"I hope we are still alive when it ends" - victims prepare for contaminated blood inquiry
PUBLISHED: 19:09 21 August 2018 | UPDATED: 19:09 21 August 2018
A Norfolk woman infected with contaminated blood in what has been described as one of the worst scandals in NHS history hopes to be able to speak at the pending inquiry into the tragedy.
Michelle Tolley, from Sparham, was infected with contaminated blood during a transfusion in 1987.
The scandal has claimed the lives of up to 2,500 people since the 1970s and 1980s.
And Mrs Tolley, 53, was only diagnosed with Hepatitis C in 2015, after living with the disease for years.
The contaminated blood scandal involves the use of contaminated blood products donated through high risk sources.
A public inquiry will consider “whether there have been attempts to conceal details of what happened” through the destruction of documents or withholding of information.
And as the inquiry officially opens on September 24, a commemoration will be held in London for all those affected.
Mrs Tolley said it was “to remember all those who have been affected and suddenly lost their lives, and all the babies who have been infected”.
She runs the Contaminated Whole Blood UK support group, and will be a core recipient in the inquiry.
She says she hopes to achieve advice and information in every doctors surgery so those who remain undiagnosed can be found.
“It has still only been three years for me so it is all still relatively new,” she said. “There are guys who have been fighting for 30-plus years. It has been happening to me for the last 31 years so if I had known I would have been alongside them.
“If I do get to speak one thing will be to make sure all doctors surgeries are targeted with basic information, just to give those people a chance of living.
“A lot of people did not want to speak out as they live in small communities and fear stigma.
“This was given to me, and I was so horrified by that fact.”
She added: “I am hoping the inquiry will find out when did they know the blood was infected, and why did they keep using it. For me it is not about compensation, because you can’t put a price on what we have lost and what I will lose in the future. I can’t work now and it has left me with ongoing health conditions. I am now 53 and what I could have done with that time has been taken away from me.
“I just hope we are still alive when it all ends. From July last year to July this year 96 people have died in the UK.”
Inquiry to last two and a half years
Sir Brian Langstaff, chairman of the inquiry, vowed he would “put the people who have been infected and affected” at its heart.
“This may have happened principally in the 1970s and 1980s, but the consequences persist today with people continuing to feel the mental, physical, social, work-related and financial effects,” he said.
Jason Evans, whose father Jonathan died after being infected with HIV, said the terms of reference “encompass all the main issues that I would have and I think the wider community has”.
Prime minister Theresa May announced last year an inquiry would be held into the events of the 1970s and 1980s, when thousands of haemophiliacs and other patients in the UK were given infected blood products, leaving at least 2,400 people dead.
The inquiry, which is expected to take at least two-and-a-half years, will begin hearing evidence next spring.
The first preliminary hearings are due to be held between September 24 and 26.