Infected Blood Inquiry

Baroness Keeley Excerpts

Tuesday 15th October 2024 Lords Chamber

[Baroness Keeley (Lab)]

My Lords, I am pleased to contribute to this debate because while I was the MP for Worsley and Eccles South I spoke a number of times on the NHS contaminated blood scandal, and was a member of the all-party group on contaminated blood, ably chaired by my right honourable friend Dame Diana Johnson MP. I acknowledge the work done by the all-party group and by noble Lords in keeping the issues and concerns of those infected or affected by this scandal so high on the political agenda. As an MP, I represented five families or individuals who were infected or affected by the NHS infected blood scandal. I know that they were helped by knowing that Members of Parliament and noble Lords were supporting their cause. I pay tribute to the powerful speech that we heard today from the noble Baroness, Lady Featherstone.

As my right honourable friend Nick Thomas-Symonds said in the Commons on 2 September:

“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 inquiry’s report shed light on the trauma inflicted on thousands of people across the country. The voices of people who are infected and have been affected have gone unheard for far too long, which has compounded the trauma”.—[Official Report, Commons, 2/9/24; col. 74.]


I welcome the opening comments by my noble friend the Minister and the Labour Government’s confirmation that it is the intention to deliver a comprehensive compensation scheme at the earliest possible opportunity. I understand that the Government will bring forward another set of regulations to enable compensation for affected people and to provide supplementary awards, but there is no certainty around the dates for that, and I will raise a concern about this later.

I want to reflect on the cases of my former constituents and the issues they raised with me. One former constituent was a child when they were infected with hepatitis C through contaminated blood products used at the Royal Manchester Children’s Hospital. The hepatitis C caused cirrhosis of the liver, and as an adult they were forced to use all their stage 2 compensation payment of £50,000 to pay for the treatment Harvoni. This was used to treat the virus load of hepatitis C but was not available for NHS patients, and there was uncertainty about whether it ever would become available to them. They should not have had to use their compensation to fund medical treatment for a virus they contracted while receiving NHS treatment as a child. I hope that there will be very specific redress for that.

The details of the cases I have had raised with me are heartbreaking. While no amount of money can compensate for the lives lost and the shattered futures, the compensation proposed now starts to represent a recognition of the scale of suffering that this scandal has caused, both to the infected and the affected.

I turn to the damage caused by the stigma surrounding the illnesses caused by contaminated blood. In his latest report, Sir Robert Francis confirms that psychosocial experts have reported that many of the impacts of this scandal have been suffered by both infected and affected people, including the distress caused to individuals and families by stigma. This is an important point, and it is the case that the gravity of the stigma experienced led to social isolation for many individuals and their families.

The father of a former constituent died in 1995 following treatment with infected factor 8. The constituent told me that she and her mother could never grieve properly for him because of the stigma surrounding HIV and AIDS at the time. In another case, Nora Worthington, mother of my former constituent Claire Dixon, was infected with HIV through a routine blood transfusion in 1982. She died of an AIDS-related illness in 1993. Claire Dixon told me that during this time her mother endured

“a catalogue of soul destroying, humiliating neglect and ultimately alienating experiences”.

The stigma and ignorance associated with HIV compelled Nora Worthington to protect those she loved and keep her diagnosis secret. It is distressing to note that, as Nora Worthington was a single parent, there has, up to now, been no payment of compensation to her daughter Claire and her brother Stephen. They have had a 31-year battle for justice for their mother.

It is positive that Sir Robert Francis’s report recommends that the social impact award for affected persons be reconsidered with an increased figure. However, there is concern among the affected community—we heard about this earlier in the report—that the regulations laid by the Government in August did not provide legislation for those affected, such as bereaved family members, to receive compensation, or in fact supplementary awards for those infected. I understand that a further SI is needed and that that will be laid in 2025 when parliamentary time allows, but this has caused uncertainty and worry. Can my noble friend the Minister tell us what progress has been made on this second set of regulations?

From this month, families will start to make applications through separate support schemes for interim payments of £100,000 to the eligible estates of those infected people who have died. Many of the eligible estates are those of people who died many years ago—often several decades ago. Applicants will require legal help in obtaining probate or letters of administration, and in dealing with deceased executors and other legal matters. Can my noble friend the Minister tell us whether funding for legal help will be available so that applicants are not expected to take on debt to fund their applications?

As campaigners, the Dixon family wanted to raise some extra concerns in the following points. First, they point out that some living infected individuals have been excluded from existing financial support schemes. The chronic hepatitis B infected and those infected with contaminated blood stocks after the September 1991 cut-off date have never received any financial support at all. They point out that despite this being a relatively small number of people, many of them are very ill as a direct result of contaminated blood, with conditions such as cirrhosis and cancer. Despite Sir Brian Langstaff’s recommendation in April 2023, a typical HBV-infected individual has lost around £100,000 in financial payments from support schemes, ahead of any compensation they may receive in future.

Secondly, the Dixons believe that carers are given insufficient financial recognition. They point out too that individuals with missing medical records are seriously at risk of not receiving justice from the Infected Blood Compensation Authority and having their compensation applications dismissed due to not having appropriate paperwork to prove that transfusions were given. I should say to my noble friend the Minister that it has seemed to me in dealing with some cases that quite a number of people are affected by missing medical records.

Lastly, the Dixons point out that the Infected Blood Compensation Authority is not currently seen by campaigners and those infected and affected as a true arm’s-length body, because it is staffed by officials seconded from the Cabinet Office. It is important we understand that, after so many years of being denied justice, there remains a lack of trust in government. The perception that it is now civil servants being tasked with designing the regulations and administering, assisting, operating and supervising the compensation schemes does not help with that. There should be the fullest consultation with those infected and affected to overcome such perceptions.

People infected and affected by contaminated blood have been through enough. It is imperative that the route to receiving compensation is as simple and sympathetic as possible. The payment of compensation to victims must be a recognition of the suffering of those people infected and affected by contaminated blood, which has been a shameful chapter for our NHS.