31 March 2009
Mike Penning winds up a debate on the availability of non-invasive ventilation (NIV) for MND sufferers which can greatly alleviate sleep disturbance and prolong life. He criticizes NICE for the delays in setting up a study of the use of NIV.
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 people’s lives. Fate moves in strange ways, as might have happened in the Speaker’s 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 Majesty’s 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 association’s 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. Gentleman’s 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 that we are looking for today.
Mike Penning: 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 today’s 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 someone’s life.
For example, NIV can help people to sleep through the night, which enables the carers and loved ones to have a good night’s 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 pack—the system is battery operated in most cases—in 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?
If we want to take politics out of the NHS and allow clinical experts to make decisions on our behalf, why does a matter still have to go to the Department of Health for the Minister to make a decision on the referral? Surely, such decisions are for NICE to make, and to make a lot earlier. For example, it could make a decision as trials come towards their end—there is no need to wait for them to finish—and then refer the matter to the Minister. It could then be referred back to NICE. NICE should be engaged at the latter part of trials, which would speed up procedures all the way through.
We have had an excellent debate and some passionate and informative speeches from people who are much more knowledgeable on the subject than me. I encourage the Minister to look again at the procedures and to use whatever powers she still has to ensure that NICE introduces such a procedure as soon as possible to ensure that people do not use the lack of NICE guidance as an excuse for not making the procedure available throughout the country. She should also consider the shortages relating to clinical expertise. Please give people with this disease the opportunity to have a better and longer life. Although the disease is, sadly, incurable, we can still give sufferers much better life experiences.
10.34 am
...
LATER INTERVENTION IN THE SAME DEBATE
Mike Penning: I thank the Minister for her description of what was happening, and I realise that she is not condoning the delays. What was the period between the committee referring the matter to the Minister and the Minister referring it to NICE? If the Minister cannot answer that question today, perhaps she could drop me a line.
Dawn Primarolo: As I understand it, the period was very short indeed. The role of Ministers is now to formalise the work that pre-dated the request for them formally to refer something to NICE. I was not personally involved in this case, but in others where I have been involved, we would be talking about an incredibly short period.
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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 people’s lives. Fate moves in strange ways, as might have happened in the Speaker’s 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 Majesty’s 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 association’s 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. Gentleman’s 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 that we are looking for today.
Mike Penning: 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 today’s 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 someone’s life.
For example, NIV can help people to sleep through the night, which enables the carers and loved ones to have a good night’s 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 pack—the system is battery operated in most cases—in 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?
If we want to take politics out of the NHS and allow clinical experts to make decisions on our behalf, why does a matter still have to go to the Department of Health for the Minister to make a decision on the referral? Surely, such decisions are for NICE to make, and to make a lot earlier. For example, it could make a decision as trials come towards their end—there is no need to wait for them to finish—and then refer the matter to the Minister. It could then be referred back to NICE. NICE should be engaged at the latter part of trials, which would speed up procedures all the way through.
We have had an excellent debate and some passionate and informative speeches from people who are much more knowledgeable on the subject than me. I encourage the Minister to look again at the procedures and to use whatever powers she still has to ensure that NICE introduces such a procedure as soon as possible to ensure that people do not use the lack of NICE guidance as an excuse for not making the procedure available throughout the country. She should also consider the shortages relating to clinical expertise. Please give people with this disease the opportunity to have a better and longer life. Although the disease is, sadly, incurable, we can still give sufferers much better life experiences.
10.34 am
...
LATER INTERVENTION IN THE SAME DEBATE
Mike Penning: I thank the Minister for her description of what was happening, and I realise that she is not condoning the delays. What was the period between the committee referring the matter to the Minister and the Minister referring it to NICE? If the Minister cannot answer that question today, perhaps she could drop me a line.
Dawn Primarolo: As I understand it, the period was very short indeed. The role of Ministers is now to formalise the work that pre-dated the request for them formally to refer something to NICE. I was not personally involved in this case, but in others where I have been involved, we would be talking about an incredibly short period.
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