My Lords, I start by recognising that one of the people who wanted to speak to this amendment is not in his place. The noble Lord, Lord Cormack, told me he was going to speak, and his death over the weekend leaves a large gap, not just in Parliament but for the victims of the infected blood scandal and their families, whom he supported.
He said in the Commons on 13 November 1989:
“No one can give back to these victims the hope of a normal life that was once theirs. No one can remove the uncertainty with which they and their families live from day to day—the uncertainty of when the bell will toll. If any group of people live in the shadow of death, they do. It is no wonder that their story has been described as the most tragic in the history of the NHS ... I hope that we shall have a full and good answer from the Minister, but whatever he says, unless he agrees to our request, the campaign will go on and we shall not go away.”—[Official Report, Commons, 13/11/89; cols. 153-55.]
Patrick, we shall go on. May you rest in peace.
I thank the noble Earl, Lord Howe, for his letter, and for the meeting we had to discuss this amendment and Clause 40. I hope he will have better news for your Lordships’ House today. It is a pleasure to follow the noble Lord, Lord Ponsonby, on Amendments 133A and 133B, tabled by the noble Lord, Lord Wigley, which talk about payments for the infected blood scheme being arranged on behalf of the UK Government and paid from the UK Treasury. It is right—this scandal has been going on for approaching 50 years, since long before devolution, and therefore it is inappropriate for Scotland and Wales to have to foot the bill for something that is clearly the responsibility of the UK Government.
Clause 40 of the Bill was an amendment laid by Dame Diana Johnson MP in the Commons and it won cross-party support in a vote. It requires the Government
to establish a body to administer the compensation scheme for victims of the infected blood scandal. The clause is the original wording of the Infected Blood Inquiry’s second interim report, recommendation 13, and incorporates recommendations 3 and 4.
My probing Amendment 134 was also laid in the Commons, but, unfortunately, there was no time to debate it. It would ensure that an interim compensation payment of £100,000 is made in respect of deaths not yet recognised—specifically ensuring that, where an infected victim died, either as a child or as an adult without a partner or child, their bereaved parents would receive the compensation payment. Where an infected victim has died and there is no bereaved partner but there is a bereaved child or children, including adopted children, the compensation should be paid to the bereaved child or children, split equally. Where an infected victim has died and there is no bereaved partner, child or parent, but there is a bereaved sibling or siblings, they should receive the compensation payment.
It should be noted that the wording is the original wording of recommendation 12 of the Infected Blood Inquiry’s second interim report. It is also very helpful that both the Welsh and Scottish Governments have written to the UK Government to support the compensation in advance of the inquiry reporting in May. On 18 December last year, the Paymaster General, John Glen, made a statement raising expectations, but unfortunately provided no information on when a compensation body would be established, let alone when interim payments in respect of unrecognised deaths might be made.
Both Clause 40 and this amendment are only the latest attempts to move government—not just this Government but many Governments of differing political parties—into sorting out and paying the compensation that is due to these groups of people, whose lives over the last four decades have been severely affected or destroyed by acts of the NHS, and therefore also by the Government, which used infected blood to treat haemophiliac patients through factor 8, as well as for those receiving whole blood transfusions.
The numbers are grim. Just under 5,000 people with haemophilia and other bleeding disorders were infected with HIV and hepatitis through the use of contaminated clotting factors. Some unknowingly infected their partners. Since then, 3,000 have died. Of the 1,243 infected with HIV, fewer than 250 are still alive. Many thousands who had full blood transfusions in the 1980s and 1990s were infected with hepatitis. Some people may not even know that they were infected as the result of a transfusion.
I thank all the victims and family members who have written to me. I cannot do them and all the different campaigning groups justice in the short time today. They have been victimised time and again by the NHS and by Governments fighting them and all other victims over the years—sometimes, I am afraid, with lies and prevarication. I pay particular tribute to two indomitable women who are still campaigning after 30-plus years. Colette Wintle and Carol Grayson were part of a small group that in 2007 sued four pharma companies—Bayer, Baxter, Alpha and Armour—in
the US, who had used contaminated blood from prisoners to make factor 8, which the NHS bought and used without any warning to patients and their families. The American judge acknowledged that the pharma companies had used infected blood but disallowed the case on a technicality, saying that the duty of care for patients in the UK lay with the NHS and therefore the UK Government. But the Government did nothing.
An independent and privately funded Archer inquiry, which reported in 2009, was followed by Theresa May setting up the full public inquiry, chaired by Sir Brian Langstaff. He has issued two interim reports, with the final report due in May this year. In the middle of all of that, Sir Robert Francis also completed a report on the structure of compensation, which was published in March 2022, with which Sir Brian agrees and which he has built into the recommendations of his second interim report. That report, published last year, is an extraordinary read. No Minister or official can ignore the clear language and recommendations, evidenced by witnesses to the inquiry, that show decades of government and NHS wilfully ignoring their responsibilities and lying to victims and their families.
The Government have also recently announced that Sir Jonathan Montgomery, as the chair of the group of clinical, legal and social care experts, will give the Government “technical advice on compensation”. Unfortunately, this has not helped their relationship with the victims. First, there is concern that this group will also slow down any process of compensation, and secondly, the chair, Sir Jonathan Montgomery, a well-respected ethicist, has links with Bayer, one of the four pharma companies that sold infected blood to the NHS.
Disappointingly, Ministers have recently said in Oral Questions that they will not start until the Government have considered Sir Brian’s final report. We know that it usually takes at least six months for the Government to formally respond to an inquiry report when it is published, so can the Minister tell us whether they will now change this and move swiftly to make the compensation happen, as Sir Brian recommends?
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I want to end with the voice of these victims. It is too easy to talk about the history of the scandal without understanding the reality of their lives. Sir Brian’s inquiry heard Jason Evans’s experience, who was four when his father died from HIV. He said,
“it just marked every aspect of life. And, you know, I’ve now lived my dad’s entire lifespan and I’m sat here. So it’s blanketed my entire existence”.
When asked whether he had ever been offered counselling or psychological support, he said:
“No, never. And I think the thing that is particularly despicable to me is, okay, now I’m 31. But as a child … a four, five, six year old kid, how did I not have bereavement counselling? How was it never offered?”
Lauren Palmer e-mailed me. She says:
“Growing up I was a little sister to two older half-brothers in what seemed like a relatively normal family. Unknown to us, my father was co-infected with HIV and Hepatitis C via his Factor 8 … but my father had also regrettably infected my mother.
In 1993, when I was just 9 years old, both my father and mother passed away from their infections, within 8 days of each other … I was heartbreakingly separated from my two brothers … and my life and my family were completely torn apart …
It emotionally destroys me on a daily basis that both my parents’ lives have not yet been recognised when others (rightly) have. The children and parents of victims are having to fight tirelessly, for decades to be discarded with countless ‘empty promises’ of responses from the government, which have no course for action, it is degrading and greatly disrespectful!”.
Colette Wintle and Carol Grayson also had to face years of illness and the deaths of their husbands. One reported that they were not told that one of the family victims had died. His mother was not permitted by the hospital to stroke his head. Years later, they found out that was because his brain and body parts had been removed, without seeking permission from the family. His brain was finally buried, with his brother, also infected, when he too died as a result of receiving factor 8.
Colette and Carol, along with thousands of other victims, have been lied to, pushed away and denied justice by officials. This is also coming out in the inquiry. No wonder Sir Brian is urging the Government to ensure that they start right now with expanding the scheme to include affected persons, implementing interim payments and moving as fast as possible to a full settlement.
The noble Lord, Lord Waldegrave, had hoped to be able speak today. Like Lord Cormack, he had acted on this in the Commons, and I know he has told the Minister that the Government must follow Sir Brian to the letter or face immense disappointment and dismay.
This Government say they are doing everything at pace for the Post Office Horizon scheme, with most settlements paid in full by August or as soon as possible thereafter. The victims of the infected blood scandal deserve no less.