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He had the fatal muscle-wasting disease, motor neurone, and his condition was rapidly deteriorating. Two days earlier, he had rung to warn me that his voice was weak but do come . . . this will be my last interview.
He sat in his electrically operated armchair, back to the windows of his upstairs study, knees raised to avoid pressure on his emaciated hip bones.
Every few minutes he sucked through a straw from a glass of orange liquid; this, it transpired, was a mixture of Lucozade and a high-calorie food powder.
He explained matter-of-factly that the internal muscles degenerate with the external ones, so that breathing, voice and eating are all affected.
You cant chew, and you cant swallow properly, so you tend to choke.
Am I frightened? he said. Oh no, how could I be? Ive worked all these years with disabled people and, really, its a kind of confirmation of my vocation. Before, it was always a case of me and them but I can now say, We disabled.
I mustnt be presumptuousI may find that the physical difficulties get me downbut it has given me a kind of inner joy. If youre a Christian
then you have to believe that the Christian way is the way of the Cross. Ive had a good life. This is just something to be got rounda bit of flak on the way to the target.
That interview was entitled My Fear and the Final Journey Home. It ended with Lord Cheshire saying that the only time he had been really scared during the
war was when, after completing a particularly dangerous mission, he let his guard down for a moment and said:
Weve made it...Give me a course for home.
Ive learned now never to say youre home until youve crossed that finishing tape.
Everyone who is diagnosed with motor neurone disease knows they are heading for the finishing tape. It is our duty to exert every scrap of influence we have to make sure that that final journey is as dignified and tolerable as it can be made.
Lembit Öpik (Montgomeryshire) (LD): I congratulate the hon. Member for South Derbyshire (Mr. Todd) on securing the debate with such apparent easefirst time lucky. If he is indeed reliable in matters of betting, perhaps he will, by way of intervention, indicate the likely winner of this weekends 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 individuals intellectual faculties are rarely affected, so the disease is in some ways the antithesis of Alzheimers, 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 trappeda 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 friendsperhaps more than in almost any other disease I have seenbecause 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 fathers 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 associations 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 ones 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 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, Eastfor 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 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 prioritisationother 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 Ministers view, but I suspect that that is not the case. The association knows that NICE has been considering the matter, but although NICEs 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 associations 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 associations 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 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 targetthree 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 deathmotor neurone disease. Until then, we must do our best for those who cannot be cured and who accept their fate in stoic andusuallyoptimistic 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 agree to the MND Associations 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 quicklycertainly 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.
Mike Penning (Hemel Hempstead) (Con): It is a pleasure to take part in such an important debate, which has included contributions from hon. Members who have personal experience of motor neurone disease and are members of various relevant groups.
I congratulate the hon. Member for South Derbyshire (Mr. Todd) on securing the debate. We have already heard how lucky he has been in so doing, but luck
travels with us when we have a really important debate on something that touches peoples lives. Fate moves in strange ways, as might have happened in the Speakers Office when the debates were being plucked out of the box. I praise the work carried out by the all-party group on motor neurone disease and the hon. Gentleman, who chairs it. He touched on many aspects of the excellent work done by the Motor Neurone Disease Association.
I was not down to respond to the debate on behalf of Her Majestys Opposition until about half-past 4 last night, so a tiny piece of sleep deprivation took place while I caught up with the subject area, but it was self-induced, because once I started to read about the disease and non-invasive ventilation, I became more and more interested in why things have taken so long. Even though I did not get its brief, the associations online services are fantastic. Most of my data will be identical to those already used, but that is useful, because at least I shall not make a huge gaff by quoting the wrong things.
My hon. Friend the Member for New Forest, East (Dr. Lewis) made a powerful speech and talked about referrals. In certain parts of the country, including his own constituency, referrals relating to such technology and other wonderful facilities are available. However, we have heard from the hon. Member for Montgomeryshire (Lembit Öpik) about huge holes in that respect. The National Institute for Health and Clinical Excellence was supposed to create a level playing field across the country to guard against such holes.
The hon. Gentlemans personal experiences were brought out in his speech, and his passion, as president of the association, is there for all to see. He mentioned our enormous lack of knowledge in diagnosing the disease early enough and the importance of having experts in place who know what to look for. While reading the research last night, I was shocked to discover how far advanced this terrible disease can be before someone realises. He told us how his father realised before anyone else. It is amazing that such a situation can arise in this day and age. I wish the all-party group and the association every luck in their work and in raising the money needed.
Lembit Öpik: I have now handed the presidency over to Colin Blakemore, former head of the Medical Research Council, who has seen fit to apply himself to that work because we are making so much progress in research. I am also encouraged that, on examination of the data, the hon. Gentleman came to the same conclusion as the rest of us in this Chamber, and I hope he will join me in encouraging the Minister to take the steps we are looking for today.
I certainly shall encourage the Minister, and I would like to know how we got into this situation. In the interests of MND sufferers and of ensuring that this does not happen to other needy people, we need clinical guidance. However, no one has pointed out the fact that NICE cannot be used as an excuse for not providing the treatments that people require. All primary care trusts can consider the clinical evidence and needs, and make those decisions themselves. NICE was set up to allow for a more level playing field and to move us away from the postcode lottery, as the hon. Member for
South Derbyshire said, but it must not be used as an excuse for delaying treatments or failing to give medicines to needy people.
Mr. Todd: The point has been made about the unevenness of neurological diagnosis ability and expertise in this area. As a member of the governing party, I must mention that our shortage of highly qualified neurologists relative to other countries makes the situation regarding the accurate prescription of such treatment more explicable. We must give attention to that area. The hon. Gentleman is right that it would be wrong to say that the absence of a NICE judgment provides an excuse. Highly qualified people are in place who ought to be making those judgments for themselves.
Mike Penning: I agree with the hon. Gentleman that the NHS and the Department of Health, through its guidance, have overall responsibility for addressing these problems. I am not blaming them for individual cases, because, obviously, we have devolved power to the trusts and PCTs, but NHS governance is essential. The chief medical officer, Ministers and the Secretary of State need to ensure that such problems do not occur.
It is clear from todays evidence, which was so deep and passionate, that this is a real problem. How come so few people, whom we sadly know will die, are having their life experiences and expectancies improved by NIV? Of course, NIV is not perfect for everyone. There are some people for whom it will not help, but it will help a lot more than 3 per cent.
There is no logical reason why NICE cannot improve the situation quickly. As always, one of its concerns relates to negative outcomes. If it is considering a new drug or procedure, it worries that there will be negative outcomes. I have not seen or heard anything from the clinical evidence to suggest that there are negative outcomes from such a procedure. The only things it can do are not help very much or help greatly; it can enhance someones life.
For example, NIV can help people to sleep through the night, which enables the carers and loved ones to have a good nights sleep. That helps them to come to terms with this terrible illness and the fact that they know that their loved one will die. Moreover, if the sufferer has a portable packthe system is battery operated in most casesin the latter stages of the illness, they are able to get out and about and interact with other people, which improves their life experience.
I know that I am no expert, but I cannot see why the procedure is taking so long. I could understand if we were talking about a dangerous drug or procedure, or if this procedure had side effects, but in this particular case it does not.
It normally takes about three months for Ministers to refer a matter to NICE, but this has taken nearly three years. Will the Minister tell us why it has taken so long? I know that the matter has been raised by other hon. Members. I am talking about not just this procedure, but procedures we will follow in future. We need to learn from the mistakes that have been made. Moreover, why do we still have the requirement that a Minister of State has to refer a matter to NICE? Why can NICE not make its own decisions?
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