The heart-breaking real life story of a contaminated blood campaigner

On the second day of the long overdue public inquiry into the NHS Contaminated Blood scandal, leading Criminal Barrister Sam Stein caused a sensation by referring to the harm caused to haemophiliacs and the deaths of so many as “grievous bodily harm and murder”. He represents four clients, three being among the longest standing campaigners like Carol Anne Grayson whose husband Peter Longstaff was a haemophiliac. Peter’s blood did not clot properly and he died as a direct result of receiving imported US factor concentrate treatment used to stop bleeding which were infected with HIV and hepatitis C during the 1970s and 1980s.

The Inquiry, which opened in London this week, is set to expose Government failings, an alleged cover up and a shocking level of incompetence. Profit was put before public health and NHS safety rules were slung out of the window to save money. Early warnings from the World Health Organisation in 1975 were completely ignored. The WHO recommended all countries should be self-sufficient in blood and blood products using blood from unpaid donors and screened to the highest safety level for known viruses.

In an exclusive interview, Peter’s widow, Carol who became his partner in 1991, recounted to me the shocking events over the past 30 years that have bought us to this week’s public inquiry in which around 5,000 haemophiliacs as well as others receiving whole blood transfusions were infected through products they received on the NHS. Many have since died. This figure does not include the staggering numbers of family members of those infected some also seriously harmed in this scandal. One of those was Arnold Longstaff, father to Peter and his Brother Stephen also a haemophiliac. Arnold was devastated to discover both his sons had been infected with HIV in 1985. Stephen was the first to die age 20 in 1987 going blind and developing a rare form of cancer, Karposi’s Sarcoma, which is related to AIDS.

With both boys infected, the family’s high profile campaigning for justice led to their family home being targeted as fear and hysteria gripped the nation around AIDS through ignorance and bigotry.  Patients were in total fear of attack or discovery. They were also afraid to upset the doctors treating them so some would not meet fellow campaigners openly for mutual support but in secret in hospital car parks. Arnold would come home to find slogans daubed on his house ‘AIDS get out of Here’. On another occasion Peter had to be rescued by his GP after a screaming mob on hearing that this was a house in which an AIDS victim lived, chanted hate outside his home. The worry of campaigning and loss of his youngest son Stephen was too much for Arnold who died at 58 of a heart attack, said Carol. She also lost a baby which she believes was due to the stress and the terrible discrimination the family faced at that time.

What is extraordinary about this case is that it could have been so different. The UK had what was recognized in the 1970s internationally as an excellent system of blood collection. Members of the public would donate blood without payment through goodwill at their local blood centre, and it was carefully screened for known viruses. In 1973 that all changed and this is where it all becomes murky and the cover up begins with the importation of US factor concentrates made from plasma, pooled donations of up to 60,000 donors from prisons, skid-row clinics and donors were paid for their blood.

In the 60s and 70s blood came from Central America and clinics on the US/Mexican border which created a profitable but unethical local economy feeding an expanding global health market. Skid row plasma centres were often in the poorest areas, this cheap supply of unregulated blood made its way into the US to be manufactured into factor concentrates putting profit before safety.

Therefore it was not long before US Prisons also saw the profitable opportunities that a captive and large prison population could deliver despite the high levels of drug abuse, Hepatitis and AIDS. Plasma sold in a concentrated powder form which could be mixed later with sterile water was sold on to the West, the NHS in the UK and Ireland where it was injected into the veins of haemophiliacs.

Alarmingly some of present UK blood contamination can be traced back to the US state of Arkansas. The prison would sometimes hand over the control and paper work of the plasma centre to inmates who were alleged to falsify names using a local telephone directory if a prisoner was infected with hepatitis. The inmates were able to earn cash from their own blood by selling it to US companies. Other irregularities included needles being sharpened with sand paper so they could be used time and time again regardless of the risk.

The British Government appears to have failed in its own research regarding the dangers of using US plasma known well before the 1970s. An American hepatitis expert called J Garrott Allen actually wrote to a government official William Maycock in 1975 highlighting the dangers of skid-row and prison blood but this was ignored.

Carol first became involved with the Contaminated Blood campaign working as a Nursing Sister in the 1980s and cared for the UK first AIDS victims. So it was no surprise that in 1984 she was asked to work on Government guidelines to offer pre and post-test counselling, advice and support to the increasing numbers of AIDS sufferers within the NHS. Carol and Peter grew up in the same town of Hartlepool, so knew each as teenagers, when they met again and got together her experience of working in this field made Carol feel she would be capable of looking after and addressing Pete’s needs whilst being fully aware of the risk and protective measures she would need to take herself. However, nothing could have prepared her for the way her family would react to her decision to become Pete’s life partner.

Carol’s father disowned her (though years later they were reunited) and her mother was caught in the middle. The pain this caused Carol is still clear to hear in her voice today, but fight on she did. She began campaigning with Pete in 1991 and later established a group called Haemophilia Action UK in 1994. Carol and others were shocked to discover that whilst tests for HIV and hepatitis C were carried out on many haemophiliacs both male and females with a bleeding disorder, some were never told of the results and went on to infect their partners and children.

Haemophiliacs like Andrew Evens were diagnosed as children with HIV. He was told at the age of 9 that he would not live long and at 16 his HIV status progressed to full blown AIDS. Despite this diagnosis, Andrew is still alive and is one of the many inspiring survivors who will be giving testimony at this public inquiry.

Lord David Owen, a junior health minister in the 1970s, was shocked to discover years later after he left the Health Department to become Foreign Secretary that process of self-sufficiency in blood products he had put in place was promptly ditched by those who followed him. There was also the problem of inadequate funding to BPL (Blood Product Laboratories) which manufactured British plasma products increasing the reliance on US products.

In 1991 the Government of the day made a an “ex-gratia” payment to victims but ignored that many haemophiliacs were also infected with hepatitis C and only payed out for HIV putting a hepatitis waiver in the legal agreement which stopped haemophiliacs litigating for a 2nd virus.

In 2000 the Newcastle Journal working jointly with Carol set up the award winning “Bad Blood” campaign. They submitted a large dossier of documents to the DOH as a direct result of which the government agreed to respond by writing a report on Contaminated Blood. This was named the Self-Sufficiency in Blood Products report (despite the UK never achieving self-sufficiency) and was published in 2006.

In 2006, Carol whose life work had become the Contaminated Blood Scandal went to Sunderland University and wrote a dissertation which was awarded the Economic and Social Research Council (ESRC) Michael Young prize for her ground-breaking work. She showed what was important wasn’t just what was in the report but that key documents showing alleged liability were left out. In December 2017 after ten years of her research being ignored by government and many at the national Haemophilia Society, the report was quietly withdrawn and ministers told not to use it again. Carol had previously presented many documents which later featured in her dissertation DIRECTLY to politicians at Westminster showing systemic failures. Documents were presented to Lord Hunt of Kings Heath, Yvette Cooper and Anne Milton but little changed and no one wanted to accept responsibility for what went wrong.

Years later following a privately funded inquiry, the Government chose to ignore the findings of Lord Archer of Sandwell whose report was welcomed by the victims. Archer included a recommendation that victims should be paid “compensation on a parity with Eire” (Irish haemophilia victims) but this was kicked into the long grass. Eire unlike the UK, paid compensation to victims on the grounds of “extraordinary suffering” based on “loss and need” and awarded payments to infected and affected family members at court payment levels but without going to court. Haemophiliac Andrew March launched a Judicial Review in 2010 to challenge the then then Secretary of State for Health relying on key evidence obtained in 2004 by Carol Grayson and fellow campaigner Colette Wintle. Despite the case being won by Andrew’s legal team, the government still refused to pay out even though it was established that Eire DID NOT accept legal liability as falsely stated by the British government who used this as the reason not to compensate.

Carol, who is represented by Milners Solicitors of Leeds, is now in poor health which kept her away from the inquiry hearing this week. She has given the past 30 years of her life to fighting for justice, not just for her husband, her brother in Law and her father in Law who due to the abuse of Government are no longer with us but to other victims, hopefully that investment will finally pay off.

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