Peter Longstaff and his younger brother Stephen as children rescuing birds from an oil slick on the beach. Both went on to die as a result of receiving contaminated blood
(Image via Hartlepool Mail)
Over the years author of this blog, haemophilia campaigner, Carol Anne Grayson, sent a number of letters and emails on the Contaminated Blood scandal to Jeremy Hunt when he was Secretary of State for Health. Grayson’s husband Pete and brother in law Stephen were infected with HIV and hepatitis viruses during the 1970s and 80s through imported US factor concentrate treatment for their inherited bleeding disorder, haemophilia. Much of this treatment came from high risk donors such as prisonersm gay men, drug addicts, sex workers and skid row donors with plasma pools reaching as high as 400,000 donors far higher than was originally thought.
The boys attended Lord Mayor Treloars College for children with disabilities as boarders at different periods and were part of experimental treatment trials. Both have since died as a result of receiving contaminated blood, Stephen in 1986 and Pete in 2005.
After Lord Hunt received the following letter dated 26th January 2016 via Grayson’s MP Nick Brown, Grayson noticed a distinct change in attitude from Hunt who had for some time been resistant to considering a public inquiry. Documents later released at the request of Hunt to Grayson showed that he went on to write to Theresa May to call for a public inquiry after discussing it with his department. On the 11th July, 2017, May announced that government was finally willing to to hold a public inquiry which has become the Infected Blood Inquiry chaired by Sir Brian Langstaff and which commenced in 2018.
RE: Haemophilia Holocaust… a Nazi- style system which abused haemophiliacs from the cradle to the grave
Dear Jeremy Hunt,
I am writing to you with some specific and important questions to which I require answers. You may or may not be aware that as well as a widow I am also a researcher and critiqued the government’s report “Self-Sufficiency in Blood Products in England and Wales A Chronology from 1973 to 1991” for which I received the Economic and Social Research Council (ESRC award) in the name of Sir Michael Young. The DOH report (from unknown authors) was alleged to be the definitive report, yet it is greatly lacking with much evidence missing or excluded from the research. I was fortunately able to obtain copies of some of the so called missing or shredded documents to challenge some of the findings. Link to report below,
My attention is drawn to the fact that although the report chronology begins in 1973 there is nothing of significance on the first treatment trials carried out on the “captive” boys at Lord Mayor Treloar School, Alton in Hampshire (a so called centre of excellence) in the 1970s who were put on initial trials of the newly imported US factor concentrates. My late husband was one of those boys.
Again you may or may not be aware that the 70s was a dark period for the school with a culture of extreme bullying of children with disabilities or “cripples” as they were called back then. Not only this, there was a culture of physical and sexual abuse. This was confirmed when my husband received a letter not long after we first got together from a man linked to the school on his deathbed who wrote to my husband (letter was forwarded to him) saying how sorry he was for not speaking up at the time. (Speaking up by some resulted in changes for the better by the 1980s but it was too late for some). Within this setting the factor concentrate treatment trials took place, the boys were the guinea pigs for the Department of Health whose policies introduced the treatment, the pharmaceutical companies who provided the treatment and the doctors who carried out the trials.
I would remind you that US factor concentrates were sourced from tortured US prisoners at Arkansas, Louisiana and other state prisons, who were often known drug users, practising unsafe anal sex and high risk for viral infections. In addition there were multiple other safety violations recorded. Treatment batch numbers were traced back by lawyers to infected donors. The first hepatitis outbreaks soon hit the school as pupils/patients were used to cryoprecipitate from a handful of unpaid donors not large plasma pools of paid prisoners of up to 50,000 which included gay donors from the San Francisco “bath houses” where they also used to collect plasma.
Please tell me the name of the medico-ethics committee that allowed treatment trials at the school (and any other places in the UK that participated in early trials) and release the documentation which of course is essential and a legal requirement for treatment trials.
Please inform me point by point how the DOH, doctors, pharmaceutical companies ensured all 10 points of the Nuremberg were strictly adhered to and release the relevant paperwork from that era. The code dates back to 1948.
Who passed the treatment trials, followed up the boys and took action and notification when serious hepatitis outbreaks occurred at the school?
How many boys were on the trials, who was responsible for consent forms, what were parents and boys told?
This is essential given your previous letter detailing the paternalistic culture of the day. A paternalistic culture is very different to rules and regulations adhering to the Nuremberg Code. I would remind you I went to Auschwitz as part of my research to compare experiments.
Please refer to Nuremberg Code by name in your letter as the last one avoided doing so. I hope this was an oversight rather than deliberate. Please also read the following article on treatment at Lord Mayor Treloar.
“Justice fight for pupils of Treloar College who were killed by tainted blood”
http://www.express.co.uk/news/uk/592179/blood-hiv-treloar-college-scam-nhs-medicine-positive-hiv
Here is a comment from a public thread on the school I have removed the name of the persons,
Boy 1
“Yes it was disgusting what went on down there. I can give you plenty of instances where they had no regard for pupils feelings. The art teacher who pointed out to all my “classmates” that I had a harelip and therefore was “uneven” much to their laughter. The female member of staf who grabbed me by the throat and slammed my head against a wall over a second hand account of an arguement I’d had with another boy. The housemaster who did not inform my parents that another boy had attacked me so viciously that my glasses cut my ear and then went round telling everyone else I hadnt told my Father. The science teacher who just turned his nose up at all the boys with some sarcastic remark.. The teacher who mimicked a minor speech defect I had untill half the school was doing it..I could go on but I think you get the picture.
Also, when I started at LMTC although the haemophiliacs were the largest single group this was also the time that the kids affected by thalidomide were at secondary school age and some of them went through the school in my year. Some had artificial legs, others were in wheelchairs. In those days artificial limbs were not nearly as sophisticated or strong. I recall one lad “K” as being in my class . He had the flipper type arms and legs which were commonly associated with their tragedy.
One day in class..(french to be precise), the eccentric teacher of the time hit “K” around the head.(jokingly as I recall) with an ancient and heavy book called a larousse. What this was i don’t know but when the blow landed “K” seemed to stagger slightly and then with a snap and a crash, one of his artificial legs broke and he ended up sat there on the floor with legs and trousers disconnected and sat there scratching his head with one of his two fingers and wearing a most bemused expression on his face. He took it in good heart however and someone took him back to the house in a wheelchair for him to put a spare leg on.”
They had obviously not learnt any lessons from the 1975/76 outbreak of hep b when they didnt tell us anything then either. Just made all affected boys walk up to the canteen staff and hand over their own plates with a red spot on them..the plates that is.
I do recall one of my few friends there..A…… ..waking up jaundiced and ill in the bed next to me one morning with that..the day of one of those degrading school medicals.
Andrew died in 1996..
Boy 2
“Hi I am finding your stories whilst at Treloar’s very smiliar to my own having gone to a day school for people with disabilities. Some of the things that happened were horrendous and as for bullying, well unfortunately I was the main target. Once I was shuffed in one of those half moon metal waste bins that used to be fixed on the walls. It was mainly the toilet was, bum would go in first and arms and legs folded up. I remember sitting there patiently waiting for someone to find me all during assembly – I was a quiet kid and was intimidated alot, so if someone said don’t make a noise, you will get it worse, I would be quiet as a mouse. My nickname at school was penquin because of the way I walked.”
Boy 3
“But yes your completely right about the bulying that went on Treloars & yes it was still happening through my school days there. Sometimes it’s eats you up but in balance were away from there now & I have (as I hope you may have) made some amazing friendships (that I’ll treasure forever) from there that continue to this day.
In all the wrongs & rights of Treloars in General (which is a vast & complicated subject) I whole heartedly agree that they should have recognised the bullying problem and dealt with (esp by some of the staff as well as the pupils). There was pretty messed up guys at that place & that also made life quite difficult looking back.
An acknowledgement that Treloars handled that side of things very badly should also presented but I doubt this will ever happen.I’m also aware that the bullying when you were there was far more serious & quite soul destroying, as I knew some guys who were there pre 82′.”
Boy 4
“So many sad sad stories where peoples lives have been destroyed, This is disgusting and should not have happened but the fact of the matter is that it has, innocent people have died through no fault of their own, those people being my friends and yours and it is just not acceptable, it really does make me so agitated. While at treloars i developed Hep C along with other haemos, again innocent people suffering through no fault of their own.”
Boy 5
“Dear All,
can only assure you of my own particular case which was as follows.
I had never seen or heard of FactorV111 let alone used it before Lord Mayor Treloar College. My parents did not know of it and were certainly never asked for consent.”
(Writes poem about his experience)
Is it just me or am i mistaken,
words seem to lose meaning or get lost in translation.
Take the word ”concentrate,” is it the same as ”concentration?”
”college” or ”camp,” ”experiments,” ”non consent” or ”legislation.”
Call it a ”camp” or call it a ”college,”
experiments WERE done without our knowledge.
I note Andy Burnham former Secretary of State for Health referred to “negligence” earlier this year in parliament in relation to contamination of haemophiliacs with HIV/HCV and Andrew Gwynn also referred to “negligence of public bodies” in the House of Commons last week, both on video. Prior to this at the time of Archer privately funded Inquiry whose recommendations you largely ignored, I was approached by a key advisor to the government admitting his “negligence” with respect to decisions over US treatment. Lawyers used to tell us, “negligence means compensation” not an increase in an ex-gratia payment.
You now have an opportunity to do the right thing and compensate properly as Eire did… except they never used the word negligence so politicians here have actually gone one step further. I also have a document written by a lawyer for haemophiliacs saying the chances of winning for those who had taken US factor concentrates had significantly improved (this was just prior HIV settlement) and was never shown to haemophiliacs who were signing the next day … and this was before we started working on the Nuremberg Code. The lawyers said he could no longer lie to his clients and it appeared some deal was being done to keep the government out of court!
Regarding payments…tell me what would an average pay –out be for vaccine damage for example? I will check it out. I will tell this you, a widow whose husband was infected with vCJD and later died received £3.2 million in compensation… I don’t understand why haemophiliacs and their families are given so minute a payment compared to this?
If you really don’t know what has gone on with regard to the history of contamination in our community (as Andy Burnham said he didn’t when he took office in health due to position of civil servants) then I suggest you meet with someone who has researched this issue in great detail …me perhaps with a campaign colleague and the Chair of the Haemophilia Society so we can discuss the matters arising.
Violating the Nuremberg Code on not one but 10 points is a very serious issue for a government or did the UK abandon both its promise to uphold this and all human rights for haemophiliacs simply because they thought they would get away with it… that vulnerable people would never fight back?
Could you refer me to the specific part of the Nuremberg Code that said it was OK to bleed, sick dying, virally infected and even tortured prisoners because we have evidence of this due to the support of prisoner’s families in the US. To collude and profit from torture is surely a criminal offence!
Let’s face it, “the worst medical treatment in the history of the NHS” and no public inquiry from government when far lesser matters have warranted a full investigation… quite bizarre!
I look forward to your response. I want to hear about the legal and ethical aspects of the first trials in the UK not about “paternalistic cultures” which actually DON’T feature in the Nuremberg Code guidelines!
Yours sincerely
Carol Anne Grayson
The article on the release of documents at the request of Hunt to Grayson can be read on the following link from the Newcastle Chronicle by Sam Volpe dated 30th March, 2022,
Government changed its mind on Infected Blood Inquiry ‘because of pressure from campaigners’
Documents released to a Jesmond campaigner show why the Infected Blood Inquiry was announced on July 11 2017 – and explain the reasons which saw the Government change its mind
Hunt later went on to give evidence to the Inquiry as highlighted in this BBC article from 27th July, 2022
Jeremy Hunt calls contaminated-blood scandal a huge failing of democracy
https://www.bbc.co.uk/news/health-62325578
Today, 28th July 2023, Hunt will again be called to the Inquiry in his role as Chancellor with haemophilia campaigners calling for Hunt to implement the full recomendations on compensation as written by Sir Brian Langstaff.
Infected blood inquiry: Jeremy Hunt to be questioned in worst treatment disaster in history of NHS
He will be quizzed over much-delayed compensation scheme for thousands of victims
https://www.independent.co.uk/news/uk/politics/jeremy-hunt-nhs-infected-blood-inquiry-b2383447.html
Haemophiliacs and their families await to hear whether Hunt will respond in an empathetic way to what Lord Winston described as “the worst medical treatment disaster in the history of the NHS” now considered a major scandal and finally deliver.
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”.
Carol Anne Grayson (Radical Sister) blog 