On Friday 21st May, Secretary of State for Health and Social Care Matt Hancock, as well as senior officials, gave evidence to the Infected Blood Inquiry. In this blog, Samantha May, Helpline, Information, and Support Service Manager at The Hepatitis C Trust has described the evidence given and the response.
Of the variety of calls we get on the helpline from people infected and affected by hepatitis C, around a fifth of them over the last 6 months alone (275) have been in relation to problems faced by people dealing with the various UK Blood Support Schemes. These are mainly specifically related to the English one (EIBSS), which the day’s hearing was focused on. Evidence was given by Brendan Brown (Director of Citizen Services at the NHS Business Services Authority), William Vineall (Director of NHS Quality, Safety and Investigations at the Department of Health and Social Care) and Matt Hancock (Secretary of State for Health).
The main problems we hear about, are from those newly diagnosed, who come to understand that they were infected via NHS blood and blood products many decades ago. Either from their own research, their consultants, or from calling us, they then become aware of the financial support they are entitled to claim.
We support and guide them on how to claim. Unfortunately for many this is a difficult task, as the key to a successful application will be finding medical records to demonstrate they have had a transfusion, within the NHS, before September 1991. Often they will find these records have been lost or destroyed. They must then begin looking for other evidence, often a long and arduous task. In the absence of medical records, a decision should be made by the medical assessors based on the balance of probabilities, but many of the callers we speak to, report being turned down in this situation as it is very difficult to prove.
One can only imagine how it feels for someone to be diagnosed with a serious and potentially infectious illness, decades after being infected, after a substantial part of their quality of life has been affected, and for which they are likely to have received an earlier misdiagnosis. Many then get a subsequent diagnosis of cirrhosis or liver cancer due to having had such a long-term infection.
To find out you are eligible for financial support only to then get it turned down due to a lack of medical evidence through no fault of your own is devastating.
And even those who are able to successfully claim (whether recently, or many years ago if they were previously registered for support from the UK Blood Support Scheme’s predecessor, The Skipton Fund) are also confronted with a variety of problems in accessing certain funds, discretionary grants and other payments to which they are entitled, and there is no provision for loss of earnings, or for carers.
And others too, are ineligible claim at all – for example parents of children who died of hepatitis C (and/or HIV), children whose parents died, those who were infected with hepatitis B, those who may also have injecting drug use as a possible risk factor (this was described as not “fatal” to their ability to claim although we have yet to speak to a caller who was able to make a successful claim in this situation) and others who believe they were infected with hepatitis C months or even years after the cut-off date of September 1991.
Aside from giving an interesting overview of how the scheme operated, the day’s hearing focused on drawing attention to many of the issues and anomalies that people encounter in dealing with the scheme/s and counsel were able to highlight the many inconsistencies there are.
They also drew attention to what appeared to be a lack of understanding on the wide range of needs that people infected and affected had. Despite being referred to as a support scheme, little or no support is given and it would appear that staff are simply there to administer payments in an efficient manner, if all the appropriate boxes have been ticked.
The big news of the day was the attendance of Secretary of State for Health and Social Care, Matt Hancock. Confirming comments made by Paymaster General Penny Mordant at the All-Party Parliamentary Group on Haemophilia and Contaminated Blood on Thursday, Hancock made it clear to beneficiaries that he would ensure support payments would continue, something that has long caused anxiety for people.
Jenni Richards QC asked: “Is that your expectation, Mr Hancock?” And he replied, “Yes, I would absolutely give a commitment to anybody receiving a payment, any of the beneficiaries infected or affected, that I would expect that to continue for their lifetime, absolutely. That’s my expectation. I would say it goes without saying, but sometimes these things need to be said.”
He also confirmed that compensation would be paid if the Inquiry recommended it, and that this would be facilitated as swiftly as possible, hence the recent appointment of Sir Robert Francis QC to create a compensation framework, see here.
He also took time to speak directly to those infected, and affected, to apologise:
“Well, their loss is important and I mean it comes to the heart of the problem, doesn’t it, that many, many, many people feel that their lives or lives of their loved ones were seriously harmed and, in many cases, cut short by action that was recommended by the state and feel that there hasn’t been an acknowledgement of that, and one of the things I want to do today is acknowledge that. I know that an apology was given… by David Cameron when he was Prime Minister… which I reiterate…on behalf of the Government, I’m sorry… there’s more than that, which is acknowledging not only that I’m sorry for what happened and that this happened in the first place but also then how people feel that they’ve been treated since, because I know that that is important, and I know it’s another wrong that needs to be put right … I leave it to the Inquiry to answer the clinical question of whether there is clinical psychological harm, but what I can absolutely do is acknowledge the pain and suffering that has gone on for far, far too long”
And on closing he advised “And so, as well as reiterating the apology, I really want to make sure that you know that we in the Government support the Inquiry to go everywhere and find every detail and hear all of the voices and to find as many answers as possible, and I’ve instructed my Department to do that and also to improve the financial support and to create parity as much as we possibly can. And I hope that this Inquiry finally brings about the closure that many people are seeking as well as, no doubt, making recommendations on the practical changes that we can bring about.
“I’m determined to make improvements even whilst the Inquiry’s ongoing but then we’ll also listen very carefully to the Inquiry’s conclusions. This is a tragedy that never should have happened and we owe it to all of those who are infected and affected to make sure that it never happens again and we learn all the lessons fulsomely”.
Whilst news of the uplift in payments, parity, compensation, the apology, and the acknowledgement of the harm caused were all welcome, some of those attending expressed dismay at all three speakers’ seeming lack of depth of awareness and understanding of the wide variety of issues that people accessing the schemes face.
There was also much frustration that still so many particular groups of people will continue to lose out on support payments despite the positive changes and plans overall; Hancock confirmed, for example, that outside the compensation review there is “no current plan to consider extending the scheme to wider categories of the bereaved”. There was also concern that compensation will still be a long time coming, with the Inquiry having to conclude and report first, something not expected to happen until late 2022 at the earliest.
With one person who received infected blood dying every few days, it will still come too late for many.
You can read the transcript of the days hearings here and video footage of the day will be posted on the Inquiry’s website in due course.