Helpline Manager, Samantha May, has run our helpline for almost 20 years. Taking calls from thousands of members of the infected blood community in that time, she was able to offer unique insight into the scale of the contaminated blood scandal.
Here, Sam reflects upon the end of the Infected Blood Inquiry, what she’s learnt from the community and the work of the helpline over the years.
When the helpline started in July 2004, the majority of calls we had were from people who had injected drugs when they were younger, sometimes just once, but decades later were getting diagnosed with hepatitis C.
But little by little, we started getting calls from people who had received infected blood through transfusions they had had before the September 1991. Many of them were seeking our support to access The Skipton Fund; a payment scheme set up to support people who had received infected blood with financial assistance from 2004.
Many applicants were unsuccessful because they couldn’t find medical records of their transfusions or found the process so difficult they didn’t bother to appeal if they were turned down.
Many callers who had only just been diagnosed believed they had contracted hepatitis C through sexual transmission, due to the poor information they had been given by their GPs. When we explored other causes they may have had, it started to become clear that many of them had had transfusions before September 1991.
Callers were shocked that they had gone so long without diagnosis; that they hadn’t been actively tracked down by the NHS and called forward for testing; and that no one had ever warned them about infected blood decades before.
Many callers experienced incredible stigma, particularly those who had been diagnosed back in the 1990s. They were given little or no information about their condition, and often information that was just plain wrong. It soon became clear that this resulted in many myths about transmission which had a huge impact on personal relationships and their mental health.
In the early days of the helpline, we offered a lot of emotional support. The old interferon treatment had a physical and mental toll on lots of people. People called, wanting to speak to helpline staff who had experienced the treatment themselves.
We did everything we could to support people to complete the course of treatment, as it was their only chance of clearing the infection at the time. It was not until 2015 with the advent of the direct acting anti-virals that treatment became easier, quicker and more effective.
After the time the Infected Blood Inquiry launched in 2018, awareness of blood transfusions as a risk for hepatitis C greatly increased and the majority of our calls since then have been from this community.
We encouraged people to get tested if they had a transfusion, and if they had already been diagnosed with hepatitis C, supported them to give evidence to the Inquiry.
We also started to take a much more proactive role in assisting people with finding records and making claims to the blood support schemes that replaced The Skipton Fund. Many were unaware they could claim, had previously tried and failed, or were unaware of the range of additional payments they may be able to access once on the scheme.
By the time the Inquiry started, we had already spoken to well over 4,000 people from this community over a 15 year period. We were very well tuned into the issues and problems people had faced and the impact their infection had had on both them and their families.
It was incredible, and very rewarding actually, to finally be able to make real use of this knowledge and share these issues with a team of people who were so dedicated and determined to find out the truth.
The Inquiry team were genuinely and wholeheartedly interested in the many issues people had been facing. It made sense of all the work we had been doing over many years, and it enabled and empowered us to put that knowledge to good use.
I will never forget attending the early days of the hearings when so many people from the community came forward to share their stories, often for the first time. It was incredibly moving to hear people voice their stories, in their own time, with sensitive questioning by the Inquiry.
The Inquiry gave people a forum to be truly heard, included, acknowledged, supported – and importantly linked in with so many others and build a community. It was clear from the start, with Sir Brian Langstaff’s opening comments, that they were finally being taken seriously and that action would be taken to address the contaminated blood tragedy as a result “without fear or favour”.
Many witnesses took time to acknowledge and feedback on the support the helpline had given them in the past; whether in their written statements, or in the hearings themselves which was extremely heart-warming. It was so rewarding to know that we had been able to make a difference on their journey.
But it was also incredibly saddening to remember the people who had died before the Inquiry, and those we had lost contact with over the years. There are so many people we’ve spoken to who were so shamed by their experience that they just disconnected, or others still, who had applied to The Skipton Fund in the early days and were turned down due to a lack of evidence and then just closed the door thinking that was the end of it.
There were indeed so many lovely, wonderful callers who have since passed away and I personally feel angry that their experiences, and their number, will never be included in the scale of this tragedy. I always keep them in mind and have added many messages to the Inquiry memorial, to make sure they are included in some way.
Presenting evidence at preliminary hearing was outside my comfort zone. However, from the very start, both the Inquiry team and the infected blood community were so helpful and supportive. The difficulty was the responsibility of articulating all we had heard over the years and I endeavoured to be as thorough as I could be in our written statement. I am grateful to the Inquiry team and later, our legal representatives, Leigh Day, for their guidance for making it an easier process.
Challenging though it might have been for us as an organisation to represent people in this way, personally I was in awe of the bravery and dignity of all of the individual participants who spoke out and who revealed highly personal and sensitive issues. It was so important for them to all be heard publically, and I know shocking for those who were hearing these stories for the first time.
As the Inquiry started to wind down this year, there was definitely an increasing sadness and anxiety. I think we were all surprised by the depth of feeling and loss after KC Jenni Richards and Sir Brian Langstaff made their closing statements.
Of course their work is continuing in the meantime, but the hearings are now over, a big loss for many in the community they provided an opportunity, a cause, a safe and understanding place for people to come together.
I hope, and trust, that Sir Brian Langstaff’s final report in the Autumn will be able to articulate a clear understanding of what went wrong all those years ago. Lessons must be learnt and justice for all those affected by the contaminated blood scandal must be delivered.
Compensation absolutely needs to be made, and swiftly, to all those who have been infected and affected and also financial assistance widened, to include many groups who currently remain outside the criteria to access it.
There needs to be easy access to a wide variety of psychological support in place to address the many different mental health impacts that this community have endured, to help them move forward and have closure.
Most importantly, responsibility needs to be taken and sincere and thorough apologies made.