department of Health must ensure, especially in the current climate, that local GPs know about DMD, and that information is available to them so that they are in the best possible position to offer advice to families. I fear that too many GPs are made aware of advances by parents after those parents visit Newcastle or London. That should not be the case.

This highlights the problem that there is no central push to tackle DMD and bring hope to families affected by it. We should not allow people to think that it is everyone for himself; the Government need to take a strong lead by making a commitment to helping those families. As Professor Muntoni, a professor of paediatric neurology, notes in a film on the GM Trust website, things have changed dramatically in the last few years. Scientists are close to a breakthrough, and we genuinely can make that breakthrough happen more quickly. However, only the Government can provide the catalyst for advancement. I know that simply throwing money at the problem is not the solution, but a proper and structured investment programme, coupled with a translational network across the UK, will make an enormous difference.

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I should be grateful if, having heard what I have said, the Minister would agree to meet me, along with a small delegation, to discuss DMD, so that those people’s concerns and hopes can be aired and we can make progress. It would be a small step, but a welcome one, although it would be just for the short term. In the longer term, I should like the Government to take some points away from the debate.

First, funding for DMD research and clinical trials must be increased and ring-fenced. Secondly, families must have better access to treatments and specialists, which means expanding the models of Newcastle and London to create a better translational network across the UK. Thirdly, the profile of DMD must be raised both publicly and in the NHS. Parents should not be forced to seek information; it should be readily available.

This is, of course, not a party political topic, or one on which to score points. I did not realise the severity of DMD until Bernard, Ben’s father, came to see me. I applied for the debate because I felt that we ought to know about DMD. The House has now heard about its effects, what children who suffer from DMD and their loved ones are going through, and what could be done about it. These proposals need serious consideration. We have a moral obligation. I believe that not enough is being done now, and it would be shameful if we did not reassess the steps that we have taken so far and ensure that we do more. Parliament is realising what a serious issue this is. The right hon. Member for Manchester, Gorton (Sir Gerald Kaufman) approached me only yesterday and spoke very movingly of a constituent whom he has met and who suffers from DMD.

Ben Mooney and Gavriel Rosenfeld are adored by their parents, who would do anything for them. They are not alone. It is high time that we did more to help them.

8.59 pm

Mr. David Anderson (Blaydon) (Lab): 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
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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.

9.2 pm

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.

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