Infected Blood Compensation Scheme Regulations 2024

Monday 21st October 2024 Lords Chamber

Motion to Approve

19:31

Moved by

[Lord Ponsonby of Shulbrede]

That the Regulations laid before the House on 23 August be approved.

Relevant document: 2nd Report from the Secondary Legislation Scrutiny Committee (special attention drawn to the instrument)

[The Parliamentary Under-Secretary of State, Ministry of Justice (Lord Ponsonby of Shulbrede) (Lab)]

My Lords, I start by reminding the House why we are here. The infected blood scandal is a mark of shame on the British state. The infected blood inquiry’s final report, published on 20 May, shed light on the trauma inflicted on thousands of people across the country, through no fault of their own. People were given contaminated blood or blood products, contracted HIV, hepatitis C and hepatitis B, and then for years had their voices ignored. People who loved, knew and cared for someone who was infected—those who were affected—similarly had their voices ignored. This did nothing but compound the trauma of all involved.

The infected blood inquiry’s second interim report set out 18 recommendations on compensation, informed by Sir Robert Francis’s 2022 compensation scheme study. The inquiry was unequivocal that a compensation scheme must be set up immediately. The regulations we are debating are essential for delivering that compensation scheme and getting money to people as quickly as we can.

The scheme is based on the recommendations and principles put forward by the inquiry. In line with these, and supported by the advice from the inquiry response expert group and the engagement exercise that Sir Robert Francis undertook in June, the Government have sought to design a fair and comprehensive compensation scheme that will be quick and simple for eligible applicants to access. We support the shared determination across the House to deliver compensation as swiftly as possible and with the minimum possible delay. These regulations are a significant step towards that.

I turn first to eligibility. The scheme and the regulations define people who are eligible as infected people, in line with recommendation 2 of the inquiry’s second interim report. This covers people infected with HIV, hepatitis C and hepatitis B, including people directly infected by treatment with blood, as well as people indirectly infected via transmission from a directly infected person.

Secondly, the regulations establish a core route for claiming compensation as an infected person. The core route provides compensation under five awards, or categories of loss, as set out in recommendation 6 of the inquiry’s report. These awards include an injury impact award, a social impact award, a care award, a financial loss award and an autonomy award, which together will comprise the total compensation award to be given to infected individuals, or to the estates of any deceased individuals, to recognise the wide-ranging harm resulting from their infection.

Earlier this year, the Victims and Prisoners Act established the Infected Blood Compensation Authority in law to deliver the scheme, and with these regulations we are providing the authority with the legal powers needed to begin making payments. The regulations also provide further detail on how the Infected Blood Compensation Authority will accept applications and pay awards.

Since the authority was established in law, it has been working hard to design and implement effective, simple and secure processes for members of the community, with their input, to claim the compensation that they so clearly deserve. Last week, the Infected Blood Compensation Authority reached out to the very first claimants under the infected blood compensation scheme. The authority is taking a “test and learn” approach, which will ensure it can take on board feedback and improve the service before it opens its full compensation service. This is a significant step towards our shared intention to begin payments by the end of this year and ultimately will ensure that the service is as fast and as simple as possible when it opens for everyone. I hope this step provides confidence that we, and the authority, are absolutely committed to driving forward progress with the scheme in a way that puts the infected blood community at the heart of our work. The Government expect the authority to begin making payments by the end of this year.

I will speak now to the concerns raised by the Secondary Legislation Scrutiny Committee, which I believe noble Lords may wish to raise in today’s debate. As the committee noted, the infected blood scandal stretches back over many decades and access to records, such as medical records, may not be possible or may be very challenging. Where this is the case, the authority will need to make objective decisions relying on the evidence that is available to determine, on the balance of probabilities, that treatment with infected blood occurred. The authority will provide assistance to those who believe their medical records have been lost or destroyed, and evidencing eligibility will be easier, faster and more compassionate than, for example, through any court proceedings.

The committee also raised concerns around the complexity of the regulations and the Explanatory Memorandum not being clear enough to explain the practical operation of the scheme. Given the complexity of the regulations, we were aware that they would not enable individuals to understand the scheme. That is why, alongside the publication of the regulations and the Explanatory Memorandum, the Government published a detailed policy paper in August on how the compensation scheme will operate, setting out what individuals can expect to receive, including case study examples. Additionally, the Infected Blood Compensation Authority will aim to ensure that appropriate advice and support are available to assist people with managing their compensation awards, accessing financial services and accessing benefits advice where relevant.

Thirdly, the committee raised a concern regarding how claimants will receive payments. As set out in recommendation 10 of the infected blood inquiry’s second interim report, the regulations include an option for members of the community to choose between receiving payments as periodic compensation or as a lump sum. Providing people who are due compensation with a choice in how they receive their money is something the infected blood community has highlighted as important to claimants. The regulations include a mechanism for electing for periodic compensation payments or a lump sum, responding to the wishes of those who have told us they want this option.

We have also provided an alternative for those currently receiving support scheme payments through the infected blood support schemes. The IBSS route was developed following the recommendations of Sir Robert Francis, who undertook engagement with representatives of the infected blood community in June.

The biggest concern raised in this engagement was around the continuation of the existing support scheme payments. Following Sir Robert’s recommendations, the Government have agreed that support scheme payments will continue for life for those who elect the IBSS route. This route will be available for those who applied to be registered on a support scheme on or before 31 March 2025 and delivered as part of the compensation package.

In a tariff-based scheme designed to be fast, fair, consistent and secure, we hope that people will be satisfied that they have been provided with full and fair compensation, as the scheme sets out. However, should this not be the case, the regulations make provision concerning review of decisions made by the authority and for appeals to the First-tier Tribunal.

I know that this House is in complete agreement when it comes to paying long-overdue compensation to those impacted by this harrowing scandal. Following the passing of the Victims and Prisoners Act, these regulations are the next substantial step towards getting money into the hands of those who deserve it. However, the work is far from finished and I pay tribute to the noble Baroness, Lady Brinton, for providing the opportunity for the House, through the regret amendment that she has laid, to recognise that there is more work to be done to establish the scheme for parents, children, siblings and carers. I reassure the House that a second set of regulations will provide for other elements of the compensation scheme, including compensation payments to people who are affected and for claims outside the core route. Subject to parliamentary approval, the Government are aiming for the second set of regulations to be in place by 31 March 2025 to support our intention that people who are affected can start receiving payments in 2025.

I hope that colleagues will join me in supporting these regulations and I beg to move.

Amendment to the Motion

Moved by

[Baroness Brinton]

At end insert “but that this House, while welcoming the progress made to compensate eligible infected persons, regrets that close family members and carers affected by the infected blood scandal are not included in the Regulations, as recommended by the Inquiry”.

[Baroness Brinton (LD)]

My Lords, I start by saying that I shall not call a vote on my regret amendment. It is important to avoid any delay to the infected blood victims receiving either interims or full compensation settlements—it would be wrong. However, I have a number of questions relating to this instrument and to the one that the Government say that they will lay next year. It is good to see the Minister in his place, as well as the noble Earl, Lord Howe, on the other Benches, because it was we three who debated this in detail during the passage of the Victims and Prisoners Bill.

I understand that these are complex matters, but at the root of them is the vital and delicate issue of trust with the victims of this scandal. Would the Minister meet me, as well as writing to me with some of the detailed answers to my questions that I have today, which I appreciate that I have not been able to give him advance sight of? I also thank the Secondary Legislation Scrutiny Committee, and the Minister for responding to its concerns. In its second report of this Session, it points out that the Explanatory Memorandum is

“overly complex and technical, while lacking basic information”.

At paragraph 44, it points out that there is “no clarity” about how many infected persons will have been paid by the end of this year.

The September Statement from the Paymaster-General talked about a “user group” testing out the new scheme. Can the Minister confirm that this user group, or the group that he described a couple of minutes ago—the “test and learn” group—comprises only 20 people? Will those 20 people be paid by the end of this year and how many others of the eligible infected persons will receive their settlements by the end of this year? Is there now a likely time when those infected persons already in the system will have received payment?

The main reason I move this regret amendment is that the regulation in front of us today does not deal with the group of victims called the “affected”. As the Minister said, these are the wives, partners, parents, children and siblings of infected victims. The Victims and Prisoners Act, passed on the last day of Parliament before the general election, sets out in Section 49 the definition of the two groups of people entitled to compensation under the scheme. The outgoing Government were absolutely clear that they wanted the regulations for the compensation scheme within three months of passing the Bill, which is why this regulation, 872, was laid on 24 August, in the depths of recess, and brought into effect immediately under the emergency processes. I am very grateful to the Paymaster-General for telephoning me on 22 August to explain that the Government were keeping to the arrangements made by the previous Government.

19:45

I think everyone understands that urgency. Infected blood victims and affected victims are dying, on average, one every four days. This matter is of extreme urgency. However, Part 3 of this instrument defines “eligible infected blood persons” but not the affected persons. It does not even define them; it is completely silent on them.

Sir Brian Langstaff’s final report recommendations made it absolutely clear that both infected and affected were to be given interim payments as quickly as possible. Before that, his second interim report in 2023 expected them to be given by December 2023. Can the Minister explain why this Government decided that they would breach this really vital core element of the compensation and redress scheme? Any references in these regulations to the family members surviving an eligible infected blood person refer to them as the “representatives” of that person. In the case of a widow, where the husband was intestate, or a long-term partner, not wife, of an infected person, it is quite possible that the representative of the infected person may not be the same as the affected person identified in Sir Brian’s and Sir Robert’s reports.

Why is this so important? Sir Robert Francis’s report makes recommendations for delivery of the infected blood compensation scheme and is clear about the suffering of the affected, saying:

“More specifically the report’s consideration of the evidence of the impact of stigma makes it clear that many affected persons experienced events which were equally distressing to the infected persons involved. For example … The husband and wife who were both physically attacked … A daughter physically bullied, had stones thrown at her, and her dress torn off at school because her father was infected … Families who moved homes and employment to avoid victimisation … Lives ‘ripped apart’ and ‘wrecked’ for infected individuals and their families”.

In his Statement to the Commons on 2 September, the Paymaster-General said:

“The infected blood scandal is a shameful mark on the British state, and those who have been impacted have waited far too long to receive financial redress and true recognition of their suffering ... The voices of people who are infected and have been affected have gone unheard for far too long, which has compounded the trauma”.

He was right. But at the end of the Statement he said that

“the work is not finished”.

Indeed, I think that the Minister here used very similar words. He went on to say:

“A second set of regulations will provide for other elements of the compensation scheme, including compensation payments to affected individuals and for claims under the supplementary route”.—[Official Report, Commons, 2/9/24; cols. 74-76.]

This contrasts with the start of his Statement, that they have waited far too long. Unfortunately, this is making the affected a new, second-class group of victims; they will now have to wait at least until March to see the detail of that regulation, and then probably up to the end of 2025 before realistic payments start to come through. Why this long delay? Why have the Government not engaged with the affected since this happened to explain why there are delays, and will the Minister give them cast-iron assurances that they will not be further delayed than the statement that he has just made about them being paid fairly early next year?

Urgent dialogue is vital, because these delays are causing real hardship for dying affected persons who have no chance of interim payments because of the delay. One is the mother of a child sandwiched between her infected father and child. She has had to give up her whole life to care, having already lost her father and mother young. This mother and her husband are very ill; they need the interim payment for care to relieve their suffering. Then there is Helen, an affected person who is already in the system and who is clearly entitled to payments. She is terminally ill with stage 4 ovarian cancer. She has been told that she is unlikely to survive the publication of the second regulations, let alone their anticipated rollout in 2025. For her, an urgent interim payment would provide funds for her to be able to pay more for care and support than she can afford now. Later will not do.

Sir Brian Langstaff repeatedly made the argument in his second interim report and his final report that interim payments are due because so many are becoming ill and dying. Will the Government now look at permitting emergency payments for people such as Helen who were promised, back in May, that payments would be rolled out by the end of this year, alongside the infected?

There are also worries about some of the details in Sir Robert Francis’s scheme, published in July. Some of them may not be substantiated, but the fact is that the victims cannot get answers. Around 1,993 bereaved families are still left without an interim payment and no information about when one will be made, because their loved one died without a wife or a partner, and those people I have spoken about who are not wives or partners are excluded from this first tranche. This includes grieving elderly parents of dead children, or children who had to abandon their careers to look after dying infected parents because there was no care from the state. There is also a very technical question—I promise I will not go into much detail—about which pot of redress an interim payment will be deducted from for these affected people getting payments. Will it be from the infected person’s estate or the total for the widow’s own estate? I say again: when will there be an update for the affected group of victims?

The care awards outlined in July also prejudice the bereaved; 25% will be deducted from all the estates of the deceased, on the argument that families were not professionals and this would have been taxed. I asked the noble Earl, Lord Howe, about deductions for support during the passage of the Victims and Prisoners Act. I recognise that it is a complex matter, but it seems that, once again, the Government are giving with one hand and taking away with another, because there is no agreement to credit these unpaid carers the national insurance that they had while they were carers. Yet recognised unpaid carers are usually credited with national insurance credits for the period when they were unpaid carers. One affected victim asked:

“How can they justify forcing women, particularly, to face the horrors of caring for an infected blood victim because they failed to provide care and support in the first place, leaving us with PTSD and depression, and not only to refuse to recognise that personal injury but also to try and pay us less than ‘professionals’?”

Can the Minister say if the proposals about the 25% deductions are true?

Some affected persons have also made FOI requests to the Cabinet Office to understand how these decisions are made, including under the public sector equality duty, but the Cabinet Office has refused them. This should be a major alarm call to the Minister: every further refusal compounds the seeping away of trust in the scheme for this group of people. What will the Government do to ensure that they keep affected persons well informed? One affected victim said to me:

“I do hope that bereaved families are not going to be long-grassed yet again. It’s nearly two years since the recommendation that interim payments should be paid to unrecognised estates and no one has even been allowed to register and/or enable the government to assess actual as opposed to feared cost”.

The Paymaster General said to the House of Commons on 26 July:

The infected blood scandal is one of the gravest injustices this country has seen. I want to end by paying tribute to the courage and determination of the victims of this scandal—those infected and those affected who fought so hard for justice”.—[Official Report, Commons, 26/7/24; col. 925.]

It is extremely worrying not only that payments to “those affected” have been delayed but that those people are invisible in these regulations. This is now the two-tier system that Sir Brian said must not happen. It threatens their well-being and support. They are entitled to urgent interim and full payments but, at the moment under these regulations, the affected do not even exist. I beg to move.

[Earl Howe (Con)]

My Lords, I am grateful to the Minister for introducing these regulations, which, as he has explained, fulfil one element of Sir Brian Langstaff’s carefully calibrated recommendations for establishing an infected blood compensation scheme, both as set out in his inquiry report and as amended in the light of the engagement exercise carried out by Sir Robert Francis in June. The regulations we are considering relate specifically to those individuals directly or indirectly infected by contaminated blood, blood products or tissue. Still to come at a future date, as we have heard, are regulations to extend the scheme to those who, in various ways, have been affected by the infected blood disaster; and I shall come back to that issue in a second.

Knowing, as I do, how the detailed architecture of the compensation scheme has been devised, based as it is on Sir Brian’s recommendations, and on the careful and considered advice to Ministers given by Sir Jonathan Montgomery’s expert group, I do not argue for a second with either the appropriateness of the eligibility criteria or the proposed category headings under which compensation is to be awarded. I have some questions, however.

The product of Sir Robert Francis’s engagement exercise was a total of 74 recommendations for modifying the detail of the compensation scheme, as previously announced. Of those 74 recommendations, the Government accepted 69. I have to be candid and say that I was very surprised by how high that number was, since I did not think it likely that either Sir Jonathan Montgomery or my right honourable friend the former Minister for the Cabinet Office would have neglected to take account of any aspect of harm caused by infected blood, or misjudged the appropriateness of the levels of compensation under each category of harm. However, my being surprised is not the same thing as saying that I have any issue with the Government’s decisions on this score: I am quite sure that they will have done the fair and decent thing. In an important sense, the fact that there were so many recommendations for modifying the scheme goes to demonstrate only how worthwhile the engagement exercise was. We can be glad of that.

What nags at me, though, is a worry about complexity. The Secondary Legislation Scrutiny Committee noted this complexity and criticised the Explanatory Memorandum to the regulations for what the Committee saw as a failure to explain clearly either the basis of the compensation scheme or the practical aspects of the compensation arrangements. Those criticisms are regrettable, but to my mind they highlight what I feared might be a consequence of accepting 69 modifications to the scheme, which was that these would serve only to accentuate the complexity already built into the scheme architecture. It is surely axiomatic that the more complex the arrangements, the more likely it is that accurate and timely payment of compensation will be put in jeopardy.

There is one obvious example where this might be the case. The Government have agreed that those people registered with the infected blood support scheme will continue to receive regular support scheme payments for life, running in parallel with compensation payments from the Infected Blood Compensation Authority. On the face of it, having two channels of funding as opposed to a single channel runs the risk of both error and delay in delivering to people the money due to them. What reassurance can the Minister give me on this?

There is another, quite different, example of where delay could occur. Sir Robert Francis’s recommendation 18, which the Government appear to have accepted, was that, under the injury impact award heading, not enough attention had been paid to psychological illness as opposed to emotional distress and anxiety.

20:00

First of all, am I right that that recommendation has been accepted? If so, how will any assessment of someone’s psychological illness and the severity of such illness not interfere with the timely delivery of compensation to that individual?

The Government have further committed to provide a supplementary additional autonomy award of up to £15,000 to those subjected to unethical medical research, such as the haemophiliac children at Treloar school. It is not easy to see under this heading how an objective comparison can be made between the severity of person A’s loss of autonomy and that of person B or C. If severity is an issue to be assessed in this context, how can the harm caused by unethical research be categorised into different bandings? Again, will assessments of this nature not cause unwanted delay in quantifying final payments? More broadly, how will any refinement of severity bandings—justifiable as those refinements may be in their own terms—not act as an unintended brake on the final determination of someone’s compensation award?

Reverting to the more general criticism around lack of clarity in the Explanatory Memorandum, do the Government plan to publish a more detailed explanation of the compensation scheme after the regulations have been approved? If not, is the Minister satisfied that those in the infected blood community understand, in sufficient detail, the type and degree of compensation they may be entitled to?

In the end, of course, what matters most is that compensation is delivered promptly and efficiently to those eligible to receive it, and in the correct amounts. Can the Minister reassure me that the promised timescale for commencing compensation payments by the end of the year is still realistic? I hope he can.

Finally, I will ask the Minister about the regulations still to come relating to those affected by the infected blood disaster. Having myself been approached by more than one such individual, and having read the Langstaff report, I am left in no doubt of the terrible consequences that this disaster wreaked on them as individuals: partners who could not have children; babies taken into care; children denied siblings; wives and partners enduring years of no social life; all alongside the acute anxiety this long nightmare has caused them.

The Government have said they will bring forward the necessary regulations for this large cohort of people when parliamentary time permits. However, as the Minister knows, those people see time moving relentlessly on and some are very worried they may not live long enough to receive the compensation promised to them. I am the first to recognise how much work is involved in collecting and collating the names and other information necessary to determine eligibility under the heading of “an affected person” and how complicated the regulations will inevitably have to be. However, without stealing the thunder of the noble Baroness, Lady Brinton, I press the Minister on this issue: is it possible for him to go further than the words “when parliamentary time permits” and give us a sense of a more precise timescale for laying the second set of regulations? Can he also shed a clearer light on when payments are likely to be made to the qualifying individuals?

[Lord Ponsonby of Shulbrede (Lab)]

I thank both the noble Baroness, Lady Brinton, and the noble Earl, Lord Howe, for their very thoughtful discussion of the regulations. I recognise they have both had long experience of these issues. As the noble Baroness, Lady Brinton, said, the three of us were involved in the passing of the Victims and Prisoners Act, which was a precursor to these regulations.

In response to the very last question of the noble Earl, the Government are aiming for a second set of regulations to be in place—regarding affected people—by 31 March 2025. It is our intention that people who are affected can start receiving payments in 2025. That was in my original speech and that is the Government’s commitment.

I will make a general point before I start trying to answer some of the individual questions. It is in the best interests of everybody that the House continues to work collaboratively on this issue—both for infected and affected people. All sides of the House acknowledge the British state has failed the victims, and these regulations are a step on the road to addressing the infected victims.

Of course I will agree to meet the noble Baroness, Lady Brinton, and the noble Earl, Lord Howe, if he so wishes. I will write with detailed answers if I fail to answer any of the questions—no doubt I will fail to answer some.

As the noble Earl quite rightly said as he introduced his comments, these regulations are fulfilling one element of Sir Brian Langstaff’s report. A lot of the questions have been about the second element: the affected people. As he rightly said, 69 of the 74 recommendations were accepted.

On the bulk of the speech by the noble Baroness, Lady Brinton, which was about the affected people, the timetable available to develop these regulations was necessarily limited. The regulations prioritise people who are infected as a result of the infected blood scandal. Where people have sadly died, the recommendations make provisions for claims under their estate. This ensures the Infected Blood Compensation Authority can start delivering the compensation scheme for the infected, as per its statutory function.

The Government’s decision to split, and therefore sequence, infected and affected regulations was taken with the reassurance that it would allow orderly implementation of the legal framework without impacting or delaying the delivery timetable for payments to infected and affected victims. Subject to parliamentary approval, the Government are aiming for the second set of regulations to be in place by 31 March next year, as I mentioned, with an expectation of beginning payments by the end of the year.

The noble Baroness, Lady Brinton, also asked about the eligibility of affected siblings and children. The scheme’s definition of siblings is based on the recommendations made in Sir Robert Francis’s compensation framework study. The definition recognises the likely heightened impacts on a sibling living with an infected person during childhood. This is not to dismiss or deny the suffering of those who were adults when their siblings were infected. Individuals who were adults when their sibling was infected may be eligible for compensation through the scheme as a carer. Siblings will be eligible where under the age of 18 they lived in the same household as an infected person for the period of at least two years after the onset of the infection. Similarly, the scheme’s definition of children of the infected person is based on the recommendations made in Sir Robert Francis’s compensation framework study. The scheme recognises the likely heightened impact on a child who was under 18 while living with a parent who was infected.

I hope that provides some clarity to the noble Baroness. However, I will also acknowledge the examples she gave of the terrible effects on affected people and the terrible experiences, some of which she spoke about. It is absolutely not right to suggest that affected people are somehow second-class citizens. That is not right; it is just a practical decision which the Government have made to try and progress these matters as soon as possible. These regulations are for the infected group, but I have set out as clearly as I can what the Government’s intentions are for the affected group.

The noble Earl, Lord Howe, spoke about the complexity of regulations and the Explanatory Memorandum. Work is under way on a second set of regulations. We will take on board the committee’s helpful feedback when drafting the Explanatory Memorandum for those regulations. We recognise the point made by the SLSC on the complexity of these regulations, but it is absolutely the Government’s intention to carefully consider the committee’s report and findings.

The noble Earl asked about the two channels of funding: the core route and the IBCS route. This is an additional level of complexity, but it was recommended by Sir Robert Francis because it was the wish of the infected group that the existing method of funding should continue. Because we accepted that recommendation, that inevitably adds to the complexity.

The noble Earl also asked about psychological illness, and in particular whether recommendations were accepted by the report. I am afraid I do not know the answer to that, but I will write to the noble Earl and the noble Baroness about it.

The noble Earl also raised Treloar’s school and unethical experimental research on certain young children. It is absolutely not the intention that this particular scandal should lead to any delay in the rollout of infected or affected compensation, but we recognise the particular, scandalous nature of what happened to those victims.

In conclusion, we regard the timetable as realistic. In opposition, we worked constructively with the then Government, and we have continued working as practically as possible to try to move the timetable forward. All of us across this House must continue to work collaboratively. These regulations ensure that we can finally deliver compensation to those who fought so hard; they deserve nothing less. I beg to move.

[Baroness Brinton (LD)]

My Lords, I thank both the noble Earl, Lord Howe, and the Minister for their contributions to this debate. We are all broadly on the same page. I do not think there is a difference on the principles of moving ahead, and certainly absolutely no intention on my part to try to slow down or block the approval of the regulations today.

I will not go through the arguments we have all made, but the key thing the Minister did not cover was the issue of communication, which seems to me to be the most important thing moving forward. If there is confusion and distress on the one hand, and complexity and a large number of recommendations being modified on the other, it is absolutely understandable that the affected and the infected may have concerns about what is going on. I really hope that when we meet, the Minister will talk to us about what he plans to do.

I pay personal tribute to the noble Earl, Lord Howe, for the way he worked with the communities over the years. That baton has clearly been handed over to the other side of the House. We need to rebuild trust; there are a lot of very distressed people out there at the moment. With that, I beg leave to withdraw my amendment.

Amendment withdrawn.

Motion agreed.