Infected Blood Inquiry

Baroness Featherstone Excerpts

Tuesday 15th October 2024 Lords Chamber

[Baroness Featherstone (LD)]

My Lords, I want to talk about the affected rather than the infected. Listening to the noble Lord, Lord Lansley, sparked something in my memory of when, I believe, I came to him to talk about this. I had entirely forgotten about that, but I know I felt very disappointed after I met the noble Lord that day. I cannot remember why exactly, or what he said, so I will go back to my notes to find out.

As I said, I want to talk about the affected. The distinction between those who are infected and those who are affected, such as family members and caregivers, raises important ethical considerations regarding compensation. While pecuniary support addresses financial burdens, it does not really touch the broader impacts on affected individuals, and today I seek assurance on how the compensation for the affected is going to be assessed.

Sadly, as I have done each time I have spoken on the contaminated blood scandal, I have to declare an interest. My nephew, one of my sister’s twin boys, was a haemophiliac, was infected with hepatitis C, was exposed to CJD and died aged 35, leaving his partner and a baby daughter of 10 months.

I want to speak about the affected, the eligible persons, and would like the Minister to clarify and confirm if she can, on the record, that the affected will be compensated in the way Sir Brian Langstaff made clear that they should be in the inquiry’s conclusions. I am indebted to the Hepatitis C Trust. I do not know whether anyone else in this Chamber saw the webinar that it produced on the Government’s work, which is on its website. The trust is to be congratulated on how open and well publicised it is. It is a masterclass in what is quite a complicated compensation scheme to follow.

I am sure that the Minister agrees that it would be unforgivable and unconscionable at this stage, when families and victims have fought for decades to get the inquiry and were so relieved by its findings, if there were to be any retrenchment or effort to reduce the financial obligation by sidelining the affected. Sir Brian seemed concerned that this might be the case when he said of the Government’s offer and direction of travel for the affected:

“A claim as a dependant focuses instead not upon the personal losses of the affected person, nor upon what they may have suffered emotionally, but upon the benefits the deceased would personally have provided in money, or money’s worth to the claimant as part of a family. A dependency claim is a derivative claim, rather than one which recognises the person as an individual”.


Can the Minister clarify whether Sir Brian is right in his concern about a dependence claim as described?

Families of the infected did not necessarily have any financial support from their deceased loved one or living victim, but their lives were fundamentally affected by the support that was needed over many years throughout their lives and prior to death, and the support needed after death by siblings, parents and children. The loss was never just financial. I saw the emotional toll on my sister and her husband, outside the fight that she carried on for decades to get the inquiry, to get justice. We—I speak of the community—all knew that there was a disgraceful cover-up and I fear that some in the Government and the Civil Service did, too.

I cannot begin to describe the burdens, trauma, emotional toll and fear, let alone the accommodations, challenges and costs, of having a child who not only was a spontaneous haemophiliac but was infected with hep C and exposed to CJD. To give an example of how terrible everything was, when he was told that he had been exposed to CJD—he was an older child at that point—there was no warning that he might be told that. His parents were not there. No one was invited to support him. There was no support given for what at that point was a terrifying prospect.

Because of the hep C, he had to go through most dreadful treatments. Now, thank goodness, there is a route for medical treatment of hep C, but the treatments that were in play then made him sick for months on end, totally disabling him from being able to work for long periods while he battled the hep C. The health service kept putting him on new treatments to try to cure the hep C. The last treatment that he tried failed. They all failed. It was the hep C and its treatment that killed him, not being a haemophiliac.

My sister and her husband, Nick’s parents, spent his life supporting him, getting him to and from hospital all the time, looking after him when necessary, soothing him in his distress, pain and fear. He was a musician, a guitarist, a brilliant songwriter and a singer in several bands. As I said, he left a partner and a 10 month-old baby girl. My sister and brother-in-law had to support her and the baby for many years, and not just financially. Thankfully, the Government seem to recognise the loss of a partner and she has now received the interim payment, but of course nothing can replace a partner and the loss of her daughter’s father.

Nick’s twin’s life and my sister and brother in law’s lives have—as with so many families in this community—been woven around supporting Nick when alive. Neve, who was a 10 month-old baby, is now a lovely young girl of 12, and she will never know her father. These are the affected: affected materially, emotionally, in terms of time and the loss of their right to a family life—everything.

I hope I am wrong and the Government are heeding all Sir Brian’s recommendations, because the Government forced families to provide care—in time, finance and emotional hell—by failing over decades to take responsibility for their malpractice, lies, deceit and cover-up. Over decades, there were hundreds of absolutely useless meetings where the infected and the affected were made to feel like supplicants, treated rudely and carelessly and fobbed off over and over again as if the Government could not wait to get rid of them. It would simply be another blow and another pushing away of responsibility if the Government proceeded to ignore Sir Brian on setting levels of compensation solely on dependence and derivatively.

So, yes, there was no pecuniary loss because Nick had supported his parents. It was nothing to do with that; he never supported his parents as he could barely work. That is not the point Sir Brian was making. This is about the costs in time and money and tears and loss and, post his death, the costs of the support that had to be given to his partner and baby daughter. It was nothing to do with any money that he might have been able to give them. So can the Minister put on the record that compensation will include consideration of all losses, emotional damage and the loss of the right to a family life by those who cared for their infected loved ones? Given the hours of care, the support given, the fight to try to get Nick cured of hep C, the terrible experimental treatments that tortured his body and his psyche, the worry, the heartbreak and the time, it is the least they can do. Pronouncing a duty of candour going forward is great, but it will not help the loved ones of those who care for or have cared for those infected.

I wonder whether the Government have any idea what an amazing day it was when Theresa May, now the noble Baroness, Lady May, announced that she had commissioned an inquiry after the decades of lies and obfuscation; it was an amazing change after decades of begging. How miraculous it was to have such a chair of the inquiry: the extraordinary, the just and the brilliant Sir Brian Langstaff. The findings of the inquiry gave the community, at last, a sense of justice in the uncovering of the truth and compensation for the pain and the fights and the consequences of the hideous scandal of giving haemophiliacs and others contaminated blood, knowing about it and covering it up. In France, Ministers went to prison. Are the Government looking at whether any criminal charges may be brought?

There is much good work and planning going on, and I congratulate the Government on what they are doing so far to deliver the compensation schemes —particularly for the infected, and their estates if they have passed on, and for their partners. However, thus far it has developed less clearly, as the Minister said, in terms of the affected. Their compensation must—as Sir Brian indicated—encompass the emotional and psychological impact; the time in care giving; the loss of quality of life; the anxiety; the hell of watching the torment and the pain; the need to recognise the suffering of those who love the infected; the loss of the right to a family life; and the years of worry and grief. I beg the Government: do not fall at that last hurdle; do not penny-pinch; do not obfuscate or wriggle out of true obligation. This really is the moment of reckoning.