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Lord Astor of Hever: My Lords, before the noble Lord sits down, he mentioned a letter he received from the noble Lord, Lord Owen. Would it be possible for myself and other speakers tonight to have sight of that letter?
Lord Morris of Manchester: My Lords, I shall be pleased to make the letter of the noble Lord, Lord Owen, available to the noble Lord, Lord Astor, and also to my noble friend Lord Filkin.
7.43 p.m.
Baroness Gardner of Parkes: My Lords, I have given notice that I wish to speak in the gap. As is the tradition, I shall be brief. I arrived late today and when I rang to put my name down for the debate I found that I had just missed the deadline. When I saw that one of the speakers had dropped out of the debate I realised that it was a good opportunity for me to say a few words.
There is very little I can add to what has been said by the noble Lord, Lord Morris; he has covered the issue very thoroughly. One point that he did not raise is that if you have hepatitis and haemophilia, there is no way that you can obtain life insurance. This is highly relevant and is particularly related to the title of his unstarred Question, which refers to the dependants of those who have died.
Haemophilia is extremely distressing, not only to those who suffer from it but to their families. Hepatitis C is also a terrible burden. I support the view of the noble Lord, Lord Morris, that recombinant Factor H should be available for everyone. That is particularly desirable if there is a risk of BSE—which becomes new variant CJD in humans—being transmitted through blood transfusions and blood products. At the moment, no one seems to know what is the position in that regard, but the recombinant factor, which is totally synthetic, would mean that there would be no risk whatever of being infected. That is a very important point.
I shall not take up any more of your Lordships' time. I merely wish to indicate my strong support for the unstarred Question tabled by the noble Lord, Lord Morris.
7.45 p.m.
Lord Addington: My Lords, the noble Lord, Lord Morris, has been a doughty warrior for those who suffer from haemophilia. This subject has been discussed before and my noble friend Lord Clement-Jones, who is unable to be here due to a severe but not life-threatening domestic crisis, and I have both spoken on it a number of times.
People with haemophilia have a potentially life-threatening disability which restricts their life. Their history is basically tied up with the fact that suddenly they were led to believe that there was an answer to haemophilia which would enable them to lead normal lives. That answer—clotting agents—turned out to be, effectively, a death sentence or at least placed a great restriction on their lives. Two groups of infection arose—one of which has been dealt with and one of which has not. That is roughly what happened. We then get into the morass of why one group of sufferers is treated differently from the other.
There are definitions of what is "legal responsibility" and so on, but I am sure that a good lawyer could dance circles around them. However, we are not in the job of interpreting the law, we are in the job of making it. We try to give guidance to lawyers as to what they should do.
If the Government provided treatment for a group of people who needed it desperately and offered them the chance of a whole life as opposed to a part life and a life of restriction, and that treatment damaged people in that group in two different ways, there is something fundamentally wrong if only one part of that group receives compensation.
The noble Lord, Lord Morris, has brought forward more information today—I know that he will ensure that we all have copies of the letter of the noble Lord, Lord Owen—but it merely increases the significance of certain actions. However, one fact is absolutely clear: lives have been affected and lives have been foreshortened.
There is a further irony in that new drug treatments mean that someone with HIV stands a better chance of surviving, in better shape, than someone with hepatitis C.
A series of issues come together to make this case more solid every time we discuss it. The Government sit back and adopt a legal defence that states that at a certain time they felt that one form of infection was caused through negligence while they could not possibly consider the other form of infection. The notes suggest that artificial factors should have been used at certain points, but, whatever happens, there is no easy answer as to what should be the cut-off point. If there is, the Government should do something about it. I would never dream of suggesting what level of compensation should be paid. Indeed, given the passage of time, I would suggest that different calculations are probably necessary for the different situations.
But a recognition that the Government have disadvantaged one group against another—perhaps, "a subsection of one main group" is a better way of
putting it—and then not treated those subsections in the same way lies at the heart of the issue. We have two groups of people who have acquired different life-threatening diseases through the same treatment. It is not their fault; it is the fault of the treatment they were given. They were told that the treatment would make them better and deal with the underlying condition. Given that information, they would have been insane to refuse treatment. Then, having been damaged, one of the groups does not receive support. There is something wrong about that.The Government can dig themselves into a certain legal position. However, unless they are prepared to address the fact that there is something very wrong at a basic level, this problem will not go away. Unless they give a better answer—unless they say, "Yes, we will deal with the underlying problem, not put up legal defences"—they will be hearing a great deal more about the issue for a great deal longer.
7.50 p.m.
Lord Astor of Hever: My Lords, I begin by paying tribute to the noble Lord, Lord Morris of Manchester, for once again bringing before the House the important subject of those people with haemophilia who were infected with hepatitis C by contaminated NHS blood products. The Haemophilia Society is fortunate to have the noble Lord as its president. Very few national charities or patient representative groups can have such a committed president working so tirelessly and effectively for their cause.
I pay tribute also to the Haemophilia Society for its excellent campaigning and the support work that it does, not only for people with haemophilia, but also for their families and the dependants of those who have died.
I also mention the work of the Haemophilia Alliance, which comprises the Haemophilia Society and the UK Haemophilia Centre Doctors Organisation. They are drawing up the service specification of care for people with haemophilia and related bleeding disorders.
The noble Lord, Lord Morris, made the point that, for the third time in a year, the Government have failed to put up a health Minister for this debate. I have the greatest respect for the noble Lord, Lord Filkin, who always answers my questions effectively. However, I am disappointed that the noble Lord, Lord Hunt, is not here in person to demonstrate the Government's real concern for this group of people who, unfortunately and tragically, received infected blood products before the hepatitis C infection could be removed.
In addition to the inadequate support services for managing HCV, and the poor management and care after diagnosis, the noble Lord, Lord Morris, set out some of the problems that such people face financially and emotionally. It is quite wrong that they should experience this social stigma or discrimination, wherever it occurs. We on these Benches feel a great deal of sympathy for them.
In preparing for this debate, I went back to the debate introduced last year by the noble Lord, Lord Morris, to look at the issues that we raised at that time. On the subject of comprehensive care centres, which provide specialised care and support for patients and their families, some progress does seem to have been made. Postcode prescribing is less the case this year, but there are still some glaring gaps.
In the debate last year, I raised my concern that there was not one CCC in the South West. For haemophiliacs living in Cornwall or Devon the nearest centre was in Basingstoke, in Hampshire, 237 miles from Penzance. That situation has not changed, as was highlighted by my honourable friend the Member for South West Devon in a Westminster Hall debate last November. I understand that the regional commission group is considering the provision of a CCC in the West Country. I should be grateful if the Minister, in replying, could give some hope to the haemophiliacs living there, given the very real problems that they face.
Last year, I asked about the Hepatitis C Expert Steering Committee which the Government were setting up to produce a consultation document. This was to consider the wide range of specialist services which treat, support and care for people with hepatitis C. This consultation document, Children in Need and Blood-Borne Viruses: HIV and Hepatitis" was published last month. Unfortunately, it was a missed opportunity. It addressed children only, not adults. All children are treated with recombinant up to the age of 16, so the issue of adults being infected with blood-borne viruses was not addressed.
I also raised the issue of there being no nation- wide system to identify and monitor people with haemophilia infected with HCV and asked the Government what plans they had to ensure that such a system was created. Unfortunately, no progress has been made on central identification. Will the Minister tell the House what intentions the Government have on the issue?
I raised the important point that the majority of health authorities either did not provide treatment for HCV, or did so only on a limited and inadequate scale. Once again, no progress has been made, although we hold out some hope that, following the reforms to NICE, this wrong will be righted.
In last year's debate, the noble Lord, Lord Clement-Jones—who I am sorry to see was unable to take part in the debate—pointed out the fears that the Government were putting haemophiliacs in England at risk from variant CJD. That situation has also not changed. Indeed, as the noble Lord, Lord Morris, pointed out, only 43 per cent of patients are receiving the safer, but more expensive, alternative to the blood plasma which they have been warned may contain vCJD. Indeed, many haemophiliacs are refusing blood transfusions because of fear of contracting vCJD. As the noble Lord, Lord Morris, said, some have resorted to treatment strikes, even though they could die without regular transfusions. In England, unless they
are new patients, or under 16, haemophiliacs must use blood products derived from human blood, with all the risks that this might entail; whereas sufferers in Scotland, Wales and Northern Ireland are given the safe, genetically-produced recombinant Factor 8. That is indeed postcode care for haemophiliacs.Last year, I cited the absurd example from the North West. The policy adopted by the NHS commissioners in Wales means that all haemophiliacs living in North Wales are entitled to receive recombinant Factor 8 irrespective of age, postal code or viral status, and attend the Manchester or Liverpool centres. However, many people living in Manchester, Liverpool and the surrounding areas do not have the same rights and benefits. That situation has not changed.
If someone is infected with contaminated blood products provided by the NHS, surely that person is entitled to the best support and treatment. The Haemophilia Society is in no doubt as to the superior quality of recombinant blood agents.
In a Written Answer last year, the noble Lord, Lord Hunt, said that his 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 this issue? What reason is there for further denying to adult haemophilia sufferers in England the safer recombinant clotting factors? Was the decision to withhold this treatment taken on financial grounds?
In the Westminster Hall debate on 20th November, the Minister said that there was a world shortage of recombinant Factors 8 and 9. However, according to an article in Haemophilia World, supply to the UK is available in sufficient quantities. Moreover, the noble Lord, Lord Hunt, admitted, in an exchange with the noble Lord, Lord Turnberg, that that shortage has now eased. According to the Government, the additional cost of making recombinant treatment available to all haemophiliacs in England would be in the region of £50 million a year. Can the Minister enlighten the House on whether recombinant will be provided to all, regardless of where they live or their age?
Last year, I raised the issue of the lack of welfare support for many haemophilia sufferers. Again, nothing has changed. It would be helpful to have some reassurance from the Minister that the problem will be looked at.
The need for more funding for research was also raised. Progress is being made slowly, but it is too slow for those infected. Perhaps the Minister can touch briefly on funding for research when he winds up.
Finally, in a Westminster Hall debate on 14th November last year, the health Minister John Hutton announced the Government's intention to reform the system for dealing with clinical negligence claims, with a White Paper due "early next year". As it is now "early next year", can the Minister tell the House when it might be forthcoming?
8.1 p.m.
Lord Filkin: My Lords, I start my response to this important debate by marking the contribution of the noble Lord, Lord Morris, on the issue over many years. By my count, over the past four years there have been four significant debates in the House on the subject and 45 PQs—although my arithmetic could be faulty. The fact that the Government do not always agree with the noble Lord should not detract from the respect that we hold for his campaigning for this group of people.
I was slightly saddened by the noble Lord's remarks about my noble friend Lord Hunt. I know—and I know that the noble Lord, Lord Morris, knows—that my noble friend is one of the most committed and principled Ministers of health that anyone could hope to find. From several conversations that I have had with him, I know that he is concerned about the issue and agonises about it. I assure the House that his absence today is certainly not caused by any lack of interest or concern. Any implication that might have been inadvertently carried is misplaced.
All noble Lords who have spoken have raised some important issues. Haemophilia is a lifelong, painful and debilitating condition, but modern treatment can be very effective. It is not effective for everyone, but many patients look forward to an excellent quality of life. Medical science has transformed the situation over the past 30 years.
One of those changes came in the 1970s, when it was learned how blood plasma products could provide some effective treatment for haemophiliacs in ways that had not been possible before. Sadly, as we know, during that period the majority of regularly treated patients with haemophilia were unfortunately infected with HIV or hepatitis C, or possibly both. As a result, around 3,000 people with haemophilia are now estimated to be living with hepatitis C, 500 of whom are also infected with HIV. We all recognise that they therefore face considerable medical and psychological problems over and above those faced ordinarily by people with haemophilia.
Across the Chamber—and, clearly, within government—there is considerable sympathy for people with haemophilia in this situation. As the noble Lord, Lord Astor, said, it is essential that the NHS is properly geared up to deliver the full range of clinical and support services to help them, as far as possible, to cope with those afflictions. That includes providing routine and emergency medical treatment, drug therapies, physiotherapy, counselling and genetic services and specialised services for HIV and hepatitis.
The treatment and care of haemophilia patients is provided by a network of comprehensive care centres and smaller haemophilia centres. Significant progress has been made in the quality of care over the past 10 years or so. CCCs provide specialised care and support for patients and their families, delivered by multi-disciplinary teams. I shall deal later with the question raised by the noble Lord, Lord Astor, about the South West. All haemophilia patients who need that level of
support should have access to the facilities of a comprehensive care centre, although it may not be geographically as close as some would desire.The Government are also looking to develop a national service specification to try to ensure the highest possible standards for care. The Haemophilia Alliance, which includes the Haemophilia Society and the UK Haemophilia Centre Doctors Organisation, has produced its proposed national service specification, which outlines the key components of a high quality haemophilia service, whether it is provided in large CCCs or smaller haemophilia centres. The specification builds on the considerable expertise of the Haemophilia Alliance in delivering multi-disciplinary comprehensive patient care. The Government are determined to ensure that people with haemophilia are increasingly well cared for in the NHS, supported in their communities and more fully informed about how best to look after their health. We have welcomed that model service specification, which sets out clear standards of care for patients with inherited bleeding disorders. NHS commissioners of haemophilia services should find the document a valuable resource when planning and developing services for patients.
The treatment of hepatitis C has improved markedly over recent years. NICE assessed the use of a drug combination therapy of ribavirin and interferon for treating hepatitis C and published its recommendations in October 2000. This therapy has been shown to be twice as effective as any previous treatment. NICE's recommendations provide clear and authoritative advice for clinicians and healthcare providers and should help to ensure that patients get effective progress.
The thrust of the Government's position—as I am sure the House will expect—is that we do not believe that there are grounds for changing our position on compensation. Nevertheless, the focus has to be on trying to improve the quality of care that is offered. I shall briefly illustrate a number of facts—which I hope are accepted—about care and prognosis. It would be a mistake to create an impression that anyone unfortunate enough to have haemophilia and hepatitis C would inevitably die earlier than might otherwise be the case. The majority of patients who acquire hepatitis C will live out their normal life span. Hepatitis C infection is cleared in about 20 per cent of those infected, but it persists in about 80 per cent to become chronic infection. Most of those 80 per cent with chronic infection will have only mild liver damage and many will have no obvious symptoms. However, about 20 per cent of patients with chronic infection develop cirrhosis after 20 or 30 years. Out of 100 people exposed to hepatitis C, 20 would clear the virus within two to six months and 80 would develop it. Of those 80, 20 would never develop liver damage and 60 would develop some level of long-term symptoms. Of those 60, 24 would clear it fully and 16 would develop cirrhosis of the liver over 20 years.
None of that is to imply that this is a happy picture. Both having those diseases and undergoing the treatment regimes are distressing and painful for
patients and their families. However, the figures show that the picture is not as bleak as might sometimes be imagined from some of our discussions. The thrust has to be to try to improve the prognosis for people who have been unfortunate enough to be afflicted in these ways.On a national strategy to deal with hepatitis C, the noble Lord, Lord Astor of Hever, signalled the importance of high standards of medical and social care being applied consistently across England, if not across the United Kingdom, as this is clearly a devolved matter for Scotland and Wales. We fully recognise the importance for public health of having effective prevention, treatment and testing services in place for hepatitis C. We are committed to having a robust and effective strategy to reduce transmission and benefit those already infected. To assist in developing our strategy, we set up a multi-disciplinary steering group in March 2001. We have asked the group to provide a draft strategy consultation paper for the Government to consider. We hope that it will be published in the next few months. The steering group has invited key stakeholders, of whom the Haemophilia Society will be an extremely important one, to provide information and advice. I know for a fact that it will comment vigorously.
The consultation paper will provide a framework for strengthening prevention, reducing the level of undiagnosed infections, improving services for patients with hepatitis C and identifying actions to support change. It is anticipated that the implementation of the strategy will be a component of the hepatitis action plan as proposed in the Chief Medical Officer's report.
I turn to the question raised by the noble Lord, Lord Astor, on treatment and haemophilia care in the West Country. As I think he indicated, there is not a comprehensive care centre in the South West, but there are haemophilia centres in Barnstaple, Exeter, Torquay, Plymouth and Truro. These are not comprehensive care centres but comprise the lower stage which do not have every single specialism but are able to deal with much of the medical and social support that families or individuals require. Nevertheless, that still means that perhaps once or twice a year a person with haemophilia and HCV may have to travel outside the region for other care. That is not done simply for reasons of economy; it involves critical specialist functions. Some of these centres need to have sufficient throughput to be able to retain and utilise specialist consultants to provide effective care. That is a highly relevant factor as regards why there is not such a centre in the South West.
The noble Lord, Lord Astor of Hever, also referred to a document which I assure the House is not the Government's consultation paper on the national strategy for hepatitis C, which will be published later this year as I have just indicated. It is, in fact, draft guidance for local authorities and the NHS specifically on blood borne viruses and children in need as defined by the Children Act 1989. We shall have to wait a little while before we see the consultation document itself.
I turn to the significant issue of recombinant clotting factors and their availability for all haemophilia patients. As the House knows, the lives of people with haemophilia were transformed in the 1970s by the development of clotting factors which brought the prospect of a much improved quality of life. However, as we know, these were infected. Everything has been done to ensure that the plasma-derived clotting factors used by people with haemophilia are as safe as possible. Since the mid-1980s, human plasma used to make clotting factors has been treated to remove HIV and hepatitis. Since then, products have had a quite remarkably excellent safety record. As an additional precaution, with the onset of variant CJD, all human plasma derived clotting factors now used by the NHS are made from imported plasma to reduce any potential cross contamination.
However, as has been noted in debate by the noble Baroness, Lady Gardner of Parkes, the noble Lord, Lord Astor, and others, over the past 10 years new recombinant or synthetic clotting factors have been developed. The Haemophilia Society and others have petitioned us to make recombinant factor 8 and 9 the treatment of choice for people with haemophilia. The noble Lord repeated that call today. That is largely based on the ground that recombinant products are regarded as free from the risk of transmission of as yet unknown viruses and free from a theoretical risk of variant CJD.
Before the switch to imported plasma in 1998, the fears of people with haemophilia were heightened by the discovery that some of them had received clotting factors that included plasma from a patient who subsequently developed variant CJD. Although the risk of transmitting variant CJD through blood products remains theoretical, I can perfectly understand why that has caused distress to many people with haemophilia given the history of that condition. Four years ago the Government responded to those fears by requiring NHS trusts to provide recombinant clotting products for all haemophilia patients and children under 16. As I think has been said, currently all patients up to the age of 20 receive recombinant products. Around 55 per cent of all clotting factors used in England are recombinant factors.
As I think has been pointed out, Scotland and Wales, with their devolved powers in these matters, already provide that treatment for all haemophilia patients. However, as the noble Lord is aware, we are giving consideration to extending the provision of recombinant clotting factors for all haemophilia patients in England. We shall take a decision on that matter later this year. It is not being ignored. In the meantime all haemophilia patients are receiving effective treatments with either recombinant or plasma-derived clotting factors.
The noble Lord, Lord Astor of Hever, also drew attention to the question of what research was being undertaken in this field. The Medical Research Council has made about £4 million available for hepatitis research over the past five years. The
Department of Health has made £2.5 million available for hepatitis research since 1996-97. Therefore, there is ongoing research, as there should be.
I turn to a most painful issue. I refer to the issue of compensation to haemophilia patients with hepatitis C. That issue has been raised many times in both Houses. However, the Government's position remains unchanged. Although we have enormous sympathy for the individuals affected by this tragedy, we do not believe that a special payments scheme is justified. I know that that will come as a disappointment to the noble Lord, Lord Addington, and to others who have argued for such a scheme this evening and on previous occasions. That matter rests on the fundamental principle that has been mentioned several times in the House; that is, unless it can be shown that a duty of care is owed by an NHS body and that there has been harm, and the harm was caused by negligence, the Government do not believe that compensation should be paid.
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