We are committed to putting the infected blood community at the heart of the compensation claim service. To help with this, we have appointed 3 user consultants who are members of the community. They will advise us on how our processes and plans can be focused on the needs of those who will be applying for compensation.
Their role includes:
- helping to design and improve training to IBCA colleagues that ensures we understand the experience of people who will make a claim and how best to respond to their needs
- giving feedback on the design and development of the compensation service, alongside many other users who are testing our service
- using their experience, alongside many others in the community, to understand the impact of our work and how we can improve our engagement and communications
We know it’s important to hear as many voices as possible across the infected blood community. That’s why we also run and take part in regular engagement sessions, and run usability testing sessions as we continue to build the service.
User consultant biographies
Susan Harris (previously Susan Stretch)
Susan was diagnosed as a child with type 3 severe Von Willebrand disease and contracted hepatitis C as a result of infected blood product. She eventually cleared the virus in 2012 after 2 rounds of interferon ribavirin drug therapy.
She served as vice chair on the board of trustees for the Haemophilia Society working closely with the Public Inquiry sub-committee and the All-Party Parliamentary Group (APPG). She has also worked with the Hepatitis C Trust for the last 5 years as their lead on infected blood.
Susan is a qualified barrister. She has extensive knowledge and experience of supporting communities, and a clear understanding of the support schemes and the Public Inquiry.
Susan said, “It has been an incredibly difficult experience over the years for me and my young family. Dealing with the impact of the virus on my health and legal career and the devastating long term consequences of interferon treatment.
“At the Hepatitis C Trust I have worked almost exclusively with the whole blood community. In my role as user consultant, I’ll bring my in-depth knowledge and understanding of infection through blood transfusions and the complexities and challenges that the community has faced with infected blood claims.”
Clair Walton
Clair is an HIV-positive widow, who contracted the virus in the 1980s from her late husband, Bryan, a co-infected haemophiliac. She nursed and cared for Bryan during his battle with Aids and grieved his death. Clair survived life-threatening complications herself, faced the loss of career opportunities and the chance to have children and a normal family life.
She is a professional and accredited conservator who has held senior positions and was responsible for the conservation of historic cultural collections of outstanding importance.
After her husband’s death in the 1990s, Clair took action to raise awareness about HIV-related issues. She addressed an All-Party Parliamentary Group (APPG) on surviving Aids and has delivered statements on the abuse of HIV-positive women and children to the UN Commission on Human Rights. Clair also led workshops in Ukraine for people living with HIV. Later, she co-founded Positive Women (PW) with another HIV-infected partner facing similar challenges. Clair was a core participant in, and gave evidence to, the Infected Blood Inquiry.
Clair said: “I’ve faced decades of navigating systems that dehumanised, marginalised and failed me, my husband and others. As a user consultant at IBCA, I intend to provide critical insights that will assist IBCA to shape a culture and processes that foster fairness, compassion and inclusion in delivering compensation. I am committed to honouring the dignity and humanity of all those infected and affected, supporting efforts to ensure their voices shape the lives they deserve.”
Jason Evans
Jason’s father was infected with hepatitis B, hepatitis C and HIV through infected blood products and sadly died of Aids. His uncle was also infected with hepatitis C and HIV through blood products and later died.
Jason was previously a director of Factor 8, an infected blood scandal campaign organisation. He successfully campaigned for, and was a core participant in, the Infected Blood Inquiry and a compensation framework exercise. Jason received the Sheila Mckechnie Foundation Campaigner of the Year award in 2023 and a Pride of Britain award in 2024 for his work on infected blood.
He brings his experience about the infected blood scandal alongside relevant professional experience, including developing customer relationship management systems, digital infrastructure and training, and a Masters in Journalism.
Jason said: “This is the most important work I’ve ever been involved in and I’ll do all I can to help IBCA achieve its goal of delivering compensation as quickly as possible. I know and understand many of our community’s anxieties, fears and frustrations. Only delivery, not words, will bring some form of closure and relief. I hope that with each compensation claim paid, those shared anxieties will be reduced.“