Peter Longstaff and his wife Carol Grayson first challenged the hepatitis waiver in the 1991 Haemophilia HIV litigation in 1994

Back in 1991, haemophiliacs involved in an HIV litigation class action were made to sign a “waiver” after receiving contaminated blood (plasma products named factor concentrates) on the NHS during the 1970s and 80s. This Undertaking as it was officially known required haemophiliacs to waiver their rights and not take legal action for hepatitis infection in order to receive “ex-gratia” payments for themselves and their families from the UK government. This was NOT compensation which has never been paid and pressure was put on all to sign or they may not receive any payment..

Peter Longstaff a haemophiliac already infected with HIV and hepatitis B decided to attempt to overturn this waiver in 1994 after being told he was positive for hepatitis C. He and his wife Carol Grayson sought a legal opinion from a former head of the Bar Association, who after examining key evidence from the original litigation, highlighted that this waiver would be unlikely to stand if challenged in court. This was due to the fact that Longstaff did not know he was infected with hepatitis C at the time he signed the Undertaking in 1991 and therefore not “informed consent”. Documents within the legal and medical records showed however that lawyers and doctors did know at this time that around 99% of haemophiliacs infected with HIV were co-infected with hepatitis C. Some had already been tested and their positive test results withheld from them in some cases for several years.

Grayson and Longstaff later discovered the reason why the waiver was put into the group litigation settlement in 1991. Longstaff’s former solicitor Tony Mallen was interviewed for the Newcastle Journal Bad Blood campaign set up by journalist Louella Houldcroft jointly with Grayson and Longstaff in 2000 as follows,

“Mr Mallen says he and his team  had no choice but to include this (the Undertaking) in the agreement. ‘Many of these people were receiving benefit, because they could no longer work, and for this they were means tested’ he said

‘We agreed compensation for the haemophiliacs totalling 42 million but also asked that the money they received through this settlement should be disregarded when deciding whether or not they qualified for benefits.’ 

‘The government said they would only do this if the haemophiliacs agreed to claims not being brought  in respect of hepatitis infection.'” 

(Note “Compensation” in terms of individial “loss and need” at court levels was never paid only what government termed “ex-gratia” payments settled out of court.)

This non- means testing was also extended to money received by partners of haemophiliacs where it was meant to be disregarded, it did not affect claiming benefits.

As lawyers also stated to the media years after the HIV litigation ended, haemophiliacs signing the waiver meant government did not have to pay out for a further virus, hepatitis C.

This week an announcement was made by government that Contaminated Blood scandal victims would be eligible for further derisary financial support to add to the begging bowl system of payments. These were first made through the Macfarlane Trust and Skipton Fund, (disbanded) and now paid through English Infected Blood Support Scheme (EIBSS). Macfarlane and Skipton were earlier scrapped without consultation with the longest standing haemophilia campaigners who much to their anger and dismay were excluded from a key meeting organized by government with a mediator. Ommission of knowlegable activists for haemophilia with key documents meant there was less chance of opposition being raised to the trusts being dismantled.

The additional money announced this week by Jackie-Doyle-Price coincides with the first day of hearings of the Infected Blood Inquiry in London chaired by Justice Brian Langstaff. It was reported by INews that,

“Recipients, including bereaved spouses and partners, could also be eligible for further financial support, through means-tested discretionary top-up payments.”

What was the point in haemophiliacs signing a hepatitis waiver that payments for HIV haemophiliacs and their families whould not be means tested if payments are continuing to be means tested in 2019?

Back in 2007 a private Inquiry into the infection of haemophiliacs was chaired by Lord Archer of Sandwell who highlighted that the begging bowl system was an insult to victims and recommended that they and their families should be paid “compensation on a parity with Eire” echoing Grayson’s campaign initiative from 1996.

Southern Ireland paid out to their haemophilia families on the grounds of “loss and need” in recognition of “extraordinary suffering” in advance of Tribunals. As the Eire government, Irish Haemophilia Society and Malcolmson Law Irish lawyers highlighted in personal letters to Grayson and her campaign colleague Colette Wintle in 2004, their government DID NOT accept legal liability but paid out compensation at levels used by the courts but without haemophiliacs having the stress of going to court.

A Westminster government rejected Archer’s recommendation falsely claiming Eire accepted legal liability. Haemophiliac Andrew March took out a Judicial Review against the then Secretary of State for Health supported by Grayson’s evidence from 2004 which showed this decision was “infected with error” and the JR was won in 2010. The government were told to go away and reconsider but again they refused to compensate on a parity with Eire changing the goalposts and saying they did not have to follow another country’s scheme. Shortly afterwards the previous misinformation continued despite the success of the JR.

A revised Scottish payment was later established by the devolved government giving haemophiliacs that were part of the HIV litigation and others infected with HCV significantly higher payments than the rest of the UK but not based on individual loss and need as in Eire. A “pension” was also established for widows DESPITE pensions not actually being devolved in Scotland. Payments are not means tested for those over the border and are in addition to state benefits.

Regarding the new financial announcement, Health Minister Jackie Doyle-Price said:

 “We have continued to follow the Infected Blood Inquiry closely and have considered the issues raised at the initial hearings and now we are demonstrating that we have listened by committing up to a further £30 million to the scheme.

“We have also listened to the call for parity of support across the UK and we are planning to start discussions with our counterparts in the devolved administrations to see how this could be achieved.”

Although the Scottish scheme is an improvement on the rest of the UK, this is not what Lord Archer recommended. He recognized the unique situation of haemophiliacs as a distinct patient group, given a Special Status on which the ex-gratia payments were made in 1991 and which should have been extended to all haemophiliacs with hepatitis C. (The Special Status conditions are not applicable to whole blood victims.) This was that haemophilia was an hereditary condition with haemophiliacs being disadvantaged from birth, in education, employment and insurance, often with multiple family members with this condition. This was highlighted in an article on Haemnet by Luke Pembroke which showed the extent of the damage to one family when HIV emerged,

“Whole families were affected – Maureen (a haemophilia nurse) remembered one family in which 17 members with haemophilia were HIV positive.”

Jackie Doyle-Price’s announcement of increased financial support does not go anywhere near matching the extent of the harm and suffering in the haemophilia community. Haemophiliacs continue to die from the multiple viruses in their system with many bereaved partners now ill too with depression, anxiety, PTSD and unresolved grief after giving up their own careers to spend years caring 24/7 for loved ones. Partners of haemophiliacs were often the main wage earner in the family but that too has gone unrecognized. Children and parents have also been affected.

Those attending the first few days of evidence at the Infected Blood Inquiry have heard harrowing stories. Its time for government to ditch means-testing of derisory payments and pay out proper compensation allowing haemophilia families financial security and a litle comfort for what is left of their tragic lives.

Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad.  She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.