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What made Alexion look at paroxysmal nocturnal haemoglobinuria, which is so incredibly rare? I flashed Alexion up on Google a few moments ago, and as far as I could see it only produces that one drug and is desperately researching its use for asthma, and in transplantation and inflammatory disorders. Why did it start and come up with this remarkable drug that it describes on its website as the

In the 2005 Health Committee report into the pharmaceutical industry, we made it quite clear that we wanted the Government to direct, and have discussions with, the industry to include in its research rare diseases. With that report, we discovered that the Department of Health does not respond to a conclusion unless the word “recommendation” is in it. One of our conclusions read:

In fairness, there were some comments about that in the introduction to the Government’s response, although the Department did not pick out that particular conclusion. One comment read:

A document entitled, “Best Research for Best Health: a New National Health Research Strategy”, was published around the same time. I am sure that the Minister is not quite prepared for this line of questioning, but what progress has been made on the NHS contribution to health research?

On the pharmaceutical industry, the response stated:

The response went on to say that the Government were forming the Ministerial Industry Strategy Group to continue the dialogue between the Government and the industry. I would love to know if any updates are available on that.

How do we find the money to begin to afford all these expensive treatments? To me, the answer is obvious, but no one will accept it because nobody likes the dread word “rationing”. In a briefing for this debate, the Specialist Healthcare Alliance suggested that we use the money saved from medicines coming off patent to re-invest in new treatments, which the Department has started to do. Ages ago, it produced the paper, “Better Care, Better Value Indicators”, which I have mentioned umpteen times before, and which showed that if everyone prescribed generic statins the way that the best 25 per cent. of primary care trusts do, we would save £80 million a year. So the answers are there.

In its submission, Myeloma UK said:

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Finally, the British Journal of Healthcare Management, for which I have a great deal of time, popped across my desk this morning. I shall finish with a quote from Nick Bosanquet in an article about top-up fees, which I hope will be passed across the Minister’s desk as well. He said:

That is an excellent summary of the position.

[John Cummings in the Chair]

11.50 am

Mr. David Anderson (Blaydon) (Lab): It is a great privilege to work with you again, Mr. Cummings. A long time ago, we worked together in a very different place. I congratulate my hon. Friend the Member for Bristol, North-West (Dr. Naysmith) on securing the debate, and I assure those present, particularly Hansardstaff, that I shall do my best not to use words of more than three syllables.

I am not a health professional, as many colleagues present are. The hon. Member for Wyre Forest (Dr. Taylor) spoke about the Merck Manual; the only Merc I ever had was a 1990 230 estate, but that was an automatic, not a manual. My background is in coal mining, and I was once a care worker for elderly people, but I have spent a lifetime in a family that has been devastated by muscular dystrophy.

Within a month of coming to this place, I was asked whether I would be prepared to chair the all-party group for muscular dystrophy, and I was pleased to take up that opportunity. I want to put on record my thanks and the thanks of those involved with the parliamentary group, as well as campaigners on muscular dystrophy, for the great response that we have had so far from the Minister. She has shown real good will in trying to take forward the campaign with which we are involved. I thank her in particular for giving us access to the civil servants in the research department whom we met during the recess. They were very positive about their role in helping us to maximise opportunities to develop good-quality research.

I shall spoil the party a little bit now, though, by telling the Minister that I am going to write to her about an issue that has arisen as a result of those meetings. It is ludicrous that Government money that had been allocated to the development of drugs to help people with this disease has been classed as underspend because it has not been spent within a certain time scale, and will probably be clawed back. That money has been underspent not because people have not wanted to use it, but because the phasing of what they have been doing did not work as they thought it would. It is not rocket science, but it is research science. Surely, the essence of research is that things develop in a way that is uncertain. Things sometimes go much quicker than expected and sometimes much slower. That money is a relatively small amount in the Department’s global sum, and the
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fact that it has not been spent within the expected time scale should not be a way of getting money back into the Department. It should be kept by the groups doing the research.

I have received information from the Muscular Dystrophy Campaign that I want to take hon. Members through to inform them of the current situation. There are more than 60 types of muscular dystrophy and related neuromuscular conditions—rare conditions for which there is no cure. That shows the importance of the research work being done. It is estimated that such conditions affect more than 1,000 children and adults for every 1 million of the UK’s population, and conditions can be genetic or acquired. Some types, such as Duchenne’s, are aggressive, causing muscular deterioration and wasting. They are responsible for respiratory and cardiac problems and, sadly, result in premature death, particularly in young boys. Other conditions can cause lifelong disability. My sister was 53 when she died and my brother was 48. They had lifelong disabilities, but not very long lives.

The campaign invests about £3 million of its own money in research, care support services, muscular centres, development networks, and in sharing information and resources. It has pioneered research into treatments and cures for nearly 50 years, but it cannot do everything on its own. The House, the Department, the Government and the Minister all have a responsibility, and I know that the Minister takes her responsibility very seriously.

Last December, the campaign produced a report called “Building on the Foundations: Establishing a Specialist Neuromuscular Service across England”, which found classic disparities such as those that the hon. Member for Northavon (Steve Webb) mentioned. In the north of England, where we have a strong lead in muscular research, the average survival rate for patients with Duchenne’s muscular dystrophy is 30 years, whereas in the south-west it is, sadly, only 18 years. That is a huge difference in life expectancy. The report also found that two out of three primary care trusts do not support a muscle clinic for either adults or children, which means that many patients do not receive the special care that they need. It also found that the service is dependent on a handful of world-class specialists. What will we do when those people retire or move on to another area and there is no on left to come behind them? We must take control and embed what they are doing into a national structure.

Last month, the Muscular Dystrophy Campaign carried out the “State of the Nation” survey as part of its muscle week. The survey focused specifically on access to specialist services, quality of life and the impact of living with a rare disease. There were 1,000 respondents, of whom 50 per cent. said that their experience of the diagnosis process was either poor or very poor. The results showed that half of patients have not seen a physiotherapist and that half do not have access to a specialist neuromuscular consultant. The survey also found that 80 per cent. of patients do not visit a specialist centre or receive specialist care for their condition. The campaign believes that those problems can be put right, and we seek commitments from the Department on its recommendations. It would be great if the Minister said yes today, but I do not suppose that she has the authority to do so.

The campaign recommends that we should, as a matter of course, designate specialist muscular services within the Department of Health’s specialised services
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definition set, so that specialised commissioning groups can be set up across England. Each such group, and responsible bodies in Scotland, Wales and Northern Ireland, should follow the lead of the South West SCG and carry out a comprehensive review of the provision of specialist services. Let us know what is going on out there. We should also ensure that every person who is affected by muscular dystrophy has access to a care co-ordinator or key worker who can take a lead on their behalf with the care team and provide them with support, information and a regular review of their care plan. We need more. Far be it from me to fall out with my hon. Friend the Member for Norwich, North (Dr. Gibson), but the truth is this: socialism might put this matter right, but whether there is socialism, capitalism, a laissez-faire approach or a middle-of-the-road system, those people are not being looked after properly, and we need a system that does look after them properly.

11.57 am

Dr. John Pugh (Southport) (LD): I congratulate the hon. Member for Bristol, North-West (Dr. Naysmith) on his introduction to the debate. Indeed, all hon. Members have spoken in a well-informed and, at times, moving way. I apologise for the manner of my delivery, as I have a heavy cold, which, fortunately, is neither rare nor complex.

It is a principle of NHS care that care should depend on the severity of a condition rather than its rarity. No one should be discriminated against simply because their complaint is rare or complex. In reality, rare conditions have fewer lobbyists—there are many in this Chamber, but not so many in the outside world. Rare conditions are less well understood, are generally more expensive to treat and interest the world of pharmacy and commercial medicine less because they do not hold the prospect of such lucrative gain. Often, the therapies and treatments for such conditions are less certain and are harder to test.

In such a world of limited resources—the hon. Member for Wyre Forest (Dr. Taylor) talked about rationing, as he does in many debates—there is a utilitarian argument that would lead to the deprioritisation of such illnesses and complaints. However, I do not think that the NHS was ever meant to be run along utilitarian principles. To address the natural effects of resource pressure, the Government have wisely allocated the commissioning of services for rarer and complex conditions to special commissioning groups, using pools and top-sliced funds from PCTs. That follows the Carter review’s recommendations, which I think everyone in the Chamber broadly supports.

We also have a national commissioning body to deal with those things that cannot even be financed on a regional basis. That has a sound objective: to ensure an even pattern of commissioning, which we clearly do not seem to have at the moment, given hon. Members’ contributions. I support that strategy, but it does not quite get us out of the woods, for two reasons. First, there will be an understandable tension over budgets between the regional commissioning bodies and the individual PCTs, and I have certainly seen PCT minutes that express anxiety about what the specialist commissioning groups might do. Secondly, specialist commissioning groups and PCTs might have different expectations of each other, as patients often access services that are
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commissioned by both—physiotherapy is a prime example, particularly for patients with muscular dystrophy. We must admit that, even with regional commissioning groups on a specialist basis, they will not all follow the same pattern of commissioning and are not bound by an absolutely fixed list, although there are definitions on what counts as specialist commissioning.

The postcode lottery will not be absolutely abolished by the Government’s proposals, but I support them and think that they will make significant progress. I am encouraged by the reports I hear from the north-west region, where the specialist commissioning organisation has a budget that is almost as big as that of the largest PCT and is making appreciable strides, not only in producing new facilities and arrangements, but in giving positive guidance with regard to therapies.

The issue of drugs is the most acute issue that has been raised today, particularly the orphan and ultra-orphan drugs. We ought not underestimate the fact that controlling the drug price is an important issue for PCTs in delivering value for money across the piece. I am familiar with the National Audit Office report on that, which pointed to wide disparities in the efficiency of PCTs in using their drugs budget. I would like to quote from Sophie Christie, the chief executive of Birmingham East and North PCT, whose views on that issue were included in the Library’s debate pack. She puts it rather nicely, and certainly better than I could:

a rather good expression—

Clearly, the procedure currently being followed is unsatisfactory. Hon. Members have mentioned the exceptional cases procedure, and the hon. Member for Bristol, North-West made absolutely clear that it was never intended to do the job. My hon. Friend the Member for Northavon (Steve Webb) made it absolutely clear that, as it is currently being conducted, it is a hopelessly confused process.

Even using guidance from the National Institute for Health and Clinical Excellence does not resolve the issue because it can always be argued that NICE has neither sufficient data on those rare conditions, nor the resources and time to test within a reasonable timescale. In any case, hon. Members have consistently been told by Ministers over the years that the absence of NICE approval is not a trump card for the PCT. It is a difficult and fraught area, and the specialist and exceptional nature of orphan drugs is probably the reason why there is special legislation from the EU and the USA on that subject. It is a profoundly difficult area for PCTs, which have to made a profoundly difficult judgment call. That is why the help of the specialist commissioning groups can be so important in producing the standardisation that hon. Members would like to see.

However, there is also a role for the charity and voluntary sector, which is often the prime advocate of better provision for people with all kinds of conditions, including rare ones. The sector needs to be forceful and fair: fair in its demands and expectation and forceful in
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advocating what is reasonable. Its role is so crucial to the piece, both in fighting battles on behalf of patients and educating the wider NHS. That applies not only to the most critical and life-threatening conditions, which have largely been dealt with in the debate, but to less-threatening conditions. I was recently approached by someone in my constituency who suffered from a disease called Fibromyalgia, which had to be explained to me. That person found that there was wholesale ignorance of the disease in all parts of the NHS, and many parts had been accessed about the condition. There was a real need for the voluntary sector to fill the vacuum in educating the professionals.

12.6 pm

Anne Milton (Guildford) (Con): It is a pleasure to serve under your chairmanship, Mr. Cummings, and I congratulate the hon. Member for Bristol, North-West (Dr. Naysmith) on securing the debate.

Although the hon. Member for Wyre Forest (Dr. Taylor) attempted to give a definition of a rare and complex disease by stating that a GP would see one example per year, there are a number of definitions. There is an official definition, but the prevalence criteria used in national commissioning is one per 50,000. Interestingly, that varies from the EU definition of fewer than five per 10,000. Many diseases with a prevalence of fewer than five per 10,000 do not require special arrangements for health services to be commissioned.

None the less, there are many thousands of different diseases, many of which are suffered by only a few hundred people in the UK, and even fewer than that in some instances. Collectively, however, the numbers can be much higher. For example, recent research shows that between 30 and 50 per cent. of all cancer cases could be classified as rare as they fall outside the more common and highly publicised cancers such as colon, breast, lung, prostrate and bowel cancer, which we hear about frequently in the press.

One prominent feature that I do not think has been highlighted strongly enough in the debate is that those suffering from rare and complex diseases often feel a tremendous sense of isolation—more so than if they were suffering from a more common disease. There might be few survivors and no available support networks, the GP might know little about the condition and it is often difficult to get accurate information about the prognosis or effective treatment. Of course, availability to much wider networks on the internet has made a significant impact on that problem, but many of those people do not necessarily have access to the internet and might not be comfortable joining support networks in that way. The isolation, the feeling of fear and the lack of information are significant factors.

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