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Mr. Tom King (Bridgwater): The Intelligence and Security Committee also undertakes pre-legislative scrutiny of draft Bills. I am not in the least surprised at the Government's findings and the wish not to change the present arrangements. Unfortunately, the Liaison Committee did not bother to consult the Intelligence and Security Committee, which is the most senior Committee of parliamentarians in the House. I hope that the Government will be anxious for the Liaison Committee to consult the Intelligence and Security Committee, whose members have collectively given 200 years of service in the House, before making any change in the future.
Mr. Tipping: The right hon. Gentleman makes an important point. It is important to consult across the whole House on these profound matters.
The Liaison Committee wants Committees to have greater powers to work together. Its solutions rely on the existence of a Select Committee panel. We cannot accept those solutions, but we have indicated that we are willing to bring forward Standing Order changes to facilitate joint working. We have gone further: the Government's response to the Liaison Committee clearly states that
- the Liaison Committee itself will be able to identify the need for any ad hoc committee and make a case for it to the Government. The Government would have to retain the right to choose whether to put such proposals before the House, but the presumption would be that reasonable requests would be granted, and repeated refusals would lead to political controversy.
- we are grateful for the consideration which the Commission has given to our submission.
The report also recommends secondments. The Government have been happy to work with the House authorities to facilitate secondments both into and out of the civil service, and will do so in future.
Many people have spoken tonight, and some have said that the Government's concessions do not go far enough and that we cannot satisfy them. However, I hope that when the dust has settled, right hon. and hon. Members will reflect on everything that has been said today and accept that the Government have already made changes to improve matters for Select Committees. For our part, we too will reflect on this debate.
We have not agreed to debates on substantive motions, but we have provided more time in Westminster Hall than most reformers could ever have dreamed of. Westminster Hall is indeed a parallel Chamber. Ministers must take debates there as seriously as they do on the Floor of the House, and we will ensure that they do.
We have extended the European scrutiny system. We have agreed to the Procedure Committee's proposals on scrutiny of treaties. We have already eased restrictions on joint working at the request of the quadripartite Committee, and will do more. We have sent draft legislation to Select Committees for scrutiny, and we hope to do much, much more. I hope that this will be a defining moment--a defining task--of the Government.
Right hon. and hon. Members may not consider that the changes go far enough, but there has been more change in three years than in the previous 15. The balance may not have shifted far enough for everyone, but we must recognise that it is already shifting towards the Committees.
It being Seven o'clock, the motion for the Adjournment of the House lapsed, without Question put.
NHS Services (Haemophiliacs)
Motion made, and Question proposed, That this House do now adjourn.--[Mr. Kevin Hughes.]
7 pm
Mr. Robert Syms (Poole): I want to draw to the Government's attention a number of important points about NHS services for people with haemophilia, and I hope that the Minister will respond positively.
The current situation is pretty inequitable, particularly across different postcodes. Recombinant factor 8 is being provided to all haemophiliacs in Scotland and Wales, regardless of age and viral status, but in England it is restricted to children under 16 and a few people whose health authority has a policy of prescribing it. The Government took an important step in 1998 in making recombinant factor 8 available to all children; they now need to extend that to adults, as in Ireland and other European countries.
Another example of the inequality of the present arrangements can be found in the English haemophilia centres in Liverpool and Manchester, to which patients from north Wales go for treatment. 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 in Manchester and Liverpool and the surrounding areas do not have the same rights and benefits. That is substantially unfair. The restrictive policy in England might have been valid two years ago when supply problems and shortages would have prevented wider use of recombinant products, but those considerations no longer apply, and the Government should look at the matter afresh.
The provision of comprehensive care centres is also uneven and subject to postcode rationing. Some NHS regions have several comprehensive care centres for haemophiliacs, while others are under-provided. The south-west, where I come from, has none at all, and for haemophiliacs living in Cornwall or Devon, the nearest centre is in Basingstoke in Hampshire. The Trent region, however, has four centres. I hope that the Minister will tackle the need for more generous use of recombinant factor 8 for haemophiliacs.
I know that some haemophiliacs have inhibitors to factor 8, and other products, including recombinant DNA novo 7, are now safe and can be prescribed. The Government need to consider the issue of blood products.
More than 4,800 haemophiliacs in the UK are estimated to have been infected with the hepatitis C virus through the use of contaminated NHS blood products. More than 1,200 of those people were co-infected with HIV. Almost all those who received treatment before 1986--when viral inactivation procedures were introduced--have been affected. Every patient over the age of 14 may have contracted hepatitis C or HIV.
That has impacted greatly on the haemophiliac community. Hepatitis C attacks the liver and is potentially life threatening. Although the prognosis is unclear, up to 80 per cent. of those infected will develop chronic liver disease; up to 25 per cent. will have the risk of developing cirrhosis of the liver, and between 1 and 5 per cent. have the risk of developing liver cancer. It is estimated that the
progression to severe liver disease can take from 20 to 30 years, but some haemophiliacs may have been infected for over 25 years.Figures from the UK haemophilia centre doctors organisation show that up to 1999, more than 113 haemophiliacs have died from liver disease and liver cancer, both of which are related to the end stage of hepatitis C infection. The actual number of deaths related to hepatitis C is likely to be much greater. The Government need to think carefully about that.
The previous Government set up a fund for those with HIV, and the Haemophilia Society and many others would like the Government to consider whether more money and similar administrative arrangements should be provided for those with hepatitis C. Families who have the infection are experiencing problems dealing with it, and they need help now.
There is no national strategy to deal with hepatitis C, nor any national guidelines on management and treatment of those affected. The total lack of planning for hepatitis C services throughout the UK means that standards of management and care after diagnosis vary widely: in some areas, patients have to wait months, or even years, to see a hepatologist or hepatitis C specialist, and there are few counselling and support services. Hepatitis C is difficult to treat: interferon and ribavirin combination therapy was licensed last year and has been shown to clear the virus in about 30 per cent. of cases. It is a highly unpleasant treatment, so the decision to start therapy is not easy, but at least there is a way forward. The Haemophilia Society is extremely concerned that health authorities have so far denied the new combination therapy to those who have haemophilia on the grounds of cost. Now that the National Institute for Clinical Excellence has recommended in favour of the use of the combination therapy, I hope that the Government will rapidly ensure that it is provided to patients with hepatitis C, where appropriate.
Many calls have been made for a public inquiry into how NHS blood products carried the infections. The Haemophilia Society has called for a public inquiry into the whole issue of blood products safety and infection by HIV and hepatitis C. No official inquiry or report has ever been carried out in respect of one of the greatest tragedies in the history of the NHS. The Scottish Executive is conducting an inquiry into events in Scotland, but the English Department of Health has so far refused to initiate such an inquiry. Internationally, the response has been very different: Canada has held a large-scale, four-year investigation and the Canadian red cross has set aside $70 million to $100 million to provide compensation to those infected with hepatitis C. In addition, the issue has been pressed, sometimes through court action, in France, Japan, Switzerland and other countries.
In 1987, the previous Government accepted the moral responsibility to compensate all those infected with HIV and established the Macfarlane trust in 1988 to fulfil that role. People with haemophilia were infected with hepatitis C in the same way and at the same time as those who were infected with HIV, and they experience many of the same problems as those infected with HIV. Therefore, on moral grounds, they should be offered similar financial help. The best way forward would be to extend the role
of the Macfarlane trust, as a vehicle to assist those with hepatitis C. Last week, the Government decided, rightly, that there would be a no-fault package of compensation for those with variant CJD, yet, thus far, more people may well have died as a result of hepatitis C infection through NHS blood products.Given that the previous Government set up the Macfarlane trust and the current Government have accepted that help should be given to families in distress who have been affected by variant CJD, there is a strong argument for helping those unfortunates who have been infected by hepatitis C. After all, more than 100 might already have died as a result of the infection.
In a recent issue of The Lancet, more research evidence regarding the theoretical risk of transmission of variant CJD through blood was discussed. In the same week, representatives of the Haemophilia Society attended a special expert seminar held by EMEA--the European agency for the evaluation of medicinal products--on viral safety of plasma products with regard to non-enveloped viruses, particularly parvovirus B19 and hepatitis A. Taken together, the evidence from The Lancet report and from the EMEA seminar provide further justification for the Government's decision two years ago to ensure that all previously untreated under-16s with haemophilia should be treated with recombinant, as opposed to plasma-derived, products.
Although I am aware that there is, as yet, no evidence that either classical or variant CJD have ever been transmitted to people with haemophilia through blood products, new research shows that we cannot be certain that no risk of infection is associated with those products. Constituents of mine and others have told me that, although they were reassured in the past, their community has been badly affected, first, by HIV and, secondly, by hepatitis. They believe that if CJD rears its head, the haemophilia community is likely to be the first to feel the consequences. The significance of the findings, with the possible implication that blood donated by symptom-free vCJD-infected human beings might be infectious, is such that researchers chose to publish that finding immediately, without waiting for the completion of the study.
Considerable anxiety is generated in the community by fear of blood-borne viruses and diseases that might escape modern inactivation processes used in the manufacture of plasma products. The Haemophilia Society believes that it is most important that the Government take an early decision to ensure that recombinant blood products are given to everybody with haemophilia in England--not only to under-16s, but to adults as well.
There was criticism of the previous Government for the way in which they dealt with BSE. Certain products were banned for babies and children, but not for adults. We seem to have a similar situation in relation to the prescription of recombinant factor 8 and other recombinant products. As I have said, only children under 16 in England receive it. It is a matter of whether people are lucky to live in a particular area. That may depend on whether they receive the product. The Haemophilia Society wrote recently to the Department
of Health asking for a meeting to discuss its concerns. When the Department responds, I hope that it will make it clear that it would be happy to meet representatives of the society to discuss its concerns.These are important issues. There are only a few haemophiliacs, but they have tremendous difficulties. They have suffered greatly because of their particular affliction through blood-borne products, which were provided by the national health service. They have to deal with these problems daily.
The Government should consider what they are doing. They should reflect on postcode rationing, especially as the standard of service in Wales and Scotland is now different from that in England. They should reflect on recombinant factor 8 and its provision to all those in need, including adults in England. There is the associated issue of comprehensive support for haemophiliacs. Many people think that haemophilia is external bleeding, but most of the worst damage is done by internal bleeding into joints. It is extremely important that physiotherapy or hydrotherapy is available quickly so that people's joints are not destroyed. A comprehensive means of service is vital to ensure that people's bodies can stand up to what happens.
The Government took a responsible view in 1998 when, because of CJD, they changed the way in which blood products were treated. That was done as a precaution. That was a good thing to do, but there is still great fear and much more research needs to be undertaken.
Even if the Minister cannot answer all the points that I have raised, I hope he will reflect carefully on what the Government can do to make life much easier for some unfortunate people. I look forward to hearing his reply.
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