Victims of contaminated blood scandal denied financial support by arbitrary cut-off date

A woman infected with hepatitis C from contaminated blood has launched legal action after the government denied her financial support available to other victims despite accepting she was made sick by tainted blood.

Carolyn Challis told The Independent her life had been dramatically affected by the virus, which left her with debilitating fatigue and other symptoms meaning she couldn’t work and was left to look after three children.

With the help of lawyers from Leigh Day, she is bringing a judicial review against the Department of Health and Social Care, challenging what she believes is an arbitrary cut-off date for victims of the contaminated blood scandal to receive financial support including payments of a £20,000 sum and ongoing help.

The government has said only patients infected before September 1991 are eligible for the payments, but Ms Challis was infected at some stage between February 1992 and 1993 following three blood transfusions and a bone marrow transplant to treat Hodgkin’s Disease, a form of blood cancer.

The Hepatitis C Trust told The Independent she was not the only person infected after 1991 and it has called for more widespread testing to identify what it warned was a hidden population of people infected with the virus, which can take 20 years to fully manifest itself in patients.

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The contaminated blood scandal has been described as “the worst treatment disaster in the history of the NHS” by Lord Robert Winston, with as many as 5,000 people thought to have been infected with hepatitis C and HIV. At least 3,000 have died and many are living with serious disabilities.

The contaminated blood and plasma products were bought by the UK from countries like the USA which paid donors for blood.

The scandal is being examined by an ongoing public inquiry led by Sir Brian Langstaff.

The government established an initial scheme in 1987 with a £10m grant to the Haemophilia Society to establish a trust. Eventually it established the English Infected Blood Support Scheme, now run by the NHS Business Services Authority. It can make one-off payments of £20,000 to victims as well as provide some ongoing support – but only for patients infected before September 1991.

Several witnesses to the public inquiry have said they were infected after the 1991 date and all have been refused support.

The inquiry has heard some blood and blood products that were purchased for use in the NHS before 1991 may have been stored and not used for months or years later meaning a risk patients were infected after that date.

Ms Challis, a 64-year-old mother of three, believes she was infected with hepatitis C as a result of transfusions received between March 1992 and July 1993.

In 2020 she was told the evidence from her doctors was accepted but she would not receive any payments due to the cut-off date.

She told The Independent: “In the one breath, they say we accept you were given infected blood but then no, we can't give you the money. I am sad that I haven’t been able to work. My career has been cut short. I’m angry that I haven’t been heard. I have a righteous anger for all of us who were infected, and I want justice for all of us.

“The effects of being infected have profoundly influenced my lifestyle over the past thirty years. My relationships and interactions with my family and friends changed completely. For many years I forgot what it was like to feel normal and even my ‘good’ days could only be considered good in comparison to really awful ones.”

Her symptoms included chronic fatigue, muscle pains and brain fog, with even minor effort having consequences.

“One of the things that I remember the most is, I would be so tired. And I would lie in bed, and I couldn’t move. I couldn’t actually physically turn over, even if I wanted to.

“I want the cover-up exposed. I want everybody in the country tested. There’s a finger prick test now that costs under £12, they could test everybody and find the missing millions.”

Her lawyers are bringing a judicial review against the health secretary Matt Hancock on the grounds the cut-off date is factually wrong and discriminatory.

Leigh Day partner Emma Jones said the government was “clearly mistaken” for sticking with the 1991 cut-off date.

She said: “We are hopeful the decision will be ruled unlawful and therefore overturned so that all those who have been infected as a result of this scandal will be eligible to receive an ex gratia payment.

“Leigh Day has been working with individuals who have been infected or affected by contaminated blood for a number of years. We heard evidence during the first phase of the hearings from a number of individuals who have been refused payment because of the cut-off date. If this judicial review succeeds it will benefit many individuals.”

The legal action is backed by the Hepatitis C Trust who told The Independent it was aware of other people in the same situation.

Rachel Halford, chief executive of the trust, said: “We do have a number of people we have previously or are currently supporting who were infected after September 1991. We believe the inquiry should be exploring how the government could know that after that point no more infected blood was used. There are cases like Carolyn’s where people with hepatitis C have no other risk factors other than through contaminated blood – she is not alone.

“This is not something these people chose. These are people who put their faith in the NHS and then they have ended up with HIV or hepatitis C and it is soul-destroying for them.”

She warned patients with hepatitis C could by asymptomatic for 20 years or more, adding: “There is a hidden population of people in the UK with hepatitis C. Testing for it needs to be normalised and rolled out in the general population.”

A Department for Health and Social Care spokesperson said: “We are unable to comment on any potential or ongoing legal proceedings, but we are clear that the infected blood tragedy should never have happened. The ongoing public inquiry was set up to establish the truth and give individuals and families the answers they rightly deserve.

“The government recognises the ongoing pain and suffering caused to those involved and are committed to being open and transparent with the inquiry. We have waived the usual legal professional privilege to assist the process and former ministers and civil servants continue to provide information to ensure the inquiry can publicly explore any issues of concern carefully and fully.”