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20 Nov 2001 : Column 44WH


12.30 pm

Mr. Gary Streeter (South-West Devon): I am pleased to be able to discuss the plight of haemophiliacs in the west country, particularly those who suffer from hepatitis C. Many right hon. and hon. Members have taken part in a long campaign on the issue. As a Member of Parliament for the past nine years I have also been aware of the excellent and important campaign by the Haemophilia Society. I have been in correspondence with Ministers in the Department of Health about the problems.

It was, however, in summer this year that the campaign became real for me. I was contacted, for the second time I think, by Mr. Richard Waring, who lives in Staddiscombe in my constituency. I went to see him in July and found out more about his background and what he was going through as a haemophiliac who, sadly, has hepatitis C. Richard Waring is a good, decent man. He is a committed family man, happily married to Jacqueline with a lovely daughter called Charlotte. He lives in a very nice part of my constituency—although, of course, all my constituency is wonderful.

Richard Waring had the grave misfortune to be born haemophiliac. I used to think that, if haemophiliacs were cut, it would not be possible to stop their bleeding. Of course, that can happen, but the problem primarily concerns internal bleeding, particularly internal bleeding into joints. I am no medical expert but to me that sounds painful and uncomfortable. It is not a problem that I would want. Naturally, as a result of internal bleeding, many transfusions are necessary. That is where the problems began for Mr. Waring.

Mr. Waring was born a haemophiliac. It was not his choice or his fault. Because of regular blood transfusions he had the additional, secondary misfortune in 1985 to contract hepatitis C through one of the many instances of contamination of blood products in the 1970s and 1980s. The blood was provided by the national health service, and through no fault of their own about 5,000 haemophiliacs were contaminated. Hepatitis C is a horrible disease. It attacks the liver. It is potentially life threatening. It is extremely debilitating and painful and causes consistent tiredness. That terrible disease has greatly affected the lives of Mr. Richard Waring and many other people in the west country who suffer from it.

I sought the debate because I was not only informed, but moved by Mr. Waring's plight. I believe that a real injustice is being done to people like him. I accept that it is not the present Government's fault: this debate has been going on a long time. However, it lies in their hands to remedy the injustice. My reason for introducing a debate on a matter that has been the subject of plenty of debates over the years is to ask the Government to think again.

Living in the west country is terrific, but it is not so great for haemophiliacs suffering from hepatitis C. There are four reasons for that. First, we do not have a comprehensive care centre in the west country. The nearest such centres that haemophiliacs in Mr. Waring's position can use are at Basingstoke and Oxford. That is at least three hours' travelling time. Many people in London confuse Plymouth with

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Portsmouth. I sometimes drive to Plymouth via the M3 and A303, and every time I reach the edge of London I smile at the sign that says "Portsmouth 65 miles", because I know that I have another 220 miles to travel. I wonder how people can confuse Plymouth and Portsmouth, but they do, and they fail to realise how far Plymouth is from London and Bristol—from the centre of the country, in other words. It is not unusual to have to travel three or four hours to get somewhere from Plymouth, which is the last thing people need if they suffer from a debilitating disease and have to go for treatment.

There is no comprehensive care centre in the west country, but the Trent region has four such centres, based in the west midlands and the north-west and possibly even serving your constituency, Mr. Winterton. The issue was debated on 9 November last year with the Minister's predecessor, the right hon. Member for Southampton, Itchen (Mr. Denham), who said that he hoped that the regional commissioning group would reconsider the provision of a comprehensive care centre in the west country. My first question to the Minister is, has any progress been made on that?

The then Minister for Health acknowledged that, although no comprehensive care centre existed in the west country, hospitals at Bristol and Southampton can provide some specialist services. That is good, but not good enough. Bristol is two hours away from Plymouth and even further away from Cornwall, and getting to Southampton is also difficult. This is an important point because those centres are the places to go for routine and emergency medical treatment for people suffering from haemophilia, for drug therapy, physiotherapy and counselling, and for genetic and specialised services for HIV and hepatitis sufferers. The west country is not a good place to live if one has hepatitis C and is a haemophiliac. We need better facilities.

Secondly, the west country does not receive recombinant factor 8 on the national health service as do other parts of the United Kingdom. Recombinant factor 8, as I discovered in the summer, is a blood clotting agent prescribed on the NHS in some parts of the United Kingdom. If Mr. Waring lived in Scotland, Wales or Northern Ireland, or elsewhere in England, he would get it free, but he does not get it free in the west country. How can that be justified?

I can cite an absurd example from the north-west. Welsh health trusts have decided that they will fund recombinant factor 8, which means that people who live to the west or south of Liverpool and happen to live in Wales can go to specialist hospitals in Liverpool and receive that product free on the national health service, whereas people living to the north or east of the city who go to the same hospital and have the same disease cannot get those blood clotting agents on the NHS. That is an extraordinary situation: it is a postcode lottery of the first order.

On 9 November 2000, the then Minister for Health said that

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If someone is born with a serious complaint and is infected with contaminated blood products provided by the national health service, is that person not entitled to the best support and treatment that we can give? Mr. Waring is in no doubt as to the superior quality of recombinant blood agents, and the Haemophilia Society has no doubt that they are superior. The Government themselves seem to have accepted that, because they decided that from April 1998 all 16-year-old haemophiliacs must be provided with recombinant factor 8 and that from April 1999 they must be provided with factor 9, which is another recombinant blood agent. If the Government are making a tacit admission that those agents are superior because they are safer, why cannot those drugs be made available to everyone?

Mr. Waring already has hepatitis C, and he might get more diseases, such as HIV or new variant Creutzfeldt-Jakob disease, through future blood transfusions, so we should give him the best and safest products. As I have mentioned, some national health service trusts in England already do that, but sadly, not in the west country. For all its beauty and its outstanding Members of Parliament, the west country is not a good place to live if one is a haemophiliac suffering from hepatitis C. In a written answer on 10 May 2001, Lord Hunt of Kings Heath said that the Department was carefully considering the case for extending provision of re-clotting factors to all haemophiliac patients in England. Has any progress been made on that issue?

My third point is brief. The Haemophilia Society is calling for a public inquiry into how, in the 1970s and 1980s, so many people were infected with contaminated blood products. Given the recent scares over new variant CJD, people who are vulnerable to contamination from blood transfusions are entitled to know that we have got to the bottom of what went wrong and that every conceivable lesson has been learnt and every possible safeguard put in place. Last year, the then Minister said that there would be no public inquiry. I understand that, but the Government should think again. I do not want to be too controversial, but if we can hold a public inquiry into the Bloody Sunday incident from 25 years ago, is it really too late to hold an inquiry into this silent scandal, which affected so many lives?

My fourth point about compensation is the most important of all. Richard Waring accepts that nothing can be done to undo the past, but the impact on his life of his unwilling contamination has been very great. It has had a serious impact on his family life and his potential to earn a reasonable income and live the kind of life to which most of us aspire. Is it really too much to ask the Government to introduce a compensation package for the relatively small number of people who are suffering in that way? When the matter was raised in the House on 9 November 2000, the then Minister said:

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As a lawyer, I recognise that. The relation between negligence and compensation in such action is well established. However, there are more and more exceptions to that rule. Notably, in 1987 the then Government decided that they would compensate people infected with HIV in very similar circumstances, and established the Macfarlane Trust to do that. Perhaps the Minister will correct me if I am wrong, but I believe that the Government of the day did not accept legal responsibility for the fact that people had contracted HIV through blood transfusions, but seemed to accept that they had a moral responsibility to compensate people who, through no fault of their own, were given HIV. The problem may not have been the fault of the NHS—we have learned a lot more about screening blood products since then—but people suffered as a result.

If it was right to compensate HIV sufferers, why is it not right to provide a similar package for people who contracted hepatitis C in exactly the same way? Will the Minister deal specifically with that question? What possible justification can there be for treating HIV sufferers differently from those hepatitis C sufferers, given that the disease was contracted in just the same way, and the impact on a person's life can be just as great? Last week, I met some haemophiliacs at the House of Commons, as the Minister may have done. One of them told me that it would have been better if he had contracted HIV and not hepatitis C, because he would have had some financial help. It is terrible to hear someone say that. His life is in a mess as a result of contracting hepatitis C.

The Government were right in 1987 to provide financial help for HIV sufferers who had contracted the disease through blood transfusions, and they are right to talk about compensation for sufferers of new variant CJD who have acquired the disease in a similar way. Why cannot we do the same for sufferers of hepatitis C? If newspaper reports are to be believed, the Government are now considering compensation for families who witnessed the terrible events of 11 September, and who watched the planes knowing that members of their families worked in those buildings. I realise the impact that that would have had on them: one can never get over something like that. However, if the Government are prepared to consider compensation in a situation that was not their fault, why cannot they think again about the principles that apply to sufferers of hepatitis C? After all, negligence is not at issue, and litigation does not apply. Sufferers of hepatitis C are blameless. I sometimes think that we do too much for too many people who do not deserve support. Some groups of people, for whatever reason, have been overlooked. They deserve more support than they get.

It would be a popular decision if the Government were to reconsider the issue. That would be good news, not bad news. I have a petition signed by several hundred people in my constituency, who happen to know of the case and who feel strongly that the Government should put their hands in all our pockets to give more support to those who suffer in this way.

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The Government have resisted claims for compensation before, and I understand that. However, the case is compelling and, inevitably, the Government will one day have to address the issue of compensation. I ask the Minister to respond as positively as she can and to think about the justice of the case. She must take whatever steps are necessary to put in place better local facilities and end the postcode lottery. She must also understand the need for an inquiry.

I am sure that the Minister's speech will be excellent and well worth hearing. However, whatever else she says, I hope that she will agree to think again about the situation of Mr. Waring and others who have suffered this injustice. I realise that Governments make decisions and run along the same track for years and years, but in this case a paradigm shift is required. I ask the Minister to think again and to come back with the welcome news for these 4,800 sufferers that the Government have seen the justice of their cause, believe that they deserve compensation and are willing to put a package in place.

12.48 pm

The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears): I thank the hon. Member for South-West Devon (Mr. Streeter) for raising this matter, and I pay tribute to him for the committed and passionate way in which he has represented the interests not only of his constituent, Mr. Waring, but of the wider group of people who, unfortunately and tragically, are in similar circumstances.

I hope to be able to deal with all the issues raised by the hon. Gentleman. He may have anticipated some of my comments, and they may not take him as far as he would like to go, but I shall deal with his points separately and in some detail, so that he will understand the Government's position.

Some 7,000 people with inherited bleeding disorders are registered with haemophilia centres in the United Kingdom. Those disorders include haemophilia A, which affects one in 10,000 men, the rarer haemophilia B, which affects one in 50,000 men, and the milder von Willebrand's disease, which affects one in 10,000 men and women. Haemophilia is a lifelong, painful and debilitating condition. However, modern treatments are effective and many patients can look forward to a good quality of life. Sadly, during the late 1970s and early 1980s, as the hon. Gentleman said, the majority of regularly treated patients with haemophilia were infected with HIV or hepatitis C before it became possible to remove those viruses from clotting factors made from human plasma. As a result, about 3,000 haemophiliacs are estimated to be living with hepatitis C, 500 of whom are also infected with HIV, and most of those with HIV are also infected with hepatitis C. That co-infection may accelerate the clinical course of both disorders as well as making the haemophilia more difficult to manage. People in those circumstances face considerable medical and psychological problems over and above the ordinary problems faced by people with haemophilia.

The Government have enormous sympathy for haemophiliacs in that situation, and it is essential that the NHS is properly geared to delivering the full range of clinical and support services needed by people with haemophilia and treatment-acquired infections. Those

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include routine and emergency medical treatments, drug therapies, physiotherapy, counselling, which is crucial in such circumstances, genetic services and specialised services for HIV and hepatitis. As the hon. Gentleman said, the key need is for a range of high-quality services. He is right that specialist services are provided by a network of comprehensive care centres, but there are a range of smaller haemophilia centres that help to support the existing comprehensive care centres.

All haemophilia patients who need the care provided by a comprehensive care centre should have access to one. People, especially from the south-west, often have to travel a long way to gain access to the wide range of comprehensive services. Many of the hon. Gentleman's constituents have to travel to London or Oxford for that care. He rightly drew attention to the need to ensure that there is equity in the service, and that people who live in far-flung, disparate rural areas have access to as much comprehensive care as we can provide.

As the Minister with responsibility for the south-west region, I took time out in the summer to visit Plymouth, Exeter and Cornwall, and I appreciate the distances that people living in that part of the country have to travel. There is a tension between excellence and specialised services and local access throughout the country, but the problem is acute in the south-west region, which needs special attention. The Haemophilia Society has been drawing up a national service specification to inform the Government of the range of facilities that should be available to people with haemophilia and other acquired infections. The work of the Haemophilia Alliance, which comprises the Haemophilia Society and the UK Haemophilia Centre Doctors Organisation, is a sign of progress. People with these conditions and their medical specialists are drawing up the service specification that informs Government policy on how to put it in place.

The hon. Gentleman highlighted specialist service commissioning. The comprehensive care facilities offer extremely specialist services, and now that responsibility for commissioning is to be devolved to primary care trusts, it is necessary to ensure that they have sufficient expertise and guidance to undertake regional specialist commissioning of those highly specialised services. The issue must be kept at the top of their agenda. The development of the national service specification will ensure that the commissioning process is informed by a depth of knowledge about what the services should be like and where they should be located.

There must be enough patients to justify the provision of a comprehensive care centre in an area, and a balance has to be struck in ensuring that everyone has reasonable geographical access. However, a plan is being developed in the south-west for several haemophilia support centres rather than one, and for specialist facilities to be available in a range of centres so that within the region there will be access to the full range of facilities normally found in a comprehensive care centre. Rather than drawing provision into one geographical centre, each centre could specialise in a service. That may be a way of overcoming the problem of insufficient patients to merit a comprehensive care centre.

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We must be more innovative, flexible and creative in our development of services so that they are appropriate to the needs of people in areas such as the south-west. That theme is emerging not just in haemophilia services, but in the full range of NHS services. An attempt is being made to meet the requirements of disparate areas, where transport is a real problem, by departing from set models of care and taking more flexible and innovative approaches—what might be termed hub and spoke arrangements, whereby spokes radiate out from the hub into the community, allowing people access to facilities.

On recombinant clotting factors, as the hon. Gentleman said, synthetic clotting factors have been developed in the past 10 years. The Haemophilia Society and British haemophilia doctors have actively pressed for factor 8 and factor 9 to be the treatment of choice for people with haemophilia. I understand why people want that. Recombinant products are regarded as free from the risk of transmission of as yet unknown viruses and from the theoretical risk of variant CJD. People with haemophilia are very worried about the likelihood of future risks and the incidence of HIV and hepatitis C.

The unavailability of recombinant factor products is not a matter simply of funding. Worryingly, there is a world shortage of those products. Along with the medical profession, we have been directing our energies to the management of existing products so that they are given to the people most suited to receive them. That was one of the reasons why children under 16 and new haemophiliacs were priorities for recombinant products. We are actively considering whether recombinant clotting factors should be the treatment of choice for all haemophiliacs, although that is not possible at the moment because of the world shortage, as a consequence of which some children have been temporarily switched back to the plasma-derived clotting factors. We are keen to get children back on to recombinant factors as a priority as soon as the supply of those products improves.

I am afraid that my response on compensation will be disappointing. As the hon. Gentleman said, successive Governments have considered the matter and established the principle that compensation payments are made when the NHS has done something wrong. Whether such actions fit the technical definition of negligence, the principle is that compensation is paid only when the NHS is at fault. The hon. Gentleman highlighted the issues of HIV and CJD compensation. Those cases were truly exceptional and have been considered in depth. In the late 1980s, HIV had a vast and dramatic effect: it carried huge stigma, no treatment was available and sufferers almost invariably died of AIDS-related diseases. The prognosis for people with HIV at that time was virtually nil. The circumstances were therefore exceptional, and it was in that context that the Macfarlane Trust was established and payments made. The circumstances of and background to variant CJD are also exceptional. Such circumstances do not change our long-standing policy on compensation for injuries caused by the NHS: the hon. Gentleman said that he understood the logic and reasoning behind that policy. I understand his strength of feeling on the matter, but I cannot say that there will be any change in the position.

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The hon. Gentleman requested a public inquiry. I understand the strength of feeling of people infected with hepatitis C, who want to know how and why it happened. We have given careful consideration to the issue of a public inquiry, and it has been raised at numerous meetings and in correspondence. We have explored the possibility, but I am not in a position to promise a public inquiry into this matter. However, I believe that it is vital that the health services available to those with hepatitis C, HIV or haemophilia are of the highest possible quality. I entirely understand the hon. Gentleman's wish to improve those services in his region. We must ensure that combination therapy is available to sufferers, that there is good local specialist commissioning and that those health services are improved.

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