Charity warns that health reforms in England could dramatically reduce funds for people with haemophilia infected with hepatitis C or HIV in the NHS scandal

Department of Health reforms in England threaten to dramatically reduce the size of payments awarded to people with haemophilia who were infected with the hepatitis C virus (HCV) or HIV in the NHS contaminated blood scandal, a charity has warned.

The Haemophilia Society and campaign groups for those infected and their families say the proposals will bring big cuts to payments at a time when the Scottish government is considering huge increases for those infected in the scandal in the 1970s and 1980s.

“We believe the [English] government consultation on this is so flawed it should be withdrawn,” said the society’s chief executive, Liz Carroll. “It has said repeatedly that under this new system no one will be worse off, but every single person we have spoken to says they will be worse off.”

Four people speak out about impact of NHS contaminated blood transfusions Read more

For many with haemophilia, the move “brought back feelings of despair they had before, when they were told of their diagnosis. It is that desperate. They are frightened about losing their home, their income.”

Those infected and their families face swingeing cuts to what have become regular discretionary payments, in many cases up to £7,000 a year, together with cumulative losses from the freezing of fixed annual payments to patients at £15,000 a year, time-limited support for partners and spouses after patients’ deaths and the ending of help for children and parents of those infected. A number of patients currently deemed to be in the less serious stage of HCV will have help for the first time.

People with haemophilia need blood products from thousands of donations. In the 1970s and 1980s these were imported from the US where donors were paid – a practice that increased the risk of unsuitable blood – because there was a severe shortage of clotting factors in the UK at the time.

Donors in both countries included those in prison where drug abuse was an added risk. People without haemophilia were also infected by blood transfusions undergoing surgery or, in the case of women, during childbirth.

Key factors in UK ministers refusing to accept liability have included HIV being only formally identified in 1983, heat treatment for other viruses in clotting factors being introduced when the technology was available in the mid-80s, and HCV not being identified until even later after which tests to check donated blood could be developed.

Facebook Twitter Pinterest Carol Grayson said those with haemophilia were experiencing collective punishment. Photograph: Christopher Thomond for the Guardian

Carol Grayson, whose husband, Peter Longstaff, died in 2005 after being infected by both HIV and HCV when treated for haemophilia, said: “If this were done to the wider population, reducing their wages, there would be riots on the streets.”

She said those with the condition were experiencing “collective punishment”, and claimed: “They are deemed too expensive to support because they didn’t die quickly enough. Widows who gave up good careers to care for their husbands will be severed from much needed financial help.”

“I lost my husband and brother-in-law. My right to a family life, work and my health was compromised due to years of bereavement, campaigning for my community, alongside substantial financial losses.”

The effects of the scandal have so far cost UK governments nearly £400m in payments. But with devolved healthcare, England, where the bill may eventually reach £1bn, and Scotland are now planning their own schemes. Wales and Northern Ireland, where fewer patients are involved, are watching developments.

Of the 5,858 people who have so far received ex-gratia payments after being infected with HIV, HCV or both, 1,828, or nearly one-third, have died. The government believes 80 to 90 people a year will join the scheme in the next five years. A total of 243 partners or spouses currently receive some help but there is no central figure for the number of dependents who have ever been supported.

The system of five-figure, one-off and annual payouts has developed over the past 25 years, while organisations involved in delivering the state aid have different policies regarding discretionary top-up help.



The Department of Health in England says it wants to change arrangements in response to demands for a less confusing system. It believes these would result in “a more accessible and equitable” system of support while “better value could be provided to the taxpayer”.

Two of the five organisations that at present make payments to patients and families have already spelled out what they believe will be “the negative impact” on beneficiaries under the proposals.



Facebook Twitter Pinterest Health minister Jane Ellison told MPs last month ‘no amount of money could ever make up for the impact this tragedy has had’. Photograph: Pa/PA

The MacFarlane Trust, which supports people with haemophilia infected with HIV because of the scandal, thinks those with HIV only or with HIV and HCV at the more serious stage 2, where people have cirrhosis, will be worse off financially under the proposals.

Those only with HCV at stage one might be better or worse off depending on a new health assessment they are now being offered. The impact of already having haemophilia will not play a part in this assessment.

Bereaved partners may be better or worse off depending on whether or not they choose a lump sum, the size of this lump sum, and exactly what ongoing discretionary support the government eventually decides on. There will be no help for parents or children of patients. The Caxton Trust, which helps those infected with HCV, has also made clear its concerns.

Ministers in successive governments have insisted the financial support has been voluntary and recognition of how people’s health has been damaged.



David Cameron told the Commons last March: “It is difficult to imagine the feelings of unfairness that people must feel at being infected with something like hepatitis C or HIV as a result of a totally unrelated treatment within the NHS. To each and every one of those people, I would like to say sorry on behalf of the government for something that should not have happened.”

Jane Ellison, a health minister, told MPs last month when the consultation was launched: “I cannot right the pain and distress of 30 years, and the truth is that no amount of money could ever make up for the impact this tragedy has had on people’s lives.”

Critics fear the single body replacing the various organisations and charities that dispense government funds at present will adopt similar health assessments that has made the Department for Work and Pensions so unpopular with claimants.

Cameron apologises to those infected with hepatitis C and HIV 30 years ago Read more

Whatever form the new tests do take, they will not be run by the DWP, the Department of Health told the Guardian.

Another proposal is that those infected with HCV via contaminated blood might have special access to new expensive treatments paid for by department funds, while others with the condition must wait for clinicians to determine whether they can have them from limited NHS budgets.

Some critics fear this goes against the principle of NHS treatments being prioritised by need. The health department admits that while the new treatments will cost up to £42,000 when bought by the NHS, that rises to £54,000 for the special category of patients infected through the blood supply because the department would not have the same purchasing power.

Ministers say people affected by the contamination make up fewer than 2% of all people with hepatitis C in England. The special fund would allow them to access treatments they might not otherwise be entitled to under best practice guidelines.

Diana Johnson, the Labour MP who chairs the all-party parliamentary group on haemophilia and contaminated blood, said while members wanted HCV treatment to be available to those who needed it, “there is real concern that funding for treatment could be deducted from the money allocated to support people ...

“While the minister [Ellison] is absolutely right that there were big problems with the way some of the discretionary support was delivered, it was also providing much needed help to people.”

The group welcomed the government’s desire to help those with HCV stage one, but said: “We do have concerns about the assessment regime and how it will work.”

• This article was amended on 15 February 2016. References to a cut in “compensation” were changed to “payments”. The sums received by victims of the contaminated blood scandal have only ever received ex gratia payments and not compensation.

