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Infected blood inquiry: Two thirds of families of HIV victims excluded from interim payments


Tom Sasse

Tom Sasse

6 min read

Interim payments to victims of the infected blood scandal announced by the government today will cover only a third of families of those infected with HIV, The House magazine can exclusively reveal.

Unveiling the compensation of £100,000 for victims, Prime Minister Boris Johnson declared: “we will continue to stand by all those impacted by this horrific tragedy”.

Yet, as with previous government support for those impacted by the scandal, the scheme is only available to those who were themselves infected, and bereaved partners, not their families, meaning it will exclude thousands of victims including those who lost parents and children.

New data obtained exclusively by The House reveals just how limited government support has been, with up to 63 per cent of families of those infected with HIV in England having never received any payments. This means they will still get nothing after today’s announcement.

Where at least 1,243 haemophiliacs are known to have been infected with HIV, only 457 families are receiving any kind of ongoing support

The ongoing Infected Blood Inquiry, which is chaired by Sir Brian Langstaff QC, is examining what is regarded as the worst scandal in NHS history in which thousands of patients in the 1970s and 1980s were infected with hepatitis and HIV after being treated with contaminated blood products, mostly imported from the United States.

More than 2,400 victims are known to have died. Thousands more – the true figure is unknown because medical data has never been released – have had their lives blighted over decades, with many suffering devastating and lifelong harm. Marriages and relationships often broke down leaving families without support.

Unlike other impacted countries, however, successive governments in the UK have never accepted responsibility for the scandal or established a comprehensive compensation scheme for victims and their families.

While there has been a patchwork of subsistence schemes administered by charities and the NHS, these programmes have not sought to identify or meet levels of need or cover all those affected. The inquiry has found financial and other support has been meagre compared to other countries, including Ireland.

The new data, obtained via an Freedom of Information request by campaign group Factor 8, shows just how patchy compensation has been. It reveals that in England, where at least 1,243 haemophiliacs are known to have been infected with HIV, only 457 families are receiving any kind of ongoing support, leaving almost two thirds with nothing.

Among those excluded is Lauren Palmer, who lost both her parents in 1993 after her father received HIV-infected blood and, unaware of his status, passed it on to her mother. Despite being orphaned at the age of nine, she has never received any support.

She said: “Of course [today’s announcement] is very welcome news for some, but the it ignores children who lost parents, parents who lost children, carers who spent years looking after victims… it ignores a very large number within our community who had to live very different lives, and it shouldn’t have.”

Langstaff recommended the interim payments following a report from Sir Robert Francis QC, commissioned by ministers, which concluded there was a “strong moral case” for wider and more generous compensation framework and said there was “no coherent rationale” for the design of previous schemes.

Yet despite namechecking the report, which was delivered to them five months ago, ministers have still not formally responded to it and ducked an opportunity to discuss its findings at the public inquiry.

Jason Evans, founder of Factor 8 whose father died after contracting HIV and Hepatitis-C from infected blood, said: “The government has no good explanation – following years of testimony which it now accepts and a comprehensive study of compensation schemes – for why it is continuing to deny support to most families.”

Apart from being inadequately funded, UK compensation schemes have been criticised for being complex and confusing, poorly publicised and mal-administered. Langstaff has also raised questions about whether excluding impacted children would have been lawful.

Following a decades-long campaign and the spotlight of public evidence hearings, the government’s position on infected blood victims has begun to change. For decades ministers insisted it was an awful tragedy but they had done nothing wrong and followed the best advice they had available.

If a single parent who was infected dies in the coming weeks, their family will still receive no support

However a succession of recent ministers – including former health secretaries Andy Burnham and Jeremy Hunt – have said this position was wrong and called for compensation and answers. The government’s legal representation has accepted the scandal should not have happened and “things went wrong,” offering an unreserved apology.

Yet this shift raises questions about why the government is not now moving more quickly to address historic wrongs that have been sustained over decades – not least because many victims will not survive to see the outcome of the inquiry, which is not due to report until next year.

It is estimated that on average a victim dies every four days and more than 400 have died since the inquiry began. This was cited as a key justification for urgent interim payments, yet campaigners say it should also have been a reason to widen the scheme. They highlight that if a single parent who was infected dies in the coming weeks, their family will still receive no support.

Des Collins, a lawyer whose firm represents victims, argued that following four years of public testimony “any argument that we need any more evidence of the fact the government is held to account is now untenable”. Of today’s announcement he said: “Yet again, without reason, it seems [excluded families] must wait.“

Pressed on why many bereaved families would be excluded, Chancellor of the Duchy of Lancaster Kit Malthouse told Sky News they were “more complicated” and “we will get to them in the end,” calling the today’s announcement an “interim position”.

But he refused to offer those families any certainty that the government would establish a full compensation package, saying “it would be wrong to prejudge” and the government would “look at what if any compensation should be payable” once the inquiry has concluded next year.

For many this will prolong the uncertainty. Palmer said she “hoped the scheme would be widened but [I am] not holding out after so many disappointments”.

A Cabinet Office spokesman would not confirm if the government knew how many families would be excluded from the government’s scheme. He reiterated that the government would respond in full once the inquiry concludes next year, and would also respond to any further interim recommendations from the chair.


Tom Sasse is a freelance journalist.

Images (top to bottom): Lauren Palmer (DSP), Jason Evans (DSP).

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