Day 52 of the Infected Blood Inquiry, London

On the 18th October we attended the Infected Blood Inquiry hearings to listen to the testimony given.

Tony

His late father received Factor VIII products in 1977 in Wales for the first time and as a result became infected with HIV and hepatitis C. The first part of his testimony was about how he had to piece together his father’s medical records (or what was left of them) in order to understand what really happened to him.

He described how his father’s physical and mental health deteriorated rapidly over the years, resulting in him eventually admitted under the Mental Health Act on account of black moods, uncontrollable crying, general hostility and aggressive behavior. It is when his father got really ill that things started falling apart at home.

Tony, who has a twin brother, eventually run away from his home and ended up in a children’s home with no support until he was 16 years old. He was also separated from his brother David who was placed in care at a different address.

“Many in our group have psychological trauma that has ruined their education and left them unable to work or, at best, they have never reached their full potential. We have all lost far more than just our parents.”

 

Rosamund and Juliet
Rosamund was adopted when she was 12 weeks old by Juliet who was just so proud of having a baby.  In 1975, when she was 8 months old, Rosamund was diagnosed with severe Von Willebrand's disease and has received blood/blood products since then.

She was first diagnosed with hepatitis C during her first year at university.  What followed during her testimony is all too familir: no medical records, lack of information, no external support, broken life aspiration, wasted career and so on. 

Rosamund put on a brave face during her statement, even trying to see the funny side of it, but there was no doubt that below the surface, she has been deeply affected. The most striking thing about Rosamund and her adoptive mother Juliet was that they were a team. They supported each other over the years through thick and thin and are still fighting together shoulder to shoulder to get to the truth of the matter. In such adverse circumstances, it was an incredible and beautiful display of strength, love and care from Juliet and an extraordinary show of determination and courage from Rosamund not to be defeated by her illness.

We missed the rest of the hearings taking place that day and instead used the time to speak to others on a one-to-one basis outside the hearing room.One woman, who had received contaminated blood during a transfusion more than 30 years ago told me that she still hasn’t been able to access treatment. I was shocked to hear this as everyone should be able to access treatment quickly and easily now.She told me her appointments kept being cancelled one after the other and that now her next one was not scheduled until October 2020.  This is completely unacceptable.

We now run a “Peer to Peer” project which offers screening and access to treatment to anyone, across the majority of England, to ensure they are tested and treated quickly, so we called our Peer Support lead in Liverpool and asked him to book an appointment as soon as possible for her to have the necessary blood tests and a Fibroscan, both of which are essential before starting treatment. 

We are now arranging a way for her to have her treatment delivered via her GP for monitoring, saving her travelling to Liverpool, as she lives a long way from the hospital.