Montgomeryshire Liberal Democrats

LESS THAN ONE IN 30 MND SUFFERERS HAS ACCESS TO TREATMENT THAT COULD INCREASE PROGNOSIS BY 50% - ÖPIK

Lembit Öpik, Liberal Democrat MP for Montgomeryshire, contributed earlier this week to a debate on the availability of non-invasive ventilation to people with motor neurone disease.

An active patron and former president of the Motor Neurone Disease Association, Mr Öpik was campaigning for greater access to this treatment for MND sufferers: less than one in 30 victims of the disease currently have access to this kind of treatment.

Non-invasive ventilation (NIV), involving pumping warm air into the lungs, improves not only the immediate quality of life, but, on average, adds seven months to the lives of those with the disease.

With an average fourteen month period between diagnosis and death, the availability of this kind of treatment represents a 50% increase in survivability.

During the debate, Lembit said:

"8,000 are likely to die in the time that it will take the Department of Health and the National Institute for Health and Clinical Excellence to reach a conclusion about non-invasive ventilation.

"I do not believe that five years is an acceptable delay, given that we already have something that is proven to extend life by a considerable degree."

Responding to the debate on the issue of the delay to NICE guidance on NIV, Health Minister, Dawn Primarolo MP, said:

"I do not pretend for a moment that the handling of that important guidance topic has been in any way satisfactory, and I have outlined some of the factors at work, although they are no excuse. I hope to be able to reassure him that I acknowledge the regrettable problems that have occurred and that we and NICE have learned lessons from the experience. NICE will be progressing the topic at the earliest opportunity."

Speaking after the debate, Lembit said:

"I am greatly encouraged by the Minister's response and I hope that NICE will reach a satisfactory conclusion on this issue as soon as possible as NHS practitioners around the UK will benefit from their advice, and this crucial treatment for this dreadful disease can be expedited."

Ends/diwedd

Notes to editor:

Below is a copy of Lembit's speech during the debate:

I congratulate the hon. Member for South Derbyshire (Mr. Todd) on securing the debate with such apparent ease-first time lucky. If he is indeed reliable in matters of betting, perhaps he will, by way of intervention, indicate the likely winner of this weekend's Grand National. That would make me very happy and give a quick way to make a considerable contribution to the coffers of the Motor Neurone Disease Association.

My involvement with the association did not come about for happy reasons. My father died of motor neurone disease in April 2005, and the hon. Gentleman and the hon. Member for New Forest, East (Dr. Lewis) accurately described exactly the process that takes place when someone experiences that affliction. In simple terms, the body shuts down from the outside in. As we know, the individual's intellectual faculties are rarely affected, so the disease is in some ways the antithesis of Alzheimer's, in which the body remains sound but the mind becomes frail. With motor neurone disease, the mind remains sound and observes the body becoming frail, until a person is indeed trapped-a prisoner in their physical form, knowing that it is only a matter of time before the end comes.

My view on the disease is exactly as that set out by the hon. Member for South Derbyshire: the experience of the disease is undergone not just by the immediate sufferer, but by the family and friends-perhaps more than in almost any other disease I have seen-because everyone knows where it is heading. Also, because of the difficulty in diagnosing this disease, it is, as we have heard, 14 months on average from diagnosis to death. In my father's case, it was a matter of weeks from him effectively diagnosing his own condition to his death. It is likely that affected individuals have the disease in their body for much longer, but we have not yet found a reliable form of diagnosis. That is a matter for research and it may offer a pointer in the direction of cure.

What is most remarkable about the disease, and what I have discovered since my first formal link with the association, is, first, the inescapability of the outcome. People pretty much know that they are going to die from the disease at the point of diagnosis. The second remarkable thing is the irrepressible outlook of those who experience the disease. The hon. Member for New Forest East described the archetypal viewpoint of many who suffer it. When I started visiting the association's branches and seeing those who suffer from MND, I recognised their positive acceptance of the circumstance. I have little doubt that that acceptance, in itself, extends the lives of those who suffer the disease.

One often sees a degree of black humour, but there is always warmth and rarely resentment about the cards that life has dealt. That is salient to the matter of non-invasive ventilation. The better the care of those who have MND, the better their outlook and the less abandoned they feel, and the stronger their physical ability to extend what life they have left to them.

What is most encouraging about non-invasive ventilation is the relative simplicity of the technique. It is not rocket science. It does not even involve oxygen. It involves pumping hot air into the lungs. In essence, it helps weak lungs to breathe more normally through the use of air pressure. That is very much it. As such, it is not difficult. One has to be an expert to understand how it works and to be a practitioner, but compared with the many challenges faced by medicine these days, it is not top of the technological list. In that sense, it produces beneficial effect with relatively little difficulty. That is why it is called non-invasive ventilation.

We should remember what non-invasive ventilation does: if one cannot breathe, one cannot sleep; if one cannot sleep, one becomes tired, which weakens one's ability to fight the disease. Ultimately, the lack of respiratory capacity leads to death. Indeed, that is how my father died. As we heard, non-invasive ventilation improves not only the immediate quality of life, but, on average, adds seven months to the lives of those with the disease. I recognise that seven months is half the usual span from diagnosis to death, but it represents a 50 per cent. increase in survivability. That is 50 per cent. not only for the sufferer; for the reasons that I have described, it is also 50 per cent. for the families.

I am persuaded that the research is robust. It has already been cited, but is so important that I shall cite it again. It is by S.C. Bourke et al, published in volume 5, issue 2, pages 142-47, of The Lancet Neurology in February 2006, and entitled, "The effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised controlled trial".

I put that on the record for those specialists and correspondents who take a particular interest in the disease. They will see how clear-cut and unequivocal the research is. Indeed, in a complementary prospective study, non-invasive ventilation increased survival in MND sufferers by almost 11 months, so there is little doubt that it does what people claim. Practitioners are completely persuaded that this is the way to go.

The people of New Forest East are blessed in two ways. First, they have an outstanding Member of Parliament, in the hon. Member for New Forest East-for the purposes of this debate, my hon. Friend. Secondly, they have an outstanding medical facility in Southampton hospital. Last year, in my then capacity as president of the association, I had the honour to visit that facility, and it was made perfectly clear that, together with other forms of support, non-invasive ventilation is an important tool in combating premature death from the disease.

That being so, it seems obvious that non-invasive ventilation should be readily available to those with motor neurone disease who are capable of benefiting from it. Yet, as we have heard, fewer than one in 30 victims of the disease has access to it. I am sorry to say that my constituency of Montgomeryshire is very much a black hole, and as far as I can ascertain, there is no availability whatever of that methodology in the area. I therefore hope that we can make a practical intervention today on the methodologies available to MND sufferers throughout the United Kingdom.

We should think about the figures: with 5,000 people suffering MND at any one time, fewer than 200 are experiencing the benefits of non-invasive ventilation. The delay is baffling. Those hon. Members who have already spoken share my bemusement. The hon. Member for South Derbyshire said that thousands will have died by 2011, and the hon. Member for New Forest East said that 8,000 are likely to die in the time that it will take the Department of Health and the National Institute for Health and Clinical Excellence to reach a conclusion about non-invasive ventilation.

I do not believe that five years is an acceptable delay, given that we already have something that is proven to extend life by a considerable degree. Furthermore, it is usual that caution should be at the heart of such delays. So many times I have heard people saying, "We would like to do it, but we have to make sure that there are no unintended consequences." I cannot believe that there is any unintended consequence or any careless oversight, the damage caused by which would exceed the damage caused by the premature death of people who would have lived longer had they received non-invasive ventilation.

The cost-benefit calculation must surely be in favour of the expeditious implementation of a relatively inexpensive methodology, which has been tried and tested thousands of times, with individuals consistently praising the benefits of the ventilation technique. I am guessing, but I assume that this is caution. However, that caution is itself creating the unintended consequence of people dying more than half a year sooner than they would otherwise have died.

The only other possible explanation is that of prioritisation-other methodologies are so important that they exceed the benefits that sufferers gain through non-invasive ventilation. I would be interested to hear whether that is the Minister's view, but I suspect that that is not the case. The association knows that NICE has been considering the matter, but although NICE's work is unquestionably worth while, the association argues that introducing non-invasive ventilation treatment is a far higher priority than some of the other choices.

The long-term solution is to find a cure. That is an important element in the association's work. During the past decade, we have made more progress in dealing with the disease than in the rest of medical history. The primary objective of the association has changed from care to care and cure. The care agenda is all that it had when there seemed to be no prospect of a clinical solution to this dreadful disease. However, some of the best medical researchers and practitioners in the world are hard at work on the case. I praise the work of the association's global symposium in Birmingham last year and give credit to the Minister for opening that symposium, the first time that a Minister has done so in the history of symposiums on this matter.

The parallel objectives of care and cure are exactly the right way for the association to go. In recognising the importance of introducing non-invasive ventilation, I hope that we do not take our eye off the ball, as curing the disease would obviate the need for many of the support mechanisms. I have previously described the search for a cure as attempting to complete a 1 million-piece jigsaw when one has only a few pieces. Ten years ago, we probably had two or three, and now we have a few dozen, but as that investment is made, the pieces will begin to fall into place exponentially.

I praise the Government once again for their support in the campaign to raise £15 million, as an initial target, for the cure fund. The former Prime Minister, Tony Blair, was very supportive of that campaign, and the current Prime Minister was very responsible, with other Ministers, for securing the potential for match funding of £7.5 million towards specific projects designed to research and test cures. I am glad to report that more than £12 million has been raised towards that £15 million target-three years ahead of schedule. I am optimistic, therefore, that the cure route will ultimately prove to be the long-term solution to all that we are discussing. It will save money and lives.

In the shorter term, however, we must find ways to care for those who cannot be cured. Our mission is to find a cure not for death, but for a specific and particularly cruel form of death-motor neurone disease. Until then, we must do our best for those who cannot be cured and who accept their fate in stoic and-usually-optimistic mood. NIV is simple, relatively cheap and the single best intervention for extending the life of a person with MND. Fewer medical investments are more capable of helping the health service to achieve its stated goals of improving quality of life and saving lives.

For all those reasons, I fully support what hon. Members have said today. Will the Minister now adopt the MND Association's humble request to prioritise the work on NICE NIV clinical guidelines from April 2009? The association believes that, with planning and consideration, it should be possible to prioritise the necessary work on NIV and to get it on stream relatively quickly-certainly this year. It can be done, and we have all agreed that it will be done at some point, but please let us not wait until 2011, when many more people will have died without having been given the opportunity of that priceless improvement in their quality of life.

For the sake of the thousands of UK residents experiencing MND and the thousands of families living with them, and for the sake of saving lives that cannot yet be saved but which can be made longer and more comfortable, I hope that the Minister will accord with our request. The value of this cannot be measured in the money that it costs; it can be measured only in love, compassion and humanity. I hope she will oblige.