Contaminated Blood

Norman Lamb Excerpts

Tuesday 12th April 2016 Commons Chamber

[Norman Lamb (North Norfolk) (LD)]

I, too, pay tribute to the hon. Member for Kingston upon Hull North (Diana Johnson) for her amazing campaigning work, and indeed to the other hon. Members who helped secure this debate. I also pay tribute to the organisations Tainted Blood, the Contaminated Blood Campaign and the Haemophilia Society, which have campaigned for years to get justice for so many people. We should also pay tribute to the many individuals who have fought on and on for justice, often in very difficult circumstances.

The Minister should reflect on the extraordinary unanimity of view in this debate, on the reflections in the consultation, on the proposals that the Government have put forward and on the need to think again. This is not a party political issue, because all Governments are to some extent culpable—Labour Governments, Conservative Governments and, indeed, the coalition Government. This is a moral imperative—there is no doubt about that. We have to offer these people justice, and the Government must accept that.

The Government set out the principle right at the start, in their introduction to the consultation, by stating that they accept and recognise their responsibility to everyone infected as a result of NHS treatment, but that leaves out those people affected. This is about not only those infected, but those affected. What about all the loved ones, the children, the spouses and the partners bereaved as a result of loss of life? The Government should accept responsibility for them as well. They have to accept that when they respond to this consultation exercise.

Serious concerns have been raised about this set of proposals. The Prime Minister said—his words were very clear—that:

“We will help them more”—[Official Report, 11 March 2015; Vol. 594, C. 289.]

Yet the proposals, when we see the detail, include a proposal to cut the amount of money that individuals receive. That is not consistent with what the Prime Minister said, so surely the Government must think again. It is surely unconscionable that people in very real need will lose out financially as a result of these proposals. What assessment have the Government made of the winners and the losers? How much will some people lose? It is really important that the Government are open about that. If the Minister cannot respond today, I would be grateful if she wrote to hon. Members to set out the assessment of the amount some people will lose, and of how many people are likely to lose, as a result of these proposals.

As my right hon. Friend the Member for Orkney and Shetland (Mr Carmichael) and others have said, it is surely not right that people in Scotland benefit more than people in England. Surely everyone should be treated exactly the same as a result of this scandal.

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

Will the right hon. Gentleman give way?

[Norman Lamb]

I will not, because I am concerned about the time.

Ending inflation-proofing actually means that we plan a cut to what people are paid every year for as long as there is inflation. Surely we cannot begin to justify that.

I have a problem with the principle of funding new medical treatments at an early stage by taking money from people’s financial support. That surely confuses two principles. We should leave intact the money that is available for people’s financial security.

I am concerned that the money will come from the Department of Health. The impact assessment talks about the other things that cannot be done as a result. Surely the money should come from the Treasury. In the Budget, the Government cut capital gains tax. I heard recently of one individual who will benefit to the tune of nearly £1 million as a result. These are political choices. Do we as a country want to cut capital gains tax and give large sums to very wealthy people at the same time as cutting financial support for people who have lost out as a result of a national scandal? That is surely unacceptable.

I therefore say to the Minister: accept what the Haemophilia Society says, withdraw these proposals and think again.

--- Later in debate ---

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

We have paid tribute to many of the people who have come from across the UK to listen to today’s debate, but there is one group missing: members of Haemophilia Scotland, who are in Tayside attending a funeral of one of their members, the second of three brothers who have haemophilia. The remaining brother has had a transplant because of liver damage. I expect that everyone here would want to send their condolences to the family.

Let us recall that this scandal has been going on for over 40 years. People have been dying without being recognised and without being looked after for all that time. It really is a disgrace. We talk about not accepting liability. I have my specs on because I want to read out some quotations, which, as Members know, I do not normally do. I have a letter here. According to a leading doctor in the Food and Drug Administration in America, in May 1985, heat treatment of blood products had been available for some time, but non-heat-treated blood could continue to be produced with the current licences because the FDA was not going to do anything about it. It could have regulated the practice out, but it wanted things to be tidied up quietly. The doctor explained that although the FDA could revoke the licences through regulatory process, it did not want any attention to be paid to the fact that the practice had been allowed to continue for so long; it wanted the issue to be

“quietly solved without alerting the Congress, the medical community and the public.”

I have a copy of a letter from John Major, the former Prime Minister, who was at the time Chief Secretary to the Treasury. In 1997, he wrote to Tony Newton, then a Health Minister, raising the possible consequences of a sympathetic response to the Haemophilia Society:

“It could lead to an open-ended commitment of huge dimensions

and

“give rise to court action against the Government because of the implication of negligence”.

He asked Tony Newton to “consider the points” made by the society, but

“with no implication that the Government will take action.”

Here we are, nearly 30 years on, in almost exactly the same situation.

As has frequently been mentioned, this is the biggest treatment disaster in the NHS, and it happened because we were importing American coagulation products and American blood—blood taken from prisoners, or units of blood that were sold. Who sells their blood for donation? People living on the streets; people who are drug addicts. The main reason haemophiliacs and others are suffering is that making factor VIII meant using the blood products of multiple donors, which meant an increase in the risk of a positive result. Moreover, the haemophiliacs received those products over and over again.

Here we are, all these years on. When I graduated in 1982, and when I worked as a young surgeon throughout the 1980s, this was just beginning to emerge and be discovered. It certainly left me, as a surgeon, with an absolute fear of transfusing blood. I used to go to great lengths to use electrocautery and other techniques to avoid shedding blood in elective cases, because we did not know what other problems were there.

Some of my colleagues have drawn attention to the exact terms of the Scottish settlement, but the first three can be summarised thus. People who are suffering from hepatitis C, HIV or co-infection will receive more money, allowing them to receive at least the equivalent of an average income of £27,000. People with stage 1 hepatitis C will receive £50,000 instead of £20,000, and those who have received compensation of £20,000 in the past will be eligible for £30,000 now. It is totally accepted by the Scottish Government that focusing solely on cirrhosis is a rather bizarre way of assessing people, and they are entirely open to an evidence-based piece of work in the future looking into how people should really be assessed.

I think that one of the biggest differences in Scotland is the recognition of the bereaved families. They will receive the money for another year, and will then receive a lifelong pension of 75%. Our flexible fund will continue to be topped up to the point of £1 million a year. As has already been said, that will not give people back their lives, but it can allow them to live with dignity.

The right hon. Member for Orkney and Shetland (Mr Carmichael) and the right hon. Member for North Norfolk (Norman Lamb) suggested, with a degree of criticism, that Scotland had gone ahead rather than seeking a United Kingdom solution. How long should we wait? Scotland was criticised because although we were ready to screen blood in 1990, we waited until 1991 so that there would be UK screening of blood donations. We made that mistake then, and we cannot make it again now.

[Norman Lamb]

Will the hon. Lady give way?

[Dr Whitford]

I am sorry, but I do not have enough time.

I do not think that we would be debating this matter with the same urgency if there were not the contrast with what Scotland is doing. This is not just about financial support and recognition. All patients in Scotland with hepatitis C for whom Sofosbuvir is appropriate can receive it. I find it shocking that people in England who have been infected with contaminated blood should have to use any of their funding to buy a drug that can increase their quality of life and reduce the risk of giving the condition to their family. We are doing this not just for those patients but as a public health measure. If we reduce the burden of virus in the community, we will reduce the number of new cases.

A year ago, the Prime Minister and our First Minister responded to the Penrose inquiry. That inquiry was carried out in Scotland; the UK has never had a public inquiry on this matter. Both of them apologised, and our First Minister has used this first year to set up a group to look into changing support, and ensuring that people can access treatment and that families are recognised. I call on the Prime Minister to honour his apology and to ensure that patients in the rest of the UK receive the same treatment.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

I thank the shadow Minister and the hon. Member for Central Ayrshire (Dr Whitford), the SNP spokeswoman, for granting me a little of their time to respond to many of the points made during this excellent debate. I congratulate members of the all-party parliamentary group on haemophilia and contaminated blood, in particular the hon. Member for Kingston upon Hull North (Diana Johnson), on securing the debate and on their campaigning work, to which tributes have rightly been paid. I also wish to thank those who have taken considerable time and trouble, and made considerable efforts, to travel down to London today to express their feelings to their Members of Parliament; some have been able to stay to listen to the debate. I am going to spend as much of my time as possible responding to as many of the factual questions I have been asked as I can, so let me move swiftly on to that.

The consultation on infected blood scheme reform seeks views on what a reformed scheme should look like. This is the first public consultation on this matter by a Government, although there have been other consultations led by parliamentarians. Obviously, it has attracted a lot of interest from Members, as indicated by the presence of those contributing today. I know that many Members, myself included, have had personal frustrations and concerns expressed to them over many years by constituents.

Members will appreciate that, as the consultation is still open, I am not in a position to give any commitments or guarantees on the shape of scheme reform today. Indeed, I want to reassure the House that no decisions on scheme reform will be made until the consultation has closed and all the responses have been carefully analysed. I have listened with keen interest to the various points that have been made and I will carefully consider the contents of this debate, alongside the responses to the consultation.

None the less, I am aware that there are some concerns—they have been expressed today—about the consultation and some of the proposals, and I will try to address those today. First, let me deal with any lack of clarity on the additional funding committed. To be clear, when I launched the consultation I announced £100 million of new funding for the scheme. That is in addition to the current spend of about £22 million per year and the £25 million announced by the Prime Minister in March 2015, so it will more than double our annual spend on the scheme in England over the next five years.

To date, we have spent more than £390 million on support for those affected, and the additional funds I have announced bring the budget for the next five years to £237 million. That means that, over the lifetime of the schemes, we project that more than £1 billion will be spent on support for those affected. The money comes from the Department of Health budget—I hear the points that have been made about where people think the money should come from, but that is where it is coming from and that is the funding we have been able to identify. We are more than doubling the budget for the next five years. This financial assistance is voluntarily provided by Government to help those infected and their dependants. I wish to ensure, and the key aim of the scheme is to ensure, that the money is distributed in a fair and equitable way within that budget envelope and within the legal framework within which I am working, in a way that is also sustainable for the future.

With that in mind, I want to emphasise to Members and to the House that this is a truly open consultation; I genuinely want to hear from all those who have been affected. It has been very useful for me to hear the points made in this debate. I want to hear what support would be most beneficial within the parameters I have set out.

To give some idea of how widely we reached to try to get responses to the consultation, I should say that letters have been sent to all 3,482 registrants of the existing schemes to make them aware of the consultation and provide them with details of how to access it. Letters were also sent to almost 180 Members who have at various times, by various means, contacted us on behalf of constituents over the past year or so, and they have been urged to respond, too. We have already received more than 1,200 responses to the consultation, and I hope that reassures some Members, including the hon. Member for Hammersmith (Andy Slaughter), who were worried that people might have found the consultation difficult to respond to. That is a very good level of response and it is enormously helpful. I am very pleased that so many people have taken the time to feed their views into the process. It might be helpful and, I hope, reassuring for Members to know that a specific team in the Department has been established to ensure that every response is read in full and captured in the analysis, and given that respectful hearing to which one Member referred.

It has been very valuable in the contributions to the consultation we have already received to hear from the quieter voices in the affected community that I have spoken of before. Indeed, I have been struck—in some ways shocked—by the number of affected individuals who were not aware of some of the support potentially available to them, such as the discretionary financial support and non-financial support provided by the three charitable scheme bodies. That has reinforced my sense, which I think is shared across the House—I say that especially in the light of today’s debate—that scheme reform is necessary, especially with a view to simplification and transparency. That point was put very ably by the hon. Member for Heywood and Middleton (Liz McInnes). There are still a few days left in which to submit responses, and I encourage anyone who has not responded but would like to do so to respond before midnight on 15 April.

Let me turn to some of the proposals in the consultation. I know that some of the charitable scheme bodies wrote to their beneficiaries to help clarify the consultation proposals, but some of the nuances were lost in the letters. A number of speakers, including my hon. Friend the Member for South East Cornwall (Mrs Murray), have reinforced that point. Let me confirm that the crux of the consultation is the proposal that every chronically infected individual would, for the first time, receive an annual payment under a reformed scheme. At the moment, those who are registered with the Skipton Fund at hepatitis C stage 1—that is 2,424 people, which is more than 70% of the total number of infected registrants—are not eligible for annual financial support. We are proposing a new annual payment for everyone in that group, reflective of the level of ill health they experience. Should the proposal be taken forward, we anticipate that a large proportion of the additional money committed will be used to provide these new payments.

The proposed reforms would continue annual payments to those who currently receive them, which is, approximately 840 people. Those who are currently registered with the Skipton Fund at hepatitis C stage 2, and those with HIV registered with MFET Ltd would have their payments increased to a rate of £15,000 annually, and those co-infected with HIV and hep C would benefit from an uplift to £30,000. That means that, over the next 10 years, someone with hepatitis C stage 2 would receive £150,000 in addition to any payments they have received to date. Someone co-infected would receive £300,000 in addition to the support they have already received. None of those payments is taxable, nor does it affect a person’s entitlement to any state benefits.

There has been mention of the link to the consumer prices index. I know that there is some concern about the proposal to remove the linkage to CPI. CPI linkage can result in an annual increase or, in theory at least, a decrease in payments. This year, CPI was negative, but we decided to freeze payments to ensure that support for infected individuals did not decrease as a result. Fixing the payments at a set rate would provide more financial certainty over this spending review period for those receiving annual payments. However, I will take very careful account of the concerns that have been raised in response to the consultation when making my final decision on this matter.

[Norman Lamb]

rose—

[Jane Ellison]

I will give way if the right hon. Gentleman is really brief.

[Norman Lamb]

The Minister has explained that many people will benefit, but will there also be losers? If there are, will she write to confirm how much they will lose by and how many people will be involved?

[Jane Ellison]

I cannot give the right hon. Gentleman that clarity today, and there is a specific reason for that.

I will move on to discretionary support for infected individuals. Obviously, I have heard the concerns—I have had a number of letters and held a number of meetings. Some people came to the surgery that I organised. The hon. Member for Kingston upon Hull North was not able to make it, but other Members came and talked about this point. In the consultation, we did propose providing discretionary payments only for travel and accommodation costs. We addressed this issue because, prior to launching the consultation, one of the main criticisms of the current system raised by different groups of beneficiaries and their MPs and by the all-party group was that discretionary grants and the process of applying for them was “demeaning”.

However, I am aware that, through the consultation responses, a number of beneficiaries are troubled by the consultation question on discretionary payment, and those voices have been heard today. In principle, discretionary support should be means-tested, which means that it will vary with circumstances over time. However, it has become clear that, through the independent charitable schemes, a relatively small number of individuals are receiving regular and significant levels of discretionary—as opposed to regular—support. I encourage anyone who feels that they are in this position, or would lose out as a result of the consultation proposals on discretionary support, to reply to the consultation explaining that. No decisions have been made about some of the other discretionary elements on which Members have touched. I hope that clarifies the distinction between our assessment of the impact of annual payments and the impact of discretionary payments, some of which could not be known to us because they were put out through independent charitable schemes.

I welcome any suggestions that respondents may have in relation to the proposals and what would be of benefit to them. This, along with the rest of the consultation responses, will help us to decide what we might be able to do within the budget. We are well aware that some of the non-financial elements of support, which are currently provided by the charitable schemes, are valued. I want to reassure colleagues that we are entirely open-minded about this provision. As I have emphasised previously, it is up to people to tell us through the consultation what they most value in that non-financial support.

Let me touch on the Scottish reforms. Clearly, that has been quite a key theme today. I have been asked to consider matching the recent reforms. The Scottish Government established a financial review group, as we heard, and they announced their plans on 18 March. The package announced by the Scottish Government differs from the proposals on which the Department is consulting. One major difference is in relation to annual payments provided to infected individuals. The Department of Health proposals for England are intended to ensure long-term stability and security to all infected individuals. The hon. Member for Newport East (Jessica Morden) made a point about long-term security and sustainability. To reiterate, in England, there are about 2,400 individuals with hepatitis C stage 1 who do not receive any annual payment. Our proposal is to provide a new ongoing payment to all those individuals that reflects the level of ill health that they experience. The Scottish Government have chosen to provide a lump sum payment.