Haemophilia

Wednesday 8th February 2012 Westminster Hall

16:01

[Diana Johnson (Kingston upon Hull North) (Lab)]

I am delighted to serve under you today, Mr Weir, and I am pleased to have secured this debate on an issue that I know is of interest to a number of Members from all parties. I pay tribute to the Minister present, the Under-Secretary of State for Health, the hon. Member for Guildford (Anne Milton), who has taken a keen interest in this area, and with whom I have had a number of meetings. I am a little disappointed that the debate is a short one and that I can give only the headline figures. There are many issues to raise, but I will try to concentrate on just a few.

I pay tribute to my constituent, Glenn Wilkinson, and to his family, who first came to see me in 2010 to tell me their story, and to raise the scandal of how he and thousands of others had received contaminated blood products as part of their treatment as haemophiliacs. There are two main parts to what I want to say today: the first is on the ongoing treatment for haemophiliacs, and the second is on the care, support and treatment offered to people who have contracted viruses such as HIV and hepatitis C through NHS treatment for haemophilia. I also want to pay tribute to the work, over many years, of the Haemophilia Society, and of campaign groups such as TaintedBlood and the Manor House Group, and also to the work of the Newcastle initiative, which was born out of a multidisciplinary workshop on haemophilia care held in the city in autumn 2010.

Turning first to treatment, I want to concentrate on the need to ensure that the care and treatment of people affected by bleeding disorders is addressed in the NHS reforms that are currently before Parliament. The haemophilia community has been the subject of what Lord Winston described in his evidence to the Archer inquiry as the

“worst treatment disaster in the history of the NHS”.

There has been much progress in haemophilia treatment over the past decade, but it is now under threat, as is much else, from the Health and Social Care Bill, and I will go on to explain why. Standards of care vary considerably around the country, and there is the risk that the new commissioning arrangements for specialist services will result in a levelling down, rather than up, in haemophilia care.

Haemophilia services are currently commissioned by 10 regional specialist commissioning groups, with funds pooled from their constituent primary care trusts. The Department of Health has also injected extra funding for haemophilia care, which rose to £88 million per annum between 2003 and 2006, to finance the provision to all patients of recombinant rather than plasma-derived clotting factors. That money remains important to the quality of care, but has more recently been absorbed into PCTs’ baseline budgets, and I seek reassurance from the Minister that the money will still be available for haemophilia care post the NHS reforms. I understand that from April 2013 specialist services will become the responsibility of the NHS Commissioning Board rather than of the 10 specialist commissioning groups. That could mean that best practice is spread across England, but equally, there is the danger that under financial pressure standards will be levelled down.

I also want to raise with the Minister the question of where responsibility for haemophilia policy will sit. Because of the contaminated blood scandal, the Department of Health has taken a leading role in the development of that policy, and it is unclear whether after the passage of the Health and Social Care Bill that role will be maintained, or all responsibility will pass to the NHS Commissioning Board. It would help if the Minister could set out her understanding of where that responsibility will sit. Also, will the twice-yearly liaison meetings between the Department and the Haemophilia Society continue? Those meetings were established in direct response to the Archer inquiry’s recommendation that a statutory committee be established to advise the Government on clinical, financial and other provisions for people with haemophilia. There is also a call for a new national policy statement on haemophilia care to replace health service guidance (93) 30, which is now nearly 20 years old and no longer reflects best practice. Can the Minister confirm that that will happen at this stage?

Does the Minister agree with the need to support the development of robust haemophilia networks to combine the best of local care with access to tertiary expertise 24 hours a day? For example, in a recent survey by the Haemophilia Society, only 15% of respondents were aware of having been offered a care plan. In both the report of that survey, entitled “Fit for the Future: Haemophilia Services in the New NHS”, and in the Newcastle initiative’s paper, “Learning from the past to inform the future”, it was found that standards of treatment and care were generally high, which is very encouraging, but that access to the provision of associated services, including dentistry, physiotherapy and psychological support, required significant improvement. The reports also concluded that patients must be given a comprehensive care plan, that they must be able to access home treatment, and that they must be involved in all decisions about all their treatment. Those goals are partially but not consistently met under the current system, and we would, of course, like to see consistency across the whole country.

All Governments have said that lessons about treatment have been learnt from the contaminated blood scandal and that there is a need to maintain the highest standards of care so to avoid any repetition of it.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to Westminster Hall. Is she concerned about the level of support given to haemophiliacs who have received blood contaminated with HIV or hepatitis C? Should an additional level of care and assistance be given to those who suffer through no fault of their own but because of the blood?

[Diana Johnson]

I will come on to deal with the financial support that is available to individuals who have had contaminated blood products and now have HIV or hepatitis C, because that is an important issue.

To finish this first section on the treatment of haemophilia, may I ask the Minister to confirm that there should be continued research, for example into sterilisation in areas with a high risk of variant Creutzfeldt-Jakob disease contamination, in order to support the need to ensure that a contaminated blood scandal never happens again?

The second part of my speech relates to contaminated blood. In recent months, along with many other Members of Parliament, I have been raising the issue of care and support offered to victims of the NHS contaminated blood scandal, as it has come to be known over the past 30 years. My constituent Glenn Wilkinson has campaigned tirelessly for proper support for those who have received contaminated blood products as part of treatment for haemophilia or via other medical treatments, such as blood transfusion in childbirth.

This week, Glenn and other campaigners established the contaminated blood campaign. The treatment of people who contracted hepatitis C from NHS-administered blood products has been particularly unfair, and many of those people have, unfortunately, died already. The campaign set up by Glenn is also fighting for an independent public inquiry on the same lines as the report in Ireland and the Scottish Penrose inquiry, which I believe is due to conclude shortly.

[Jason McCartney (Colne Valley) (Con)]

I congratulate the hon. Lady on securing this excellent and timely debate. I have worked closely with her on the all-party parliamentary group on haemophilia and contaminated blood. Her constituent was instrumental in setting up the new contaminated blood campaign. It would be good if the Minister could pledge to meet leaders of the new campaign to discuss some of the issues and move forward. I know that the Minister has met regularly with some victims of the contaminated blood scandal. This would be a good opportunity to pledge to meet those campaigners and to keep that good communication going.

[Diana Johnson]

I am grateful for that intervention. I pay tribute to the hon. Gentleman for his involvement in and hard work on behalf of the all-party group. He makes an excellent point in asking the Minister whether she will find time. I know that she has a busy diary, but she has made time in the past to meet victims and Members of Parliament. I hope that that will happen in future as well.

On compensation for those infected by contaminated blood products, the Macfarlane Trust was set up in 1988 for people infected with HIV. In 2004, the previous Labour Government established the Skipton fund. In 2010, the incoming Government undertook to review the support available to individuals. Some progress was made, but unfortunately, there are still problems with the system.

In particular, I am concerned about the fact that the Government have introduced a two-stage payment for hepatitis C, but the criteria for determining the second stage are still fraught with difficulties for many. As I understand it, only about 20% of those people with hepatitis C are eligible for assistance via the second stage payment. That must be looked at. My constituent Glenn has produced evidence that removing the artificial distinction between stages 1 and 2 could be achieved and would cost about £22 million, which I am led to believe could be reallocated from the under-spend of other available compensatory pockets of money.

Welfare reform is an issue for the group of people we are discussing. We have had a lot of discussion in the House of Commons about the impact of welfare reform on cancer patients, but there is a special case to be made for people with hepatitis C.

[Paul Goggins (Wythenshawe and Sale East) (Lab)]

I join other hon. Members in congratulating my hon. Friend on obtaining the debate. She speaks powerfully for her constituents, as well as for my constituents, Fred Bates and Peter Mossman, who will be grateful.

The core theme of my hon. Friend’s powerful speech is trust. The trust of that community was shattered by their experience. This Minister is trying hard to restore that confidence, and her work is important, but is it not the case that the needs of our constituents with haemophilia who have been infected with hepatitis C and other infections should always come first now, not last, after the dreadful experience that they have had?

[Diana Johnson]

My right hon. Friend makes a powerful point about trust and the need for us all to work together to ensure that those people do not suffer further, and that they get the compensation and support they are clearly due.

I want to concentrate on hepatitis C sufferers for a minute. I believe that they will be unfairly penalised by the Government’s plans in the Welfare Reform Bill. In a debate in October 2010, I asked the Minister whether it would be possible for people with hepatitis C and HIV to be passported on to the new system. The Haemophilia Society has also asked about people with fluctuating medical conditions, such as bleeding disorders, particularly those with viral infections from contaminated blood products. People suffering from fluctuating medical conditions such as haemophilia, HIV and hepatitis C tend to have good days and bad days.

The Haemophilia Society recommends that the work capability assessment be suspended for people with fluctuating conditions until Professor Harrington has considered the representations of the Disability Benefits Consortium. Many people living with hepatitis C in particular have been placed in the work-related activity group of the new employment and support allowance, rather than in the support group, where benefits will continue indefinitely. That has two consequences: it means that sufferers will have to have annual assessments, and that, after 12 months, their benefits will become means-tested. That is effectively penalising people for prudent behaviour and hard work while they were well enough to be employed.

People diagnosed with hepatitis C know that they are unlikely to be able to continue working until normal retirement age. Furthermore, people must currently wait up to 11 months for a tribunal appeal. It is to be noted that appeals for hepatitis C sufferers have a particularly high success rate. Automatically moving contaminated blood product victims into the support group would save patients stress and the Government money.

[Jim Shannon]

I thank the hon. Lady for her graciousness in giving way. Many haemophiliacs have suffered from poverty and discrimination because of contaminated blood. Does she not feel for that reason that the Government must urgently address those still suffering from such maladies?

[Diana Johnson]

The hon. Gentleman makes that point powerfully. To quote from the report “Fit for the Future”, to which I referred earlier, an individual was asked what could be done to improve their quality of life and said:

“I think the most obvious thing to do would be to be spared the ordeal of having to do battle with the Government for financial security and not having to justify my right to sickness benefit”.

Let us keep working on compensation and related issues to improve life in the longer term for haemophiliacs and all innocent victims of contaminated blood products. In the shorter term, when considering NHS and welfare reforms, let us ensure those people’s lives do not get any worse.

16:18

[The Parliamentary Under-Secretary of State for Health (Anne Milton)]

It is a pleasure to serve under you, Mr Weir. I thank the hon. Member for Kingston upon Hull North (Diana Johnson) for securing the debate. I am grateful for the opportunity to discuss the issue. I also thank her particularly for her comments about the contact that we have had. I will continue to keep in contact with her and many other Members who continue to highlight the specific issues suffered by their constituents. I know that Glenn Wilkinson and others, some of them not still with us, have worked tirelessly on the issue.

I was interested to hear about the new campaign. Of course I will meet its representatives, as I continue to do. This is an opportunity to say that Whitehall can be distant from the rest of the population. As a Minister, I will, as all Ministers should, use the opportunity that Back-Bench and Opposition Members have given us to ensure that we stay in touch and do not become insulated from what is happening in people’s lives.

I wish that I could make up for what happened. It is a very long and sad saga. I can do only what I can do starting from here. I am also aware of the fact that it will never really be enough, because I cannot turn back the clock, but what matters is that we keep contact going.

The hon. Lady asked specifically about future commissioning arrangements and specialised services for haemophilia and other related bleeding disorders. As she has rightly said, those services are currently commissioned at a regional level by specialist commissioning groups. We are working with the NHS to produce a list of specialised services to go in a new set of regulations for the NHS Commissioning Board. At the moment, we are not able to produce a final list, but a list of services currently set out in the Specialised Services National Definitions Set—the titles that the Department of Health and others come up with are extraordinary—will form a basis for the Commissioning Board’s final list. I expect that we will be in a position to announce that list of services in the coming months, at which point it will be subject to consultation.

The hon. Lady is right to say that that will be an opportunity to share best practice. I get frustrated when I hear that some areas do things well, while others do not or do not adopt the same sort of best practice. The hon. Lady has voiced her concerns and fears that this could lead to services being levelled down, but I think there will be an opportunity—I was born an optimist—to share best practice. The financial arrangements for this particular group of people affected by contaminated blood will remain an issue for the Department of Health. What matters on services, however, is that we ensure that best practice is shared.

The hon. Lady mentioned care plans. As somebody who trained as a nurse and who worked in the NHS for 25 years, I get frustrated about this issue, because everybody should have a care plan and everybody should be involved in it. The plan should involve all the different agencies, including the local authority on housing and social services on social care. It could also involve the voluntary sector for people who are isolated. A number of agencies can improve the quality of life and ensure that people’s lives are fulfilling and meaningful.

Today, treatment for haemophilia is much improved. On the issue of blood safety, which the hon. Lady raised, some haemophilia patients still need to be treated with products that have been manufactured from human plasma, but those products are manufactured under very strict safeguards. Many haemophilia patients are now treated with synthetic products, and both types of product are extremely safe. Lessons have been learned. The shadow of what happened all those years ago continues to hang over us and everybody involved with the safety of blood products.

Synthetic and plasma-derived clotting factors are procured nationally by the Department, with commissioners and clinical and patient representatives involved from an early stage. That means that the NHS buys products that are not only cost-effective, but reflect what patients and doctors actually need. In turn, manufacturers and suppliers can better understand what matters to the people who use those products. At the end of the day, that is what should matter to us.

To further improve patient involvement, the Department of Health has brought the Haemophilia Alliance into discussions on all the issues that affect haemophilia patients. The alliance is made up of patients, clinicians and other professionals involved in haemophilia care, and I am grateful to those who give up their time to involve themselves in it so positively.

A decontamination research funding initiative worth about £2.4 million over four years was announced in 2011. It will address the decontamination of surgical instruments, improving the effectiveness of washer disinfectors and exploring contamination and novel technological approaches to the decontamination of endoscopy scopes. These products will also have wider applicability to human prion diseases, such as CJD, and other health-care-associated infections. Some issues are unresolved, because the proven and effective technologies needed to address them do not yet exist. There will continue to be money in research until we are absolutely sure that we have done all we can.

When people were infected with hepatitis C and HIV, it also had a significant effect on their families. We often forget that such issues have a massive ripple effect, not just on immediate family but on distant family. In January 2011 the Secretary of State announced that we would provide additional support, not just for haemophilia patients, but for anyone infected with HIV or hepatitis C by NHS blood transfusion. That support includes ensuring that the annual payment for those infected with HIV is linked to inflation; introducing a similar payment for those most seriously affected by hepatitis C; and increasing the value of the lump sum. The support will also make £300,000 available over three years for counselling services. I find it interesting to look at the uptake for such things, because it lets us know when we have hit the target. It is so important that I continue to get that feedback. The combination of fixed and discretionary payments provides flexibility to enable them to be tailored to meet individual personal needs.

I know that there is concern that insufficient support is available for people who have developed hepatitis C, particularly the Skipton Fund stage 1 recipients. The scientific and clinical advice that we received during the review that we conducted in autumn 2010 did not support regular annual payments to everyone infected with hepatitis C, many of whom go on to clear the virus. I was delighted to hear from one such person, who has campaigned actively. New treatments are available, improving the prognosis for some infected patients, but I know—I think the hon. Lady was at the same meeting as me recently—that concern remains about the cut-off.

I know that one of the constituents of the hon. Member for Kingston upon Hull North has worked out the potential cost of removing the distinction between stage 1 and stage 2, but the current system of payments for hepatitis C is itself based on expert clinical and scientific review, which continues to support the two-tier system. Evidence, however, evolves and it would be arrogant of a Minister to say, “That’s it for ever.” It is terribly important, as I hear about the experiences of the constituents of individual Members, that I continue to receive advice, so that what we do is relative to the current expertise.

I apologise to the hon. Lady for not responding to her e-mail about my meeting with the expert group, but I was delaying my response while departmental officials worked out the details of the meeting. I am pleased to say that I will write to the relevant patient groups, asking them to nominate two people—I think that seems about right—to represent them at the meeting. I think that will be important.

The hon. Lady is probably aware of the Caxton Foundation, which provides support tailored to the needs of those affected. All payments made by the foundation are for the trustees to decide. I have met the trustees and their feedback is important in enabling us to see how the support works. The charity’s objectives are laid out in its trust deed, and it is accountable to the Charity Commission. I do not have any powers to direct it, but it has to be kept under review.

[Paul Goggins]

On the Caxton Foundation, in future will the Minister take particular notice of the needs of carers? It is important that that fund is in a position to support carers as well as those directly affected.

[Anne Milton]

Yes. I thank the right hon. Gentleman for that point. The discretionary ability to distribute funds is important. He is absolutely right to raise the issue of carers, who are all too often forgotten.

The hon. Member for Kingston upon Hull North mentioned the capability assessment. She might want to initiate a similar debate on that issue. Health conditions are not automatically a barrier to work, but we recognise that they are for some people. Indeed, some people will never work and we must make sure that we support them. It would probably not be right—this is certainly not in my gift—to give automatic exemptions, but I urge the hon. Lady to raise the issue with the Secretary of State and the Minister responsible.

[Diana Johnson]

It would be powerful if the Minister made representations to a fellow Minister. Has she had the opportunity to do that with her colleagues in the Department for Work and Pensions?

[Anne Milton]

As the hon. Lady rightly states, in my ministerial role, my responsibility is the health and well-being of the population. I will always continue to make representations, which often taken place—although sometimes they do not happen in the public eye. Just a word about the Lord Penrose inquiry: we will give assistance, but we will not be commenting on that. I have had a few letters about that. I will comment at the end of the inquiry.

The issue of trust has been raised. I will finish by saying that I know a lot of trust was damaged and that that has flavoured many things since then for good but also for ill. That is an extremely difficult issue and I would not presume to say that I can ever get anyone’s trust back for what has happened and what successive previous Governments have done or failed to do. I hope that we will continue to work constructively with other hon. Members to ensure that this group of people get the help and support that they need.