Haemophiliac Peter Longstaff top row, second from the right was the subject of alleged experimentation at Treloar College in the early 1970s
In the year 2000, Peter Longstaff and his partner Carol Anne Grayson who set up campaign group Haemophilia Action UK made complaints to their local police in Newcastle, northern England, regarding a number of allegations in relation to Pete and his younger brother Stephen becoming infected with HIV and hepatitis viruses. Haemophiliacs are victims of what is now known as the Contaminated Blood scandal, which Lord Winston described as “the worst medical treatment disaster in the history of the NHS.” Some of the allegations related to medical treatment received as part of unethical trials whilst the boys were pupils at Lord Mayor Treloar College in Hampshire, a boarding school for children with disabilities. This scandal is now the subject of the biggest ever public inquiry in the UK known as the Infected Blood Inquiry which commenced in 2017 and is chaired by Sir Brian Langstaff.
Both Pete and Stephen had an inherited condition named haemophilia where the blood does not clot properly. In the early 1970s, whilst a pupil at Treloars, Pete who had previously been prescribed a treatment called cryoprecipitate manufactured using blood collected from a handful of UK volunteer donors was transferred over onto a new so called “miracle” treatment called factor concentrates, much of it imported from the US. However, the parents of children who were put on the first official treatment trials at Treloars in 1973 were never told of the greatly increased risk to their children and that hepatitis infection was almost 100% guaranteed from the first injection of US factor concentrates.
What they didn’t know also in the early1970s, was that the pharmaceutical companies that made the American products from pooled plasma relied heavily on “high-risk” paid donors such as prisoners, prostitutes, gay men and skid-row drug addicts. Plasma was also sourced from the island of Haiti and several Central American countries putting patients at risk from deadly viruses including those not prevalent in the UK. As well as viral risks to haemophiliacs, donors who were often from lower socio-economic groups that sold their blood were over bled thus depleting their health also.
In more recent times, the UK government has admitted to Grayson in a written answer to a Freedom of Information request that no risk assessment was ever carried out prior to importation of US products and the use of factor concentrates in 1973.
In a letter to Mr and Mrs Alice Longstaff dated, 12th April 1973, Consultant Haematologist, Dr Peter Jones, Newcastle wrote encouraging them to agree to Pete being put on the first UK factor concentrate trials at Treloars stating, that the treatment “could do nothing but good for the boys and other patients” but there was no mention of any risks. Old treatment records also show Pete had already received some factor concentrates in 1972 even before official licensing in 1973 possibly on a named patient basis. Grayson has still to obtain and go through records belonging to Stephen to investigate what treatment he received at Treloars.
The first complaint made to Newcastle police by Grayson and Longstaff was not taken seriously. So after a campaign rally in 2001 at Westminster, the couple along with fellow campaigners Colette and Steve Wintle went to the Metropolitan police to lodge a complaint there. The Met referred complainants back to regional constabularies. They then decided to embark on a co-ordinated complaint to regional police across England, Scotland and Wales during approximately the same time period, each taking their own evidence regarding individual cases. Local forces then referred campaigners to Dyfed Powys police in Wales that had a specific remit regarding “corporate manslaughter”. Again part of the complaint was the alleged experimentation on haemophiliacs used as “guinea pigs” at Treloar College and in some haemophilia centres. The issue of experimentation was also the subject of written complaints to the General Medical Council (GMC) AVMA (Action against Medical Accidents) the Department of Health and to human rights organizations including Amnesty International, Human Rights Watch and Liberty.
Years later, Grayson was told Dyfed Powys police investigation under controversial Chief Constable Terrence Grange (who later resigned following a series of allegations) was sat on and the evidence submitted by campaigners meant as a starting point was never followed up or expanded upon. In addition, many key persons, alive at that time (now deceased) that could have assisted with further evidence were never interviewed. The case was closed by the Crown Prosecution Service.
Last year, a virtual police conference took place at Cumberland Lodge which was set up as a form of reconciliation where complainants had been failed by the police in historic cases and included victims of the Contaminated Blood and Hillsborough football stadium scandals among others. Things did not get off to a good start. The first mistake the police made was the failure to identify the original long standing campaigners who had submitted complaints 20 years earlier, instead focusing on a new campaigner Jason Evans (the son of a haemophiliac) who was not involved in any way, shape or form with the original police complaint and only appeared on the campaign scene in 2017.
Grayson did have email contact with Rob Beckley, Assistant Commissioner of Operation Resolve who apologised but after some consideration she declined to participate as for her the issue of experimentation at Treloars is still very much active with the Infected Blood Inquiry. Grayson is requesting via her solicitors Milners of Leeds and Sam Stein QC that they make representation to the Inquiry that both Dyfed Powys police and the GMC are brought before the Inquiry barristers to be questioned on why complaints were not fully acted upon. Colette Wintle did participate and contribute to the conference but was not a pupil at Treloars. A report from this conference is due to be released on 1st February 2022.
Back on the 26th September 2018, the Northern Echo reported the opening statement of Sam Stein QC who represents Grayson (whose husband died in 2005) and the Wintle family highlighting that,
ANYONE who knowingly supplied contaminated blood to a patient who subsequently died is guilty of murder and should be prosecuted, an inquiry has been told.
Sam Stein QC, appearing at the infected blood inquiry on behalf of North-East widow and campaigner Carol Grayson, also said there had been a “systematic attempt to destroy evidence” of the scandal.
In June 2021, the Guardian reported on the case of haemophiliac Gary Webster infected with both HIV and hepatitis C who claims he was not aware of being part of a trial at Treloars stating,
“I honestly don’t remember having any information about going on trials research or anything like that. My parents never were informed of any of it … We always saw we were in some sort of weird experiment because we just couldn’t understand why they were pushing us so much to have all these injections.
It was also reported that “an undated consent form purportedly signed by his mother was shown to the inquiry but Webster said she had no recollection of it.” The paper also highlighted that,
Earlier, the inquiry in central London was shown a document that said Dr Antony Aronstam, the director of the haemophilia centre, “emphasised the necessity for research as the concentration of haemophiliacs found at Treloar’s is unique within Britain”.
On the 20th October, 2021 the BBC reported that Webster “has begun the first legal action by a former pupil against a Hampshire school where boys were given infected blood products” however complaints about unethical experimentation at Treloars to the police preceded Webster’s legal case by 2 decades.
Solicitor Des Collins acting for Webster stated, “There was a total failure to inform and obtain consent on the risks associated with the blood products administered and a deplorable dereliction of duty in the handling of his subsequent diagnosis.”
Old minutes and research papers discovered years ago by Grayson and part of the 1991 HIV Haemophilia litigation showed there that some studies relied on pupils at Treloars to participate in trials and that haematologists in local treatment centres across the UK co operated with doctors at the college and with researchers such as Dr Craske in finding subjects for alleged unethical experimentation. Patients were being quietly observed in treatment trials sometimes for years, in the case of Longstaff from his days at Treloars in the early 1970s right up to the beginning of 1990s without his knowledge or expressed permission and without “informed consent”.
When Grayson raised the general issue of “informed consent” in a letter to Dr Charles Hay (United Kingdom Haemophilia Centre Directors Organization, UKHCDO) in 2003, in an effort to obtain medical records and further information, he wrote back to her directly stating,
“I think it is completely misguided of you to stir up complaints to the General Medical Council. I cannot see this will achieve anything constructive and it can hardly be calculated to encourage support from the medical community for your campaign.”
“Unless you report the history of this tragedy in a balanced and straightforward way, DOH is unlikely to take your campaign seriously and you will not enjoy the support of the medical profession.“
After Grayson wrote to Hay about haemophiliacs being tested for hepatitis C without permission following infection via factor concentrates and their positive test results withheld sometimes for years, Hay responded to an email from Charles Lister at the Department of Health, who was inquiring about patients concerns stating,
“Most of the complainants belong to that impossible group of troublemakers, “Haemophilia Action UK” who would have some difficulty recognising the truth if it hit them in the face. They want money. The Haemophilia Society rightly regard them as a liability because their arguements are so unbalanced and they are so ready to lie that they lose all credibility. “
Since then many haemophiliacs in addition to Grayson and Longstaff have submitted evidence on testing without permission and withholding of positive test results which are now accepted as fact by the Infected Blood Inquiry.
Grayson went on to win two awards for her research on Contaminated Blood… The ESRC Michael Young Prize and the COTT Action = Life award with her husband for upholding truth and justice.
Returning to Treloars, over 72 former haemophiliac pupils have since died from their infections including both Peter and Stephen Longstaff. Over 3,000 haemophiliacs have died in total with many others harmed by their treatment. It is not only a scandal of how many haemophiliacs were used as guinea pigs and infected with deadly viruses but the appalling way they and their families were treated afterwards in their search for truth and fighting for justice.
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”.