Infected Blood Compensation Scheme

Ian Lavery Excerpts

Wednesday 23rd October 2024 Commons Chamber

[Ian Lavery (Blyth and Ashington) (Lab)]

I have spoken in the House on numerous occasions about this desperately sad scandal, and I have frequently mentioned the number of people who are dying while we seem to have inquiry after inquiry, and ask question after question. The stage that we have reached today is long overdue. The motion goes some way towards allaying my concerns, and the concerns of those who are still suffering as a result of one of the biggest scandals in NHS history.

This is a tragic miscarriage of justice that has destroyed the lives of many individuals and families up and down the country. I have the utmost faith in my right hon. Friend the Paymaster General, and I know that he is aware that many people believe that the proposals before us are incomplete and do not go far enough—hence his announcement that, hopefully, the second tranche of compensation proposals will come to the House before 31 March 2025. That is certainly good news. Nevertheless, there are people who are still waiting, and who will be leading a life of uncertainty between now and then, so we must ensure that we step up to the challenge.

This is the first step taken by a Government who have acted within months of taking office, and this legislation is the beginning of justice for those who have suffered for so long. Along with, probably, every other Member present, I have spoken to many campaigners and many infected or affected victims and families, and my good friend and constituent Sean Cavens, who was infected with hepatitis C as a baby, has been a great help to me in this regard. However, we still have many concerns, although I repeat that the progress made in the first 100 days of this Labour Government has been fantastic.

There is still confusion about the impact that the scheme will have on individual claimants. There is also concern that there has been a lack of engagement generally in order to understand and act on potential weaknesses in the scheme; there needs to be far more engagement. I am sure that my hon. Friend, or right hon. Friend, the Paymaster General will take steps to constructively involve the charities and individuals with an interest in this before 31 March next year. That is not just my view; it is the view of individuals and organisations that I have spent hours and hours with, listening to their concerns. The Haemophilia Society and other campaigning bodies have been absolutely fantastic, and very patient in many ways. As the hon. Member for Aberdeenshire North and Moray East (Seamus Logan) mentioned, these organisations really need to be financed from central Government, if that is at all possible. They have used their resources and campaigning finances every which way they can to try to get justice, and now not only are they totally exhausted, but they have exhausted their finances as well.

The core route for compensation has been laid out today, but there are concerns that there is little information on the supplementary routes. My hon. Friend, or right hon. Friend—I keep demoting him; I promise I do not mean to do that—will be acutely aware that many suffering from haemophilia believe that they will need to apply through the supplementary route; I hope that he can give more detail about how that will work in practice.

There are further concerns about the amount of compensation and the compensation period for those impacted by the infection and subsequent death of a loved one. Also, how were the infected victims who will first get compensation chosen? There are more than 5,000 registered, so if 20 are compensated before the end of the year, that does seem to be a drop in the ocean. Can we have a clear timeline, setting out how many claims the Infected Blood Compensation Authority expects to process per month in 2025? As was mentioned, one victim of this scandal dies every four days.

[Sir John Hayes (South Holland and The Deepings) (Con)]

The hon. Gentleman highlights one of two fundamental elements of the issue—and I thank the Government for what they are doing, which builds on the work of the previous Government. The first element is information for the families and the individuals affected. Clearly, the provision of information will affect exactly what the hon. Gentleman describes: whether people come forward, and whether the rate of payment is maintained at its current pace. The second issue is alacrity. Very often with these things, getting money out quickly matters most, because there is a rate of attrition. Without being macabre about this, some of the people affected will die before they get the money, so alacrity is critical in dealing with this kind of challenge.

[Ian Lavery]

I thank the right hon. Gentleman for his intervention. I have covered a number of the issues that he raises, and will cover more as my contribution continues.

There are other huge issues of major concern; that is being relayed to us by the groups and individuals we have been in constant contact with. For example, they believe that the £10,000 and £15,000 awards for unethical research and testing are far too low. There is no recognition that people with chronic hepatitis C underwent interferon treatment, or of the additional impact that had on their life. There is also concern that hepatitis C payment bandings do not reflect the suffering caused. Bereaved parents and children will receive very low compensation payments if they are not a beneficiary of the estate of their bereaved family member. There is no compensation for the loss, psychological impact and suffering caused by exposure to variant Creutzfeldt Jakob Disease. The list is endless. I think my right hon. Friend the Paymaster General has received a letter from the Haemophilia Society outlining the vast majority of the issues that it wants to raise.

I want to mention the scandal of children being selected for dangerous medical research. Children were given the factor concentrates, despite knowledge of the dangers posed. This is very eerie. It is not British-like. It has been described to me as organised child abuse. The sums of money suggested—£15,000 or £10,000—for compensating victims seem paltry given the horrors that abuse caused. We should think about what happened only a few years ago at Treloar, a school set up basically for haemophiliacs. We have had institutions up and down this country experimenting on children. That does not sound like the UK, does it? They have been experimenting on children, unknown to those children and their families. I simply cannot get my head around this sinister issue. There needs to be a lot more focus on what happened back in the day when this country, and the great NHS, was experimenting on young kids. It is not just Treloar; it has received a lot of attention, but there were other such institutions up and down the country. We need to get to the bottom of this, and the country and the Government need to send a clear message that this experimentation is wholly unacceptable. I know that the Government will look into the issue and act on it with the utmost haste. It is absolutely critical that those who have suffered this injustice—this scandal—for so long get the redress that they sorely deserve.

As we discuss this scandal, we should not forget those who have suffered, such as my aforementioned constituent Sean Cavens, who continues to be an inspirational campaigner on the issue, standing up for those who are unable to do so and all those who, tragically, have lost their life. Every Member speaking in the debate will no doubt mention individuals in their constituency who have been campaigning; they have done a fantastic job, and good on them.

The Labour Government have taken giant steps to address the scandal. I would like to thank personally, and on behalf of the people I have spoken to, my right hon. Friend the Paymaster General and his team, and I urge them to consider the many outstanding issues before this matter comes back to the House on 31 March 2025.

--- Later in debate ---

[Nick Thomas-Symonds]

I note that time is short. I will get through as many of the points that have been raised as I can, but I say to all right hon. and hon. Members that my door is very much open; please do follow up with a letter to me if there are specific points that you want me to provide a more detailed response to. I would be more than happy to do that.

In this debate we should always start with the victims at the forefront of our minds—what they went through, and how long, unfairly, they had to fight for justice. Several Members have raised the excellent work that support groups do, in supporting victims and providing advocacy for them. The Government will be engaging with those groups. The Government will be asking what more support is required. Several Members asked about that; the Government will take that work forward.

I will try to move through the points on the basis of the order in which they were raised, starting with the right hon. Member for Salisbury (John Glen). He can certainly take my assurance that the Government are in rapid delivery mode. The point he made about complexity is a fair one. In addition to the explanatory memorandum there was an explainer, and there were case studies, published on gov.uk. I know, too, that the IBCA will provide direct support to each individual who applies for compensation. There will be caseworkers to seek to ensure that individuals understand how the scheme works and the choices they can make. Work is under way on the second set of regulations. In drafting the new explanatory memorandum I will take on board the point that was made by the Committee, and by the right hon. Member for Salisbury, and use plain and simple English wherever possible.

I have set out a number of times in the House that payments will be beginning by the end of 2024. A number of Members asked about the initial 20. The reason for that is that the IBCA is adopting a test-and-learn approach. Taking an initial representative group is the best way subsequently to ramp up the process to be as swift as possible. That has been done with the objective of getting money out of the door as quickly as possible. Of course it will now be for the IBCA to build a service that balances speed with ease of use—and of course data security, which I know would be another concern for the House.

On the second set of regulations about the supplemental route in respect of the infected and the affected, I am saying not that they will be laid by 31 March 2025 but that, subject to the vote of this House, I want them to have passed through the House by that date. I want us to move as swiftly as we possibly can.

The decision on the sequencing—the split between the infected and the affected that the Government have adopted in these regulations—was made on the basis that it would allow orderly implementation of the legal framework without impacting or delaying the delivery timetable for payments to the infected and the affected. As I have said, I hope for, and am sure that I will have, the House’s assistance in ensuring that the regulations can be approved by 31 March next year. I may have misunderstood the point made by the right hon. Member for Salisbury about an impact assessment, but the equality impact assessment is on the Government website. As for the question of cost, he has not long to wait now; he will be able to study the Budget Red Book next week.

My hon. Friend the Member for Newport East (Jessica Morden) has been an extraordinarily powerful advocate for the Smith family. I do not think any of us can ever imagine the pain of losing a child in those circumstances. I hope that she heard my reassurance about the work of charities, and the work that the Government will now do to engage with the groups.

I have been asked a number of times about our next action, which involves the interim payments for the estates of the deceased infected. I promise that the deadline of the end of October will be met, and I will update the House tomorrow during Cabinet Office questions. I have also been asked about further opportunities to debate this issue. I have already promised that there will be a debate this year about progress on the implementation of Sir Brian Langstaff’s 12 recommendations. Compensation is obviously one of them, and I am sure that the House will understand why I am trying to drive that forward as quickly as I can, but the others are hugely important as well, and will be debated in the House.

[Ian Lavery]

One recommendation was for the establishment of a memorial, or memorials, in all the countries of the United Kingdom. Can my right hon. Friend update me on where we are with that?

[Nick Thomas-Symonds]

I hope to be able to make an announcement about it shortly. I have told the House previously how important I think the memorialisation proposals are, and they will certainly form part of the update that I will give the House before the end of the year.

I join the Liberal Democrat spokesperson, the hon. Member for Richmond Park (Sarah Olney), in congratulating the students whom she has had with her and on the work that they did in researching this subject for her speech. What she said about a culture of cover-up was important. What Sir Brian Langstaff said was not that there was some specific conspiracy between individuals, but that there was something far more pervasive, which he described as a culture of “institutional defensiveness”. People and institutions put their own reputations above the public interest, and to tackle that the Government will be pushing forward with a duty of candour. That, in my view, will be a powerful lever that the House can pull for change, but it is not just about a change in the law. It is about leadership as well, and it is about culture and changing the culture, in order to bring about a system in which the public interest is put first and we collectively do all that we can to minimise the chances of a repetition of what has happened in relation to not just this scandal but others, such as Horizon and Hillsborough.

The hon. Lady and a number of other Members asked about the severity bands. The scheme is tariff-based, and the tariffs were developed through the work of the infected blood inquiry response expert group, whose members were appointed by the right hon. Member for Salisbury when he was Paymaster General. They were clinical and legal advisers, assisted by social care specialists. The Government then chose to improve the scheme after the engagement exercise that Sir Robert Francis carried out, as I mentioned to the right hon. Gentleman during the general election campaign.

The comparison between HIV and hepatitis C has been raised. For people infected with hepatitis C there are four severity bands, and they are designed in line with clinical diagnostic markers. Recognised health conditions, for example liver damage, have, therefore, been informed by the work of the expert group. It is correct that in comparison there is a single severity band for people infected with HIV. That is because HIV is a lifelong infection. The vast majority of people infected with HIV through blood products have experienced progression to advanced symptomatic HIV disease, including AIDS conditions, and have died as a consequence of the infection. Those who survived continue to be severely impacted by the infection, and the view of the expert group was that it was disproportionately complex and onerous to disaggregate that category into different experiences, and that contrasted with hepatitis, where there is a wide range of experiences, including both acute infections with long-term limited impacts and very serious and ultimately fatal infections. That is the approach, based on the expert group, that the Government have adopted.

Similarly, on siblings, which several Members have raised, the scheme is based on recommendations from Sir Robert Francis’s framework compensation study. It does not exclude siblings over 18 who may have been carers and provided care.