(Image via the Inquiry)
On Friday the 28th July 2022, Susan Deacon gave evidence to the Infected Blood Inquiry chaired by Sir Brian Langstaff which is investigating how haemophiliacs became infected with HIV and hepatitis viruses through their factor concentrate, blood product treatment in the 1970s and 80s. (It is also looking at cases of infection through whole blood transfusions though this is separate to the case of haemophiliacs.) Deacon was the Member of the Scottish Parliament (MSP) for Edinburgh East and Musselburgh from 1999 to 2007 and served as Scotland’s first Cabinet Minister for Health and Community Care following the creation of the Scottish Parliament in 1999.
From the mid 90s/early 2000s there was growing pressure across the UK for a public inquiry as haemophiliacs were finally being told they had been infected with hepatitis C as well as HIV, in many cases, the positive test results only given to them several years after being tested for HCV. This resulted in deep concern and anger from haemophiliacs and pressure to find out more regarding the circumstances of their infections and why results had been withheld.
Over two decades ago, They Work For You reported the following question put to Deacon and her response.
Brian Adan SNP
Question S1W-5627 To ask the Scottish Executive whether it will commission an independent inquiry into hepatitis C and other infections contracted from contaminated blood products in Scotland
Susan Deacon Labour
A fact-finding exercise into specific aspects of this issue has been underway for some months now. I met with the Haemophilia Society in September 1999 to discuss their concerns first hand and thereafter tasked my officials with ascertaining the facts surrounding the heat treatment of blood products for haemophiliacs in the mid-1980s. This will assess whether haemophilia patients in Scotland were exposed to the risks of the hepatitis C virus through blood products longer than they should have been, given the state of knowledge at the time. The outcome of this investigation will allow me to decide whether any further action is warranted.
The Haemophilia Society, the Scottish National Blood Transfusion Service and the Scottish Haemophilia Directors have all been asked to provide information. My officials are currently analysing the information gathered. This is a complex area and it would be premature to comment on possible outcomes until all the facts have been properly examined. I have undertaken to make the findings available to the Health and Community Care Committee and to the public.
https://www.theyworkforyou.com/spwrans/?id=2000-04-11.S1W-5627.h#gS1W-5627.q0
For long standing campaigners that were around at that time, this was instantly problematic and the following gives a broad overview of campaigning between England and Scotland at a time when Scotland had become newly devolved but dealing with infections that had occurred under a UK wide Westminster government.
The then Haemophilia Society had been slow on the uptake regarding campaigning for hepatitis C. The Manor House Group (Founded by the late Peter Mossman and the late Peter Hughes), Haemophilia North (later known as, Haemophilia Action UK, this author’s group) and Colette Wintle (Independent Campaigner) had all begun campaigning within a week of each other in 1994. It took a further year for the Society to take hepatitis C seriously and then only under pressure from the groups and with great reluctance and resentment.
When Grayson called for “compensation on a parity with Eire” in 1996 writing to the Society on this issue, the Society looked at the Eire scheme then sold out asking government for a “hardship fund” as opposed to full and proper compensation. Haemophiliacs with HIV had already received an ex-gratia payment for their infection in 1991 but had been made to sign a hepatitis Undertaking named the “waiver” by Grayson not to take legal action for hepatitis infections. It was only later in 1994 that Grayson and her late husband Peter Longstaff were told that he was infected with hepatitis C though a test result obtained showed he tested positive in 1992.
Longstaff had been tested without pre test counselling, without his knowledge and permission using blood taken to measure his clotting levels and his positive test result had been withheld. In addition, they then found out that key evidence had been withheld from litigants on the dangers of this HCV virus within the HIV litigation documents which were already known to lawyers way before their clients signed the waiver. The couple then realized that in order to take a case to court for hepatitis infection(s) they must first access legal aid to overturn the waiver showing what had happened and that this couldn’t be deemed “informed consent”. This was the catalyst that sparked their setting up a campaign group in 1994.
When the Society did launch their campaign on hepatitis C in 1995, they then made a dreadful decision to divide the haemophilia community by campaigning only for those that had been infected with HCV but not HIV, this was despite the fact that almost all haemophiliacs infected with HIV were also infected with hepatitis C. At one point when Grayson tried to enter parliament to attend a campaign event, she was confronted by the then CEO who made clear she wasn’t welcome and stated that her husband “had had his money”. What Karen Pappenheim didn’t address, was that HIV positive haemophiliacs that were now under the Macfarlane Trust which provided financial assistance had not received a penny for hepatitis C, nor was it part of the Trust deeds. Jim Cousins, Grayson’s MP at that time came out of his office to escort her into Westminster Hall.
The Society were also refusing to look at key evidence from campaigners on many different aspects of hepatitis C including the delays in bringing in a test, the testing of haemophiliacs without their knowledge and permission and the withholding of positive test results. Despite offers from campaigners to work with the Society and share emerging evidence, this fell on deaf ears by an organization increasingly defensive in its position. There was a great deal of tension between the Society and campaigners at that time, not helped by what campaigners viewed as a “conflict of interest” in that the organisation received funding from the international pharmaceutical companies linked to their infections.
In this hostile environment, Grayson and Wintle decided to form a quiet alliance with Scottish campaigner Phil Dolan who was to become a trustee of the Society and in a sense a “spy in the camp” regarding the Society’s actions and thinking. There were some signs that Scotland might be slightly “softer” than Westminster in investigating the infection of haemophiliacs and providing recompense, so they hatched a plan to release evidence through Scottish media a day after key stories broke in Newcastle where Grayson and Longstaff had just formed the Bad Blood campaign jointly with journalist Louella Houldcroft of the Journal. A decision was taken that Grayson would share her evidence with Scottish journalists that could be used cross border but local Scottish campaigners would do the interviews to provide a picture of their own experiences of infection and the issues around this locally.
The Haemophilia Society at that time was not well informed, was half- hearted in its own campaign stance for fear of potential liability issues and aggressive to campaigners attempting to investigate what went wrong. The Society had actively campaigned to continue importing US factor concentrates against safety advice, even after the advise from Dr Spence Galbraith (Public Health Laboratory Service) was to withdraw this treatment from the shelves immediately in May,1983 to avoid infection of haemophiliacs with the AIDS virus. It was against this background that Deacon was engaging with the Society but we do not know how much of this information regarding the organization’s breakdown of their relationship with many campaigners would have been known to her at that time.
Deacon’s fact- finding exercise was limited in nature and focused mainly on heat treatment. It did not appear to give consideration to those who were very likely infected with hepatitis C through their first shot of imported US factor concentrates that had been used on children at York Hill hospital and any safety violations in that regard. As haemophiliac Colette Wintle discovered, imported treatment was used on her in 1976 whilst a patient at Glasgow Royal Infirmary despite a warning letter being sent to Westminster government official a year earlier warning of the dangers of using US plasma and the increased hepatitis risk due to “high-risk” paid donors being used.
One person who did understand the dangers of US products was Dorothy- Grace Elder, Member of the Scottish Parliament for the Glasgow Region 1999 to 2003 with whom Grayson had made contact and spoken by phone As a former journalist, Dorothy-Grace told this author she had become aware of the differences in the collection of US plasma from paid donors compared to those in the UK, blood taken from better screened, volunteer donors and was determined to raise this issue in relation to those treated in Scotland.
Worried that the Haemophilia Society would only have shared limited concerns with Deacon, and withheld campaigner’s evidence sent to them, Grayson decided to write to the minister offering the opportunity to meet her, with Dorothy-Grace included, to discuss evidence that might help push for a full public inquiry in Scotland.
Grayson has shared this letter to Deacon with the Inquiry and the text can be viewed here:-
02/07/2000. Carol Grayson,
PO Box 782,
Newcastle Upon Tyne.
NE99 2UW.
Re: Haemophiliacs Infected with Hepatitis C Through NHS Blood Products.
Dear Ms Deacon,
I was delighted to read an article in the Scottish Daily Record & Sunday Mail Ltd June 22nd 2000 that you are ordering a report into how people in Scotland contracted hepatitis C through blood transfusions. Yourself and Dorothy –Grace Elder are to be commended for the responsible attitude you are taking with regard to this issue. My MP Mr Jim Cousins (Newcastle) has supported my partner a haemophiliac infected with HIV, hepatitis B and hepatitis C through NHS blood products for several years now in our fight for a public inquiry and recompense. We lost my partner’s brother, also a haemophiliacs to AIDs in 1986.
I have enclosed a letter sent to Mr Milburn asking a number of pertinent questions to which I received the extremely unsatisfactory reply enclosed! I would be grateful if you in your capacity as Health Minister for Scotland could stress to Mr Milburn the importance of answering the questions put to him and ordering a public inquiry in England into how people became contaminated with these viruses.
May I suggest that you look at the Lindsay Tribunal currently taking place in Ireland (Tribunal updates available by e-mailing haemophiliasociety@eircom.net and requesting copies) and also the Krever report (Canada) if you have not already done so. Some of the information with regard to imported human plasma products is relevant to England, Scotland and Wales also. I think it is essential that any report looks at where the plasma was sourced. It is not good enough for the Department Of Health to claim that nothing could be done to avoid infection with HIV and hepatitis C prior to blood tests becoming available. As a qualified Senior Nursing Sister (although now a full time carer) I am appalled that plasma was collected from populations known to be “high risk” such as prisons with hepatitis infection rates 12 times higher than the general population. It was also collected from paid donors in centres in Central Africa (the epicentre of Aids), Central America, (Nicaraguans burnt their centre down it was so bad), skidrow “hotspots” of North America (highlighted in the “World In Action” documentary program “Blood Money” as far back as 1975) and at times from cadavers which is immoral and illegal.
I have collected substantial information on “tainted blood” over a number of years and would be happy to meet with yourself and Dorothy Grace -Elder at your convenience to discuss this. I feel much of this information has been suppressed as this information has far –reaching consequences for those involved in the multi-million dollar blood industry and could be very costly for our Department Of Health!
The pharmaceutical firms manufacturing blood products imported to the UK which should be looked into are Baxter, Hyland Travenol, Alpha Therapeutics, Green Cross Japan, Cutter, and Armour. Some are now defunct or have been taken over and changed their names. Prisons involved in plasma collection were Arkansas (licences renewed I am told by none other than the former Governor Of Arkansas, Bill Clinton), Angola Prison and Arizona State Prison. I am in touch with campaigners in Arkansas who can provide information from both prisoners who donated to the prison plasma program and people who worked at the plasma centre. I hope I can be of assistance in bringing to light the appalling practices with regard to the lack of safety and lack of checks /quality controls on imported blood bought by the Department Of Health which has resulted in so many needless deaths in the UK as well as the exploitation of poor, sick and vulnerable groups in other countries to provide plasma for the blood industry.
Canada now has a major criminal investigation into how so many of their haemophiliacs came to be infected with HIV and hepatitis C though imported American plasma. Canada, Italy and Southern Ireland are among those countries that have had public inquiries into their own blood services and imported treatment and provided compensation to infected haemophiliacs and their families, including widows and dependants.
My partner has just been granted legal aid against the Department Of Health! Over 1200 haemophiliacs were infected with HIV. 800 are now DEAD.
95% of those originally infected with HIV are also now CO-INFECTED with hepatitis C (HCV).
According to Haemophilia Society statistics over 4000 haemophiliacs are infected with hepatitis C alone. (MONO-INFECTED)
120 haemophiliacs are now DEAD from hepatitis C. The majority of these deaths were from the C0-INFECTED group.
Hepatitis C has now taken over from AIDs as the biggest killer of haemophiliacs in Europe and the United States.
Thank-you for taking the time to read this.
Yours sincerely
Carol Grayson (Campaign Co-ordinator Of The 2/2 Campaign, A Second Campaign For A Second Injustice.)
Tragically, Deacon (or those in her office) did not take up Grayson’s offer and an opportunity was missed to view important evidence that should have led to a full public inquiry, evidence now being used by the Inquiry to question key witnesses.
Dorothy-Grace continued to raise her concerns over blood safety highlighted during the Health and Community Care Committee meeting on the 25th Oct 2000 attended by Susan Deacon where the following exchange took place,
Dorothy-Grace Elder:I lived through the 1980s—
The Convener:I think we all did—even Duncan Hamilton.
Dorothy-Grace Elder: I clearly remember being involved with the people who were clamouring for a heat treatment centre in Scotland. The concern was HIV, not hep C, which, as the minister correctly says, was not recognised until 1989. However, people realised that they had something exceedingly dangerous on their hands and that, often, another virus was involved. I also remember that the sums of money involved came to only a few hundred thousand pounds and that Scots pleaded with the Conservative Government to give them that to conduct the heat treatment. How can the Government today body swerve the tragedy that has occurred due to hep C subsequent to the HIV tragedy? Will the minister at least consider ex gratia payments to the families?
The Convener:Would those be technical ex gratia payments, Dorothy-Grace? I really do not think that that was a technical question. Other people are waiting to ask non-technical questions.
Dorothy-Grace Elder:People are suffering, Margaret.
The Convener:I know. The minister may answer the question.
Susan Deacon:Do you want me to answer Dorothy-Grace Elder’s question now, convener?
The Convener:Yes.
Susan Deacon:Members are asking a range of technical questions, many of which, I hope, are addressed in the report. If the committee wants to take it up, the offer remains for one of our medical advisers or perhaps the deputy chief medical officer, who was involved in the report, to come along to discuss the matter further.
Dorothy-Grace Elder referred to ex gratia payments. Compensation has been discussed quite fully. Let me differentiate between negligent and non-negligent harm. The essence of the report was to investigate whether there had been negligence during the period in question, which would require the NHS to pay compensation on the ground of harm having resulted as a consequence of negligence.
Having examined the information carefully, we have found no evidence to suggest that there was negligence, for the reasons that we have outlined and, as Richard Simpson indicated, because of the chronology of events and when medical and scientific knowledge advanced.
There is also the question of non-negligent harm. The NHS not paying compensation for non-negligent harm has been a generally held principle. That was revisited in these cases, two years ago by the UK Government, by previous Conservative Governments and now by the Scottish Executive.
Having examined the issue we do not see there being a case to change that principle in this instance. I am bound to say that all medical treatment carries a degree of risk. The issue is about the balance of risk and how we deal with it.
Dorothy-Grace Elder:We are not talking about treatment.
The Convener:Let the minister finish.
Susan Deacon:I am happy to take a further point from Dorothy-Grace Elder.
The Convener:But I am not. Nicola Sturgeon also has points to make on this issue.
By the 1st February 2001, a significant event had already taken place over the border……….a small step on the road to justice for at least one haemophiliac given US factor concentrates in Scotland.
One New Zealand child visiting his relatives in Scotland and infected with HIV in 1980 at York Hill hospital after bleeding whilst on holiday had received a settlement direct from a US pharmaceutical company. The father of the boy, Ian Reddie, had come to England and approached Grayson for advice on tracing medical records from York Hill and a search was put in place. Subsequently armed with the evidence he needed (and keeping in mind his son had never received factor concentrates before his visit to Scotland), he flew to the US to confront the company and they paid up for the boy’s infection for both HIV and hepatitis C, albeit a low amount.
On 14th March 2001 Dorothy- Grace again tried to highlight her numerous concerns regarding safety of both Scottish and US products at the Health and Community Care Committee. The following are excepts from her and other participants as follows:-
Dorothy-Grace Elder: I dare say that you have
read the written statements of the Haemophilia
Society. Can you comment on the fact that
approximately 400 haemophiliacs in Scotland
depend on the safe factor VIII? Could it not have
been considered the duty of the Scottish National
Blood Transfusion Service to adopt the tested
heat-treatment methodology that was used in
England?
Angus Macmillan Douglas: I shall ask Peter
Foster to answer that in detail in a moment. Let
me first clarify your question, which I did not hear
properly as the door opened and closed in the
middle of it. Are you asking why Scotland was not
able to introduce the hepatitis C-safe factor VIII
product in autumn 1985, although it had been
introduced for a minority of patients in England?
Dorothy-Grace Elder: Yes.
Further on she attempts to raise questions on the use of US blood products in Scotland as follows:-
Dorothy-Grace Elder: Convener, may I ask—
The Convener: No.
Dorothy-Grace Elder: —about American blood
imports—
The Convener: No.
Dorothy-Grace Elder: —of skid row blood—
The Convener: I said no, Dorothy-Grace
Dolan also contributed,
Philip Dolan: First and foremost, we believe
that an independent inquiry would examine all the
issues that have arisen in the contamination of
blood products.
(Phil Dolan would later be awarded an MBE for his services to haemophilia.)
Another old friend of this author also spoke out, the late Patricia McAughey who shared information from the Haemophilia Society on so called campaign updates as a Scottish representative (another “spy in the camp”). Pat’s husband, John (also now deceased) was to later share some of his recombinant treatment with Grayson’s husband which was kept in the event of an emergency bleed when the Newcastle Health Authority refused to supply this on the grounds of cost resulting in Longstaff taking his case to the High Court in London. (The Judicial Review was lost on the grounds that it would open the floodgates for other treatments beyond haemophilia if the case was allowed to go through and a precedent set.) Grayson would catch a train up to Scotland to receive this treatment when Longstaff was on treatment strike refusing human plasma products highlighting the need for ALL haemophiliacs to be given recombinant not just a select few through post code lottery. Here is McAughey’s comment,
Patricia McAughey (Haemophilia Society):
My husband has severe haemophilia A and
hepatitis C. His treatment was changed in 1980
from cryoprecipitate to factor VIII. We were given
absolutely no warning that that product could
transmit any viruses. Had he been given a
warning, he would not have taken the treatment. It
is false to say that all bleeds in haemophiliacs are
life-threatening—they are not. They are
uncomfortable, painful and troublesome, but not all
are life-threatening. Haemophiliacs can usually
distinguish between what will be a troublesome
bleed and what will be a serious bleeding episode.
I can speak only for my husband and me, but had
we been warned of the risks, we would not have
taken the factor VIII.
Dorothy- Grace was not one to give up and continued her questioning, with Dolan chipping in to support.
Dorothy-Grace Elder: That is one of the points
that I wanted to close in on. The submission says
that the original remit of Susan Deacon’s internal
inquiry was far too narrow, because it focused
almost exclusively on the SNBTS. The word
negligence has been used. Do you want the
inquiry to be widened into a public inquiry,
involving bodies such as the Scottish Office—as it
was at the time—the Department of Health in
London, clinicians and political decision makers of
the time? Nodding your heads is good, but will you
answer ―yes‖ for the Official Report?
Philip Dolan: The answer is yes. We asked for
that when we met the minister on 14 September
1999.
Dorothy-Grace Elder: What input did you have
to the remit? Who decided the narrowness of the
remit? Did you request of the minister that bodies
such as those that I mentioned should be
involved?
Philip Dolan: Initially we asked for a public
inquiry. We had no further discussion with the
minister after we asked for that. The minister said
that the new Scottish Executive and Parliament
would be transparent and that everything would be
out in the open. However, the inquiry was not
transparent. We did not get the opportunity for a
public inquiry. To this day, I still do not know who
the author of the report was. We can only
speculate on that.
The Convener: Another point has not been
dealt with. The report was significantly delayed. It
did not come back when we expected it to.
Dorothy-Grace Elder: I want to ask a quick
question. As has been mentioned, Mr McKissock
is too ill to be here. He intended to deal with the
matter of compensation.
The Convener: I am sorry, Dorothy-Grace. One
of your colleagues will deal with compensation;
Shona Robison will come to it in a second. John
McAllion will ask the next question.
The full discussion can be read here,
https://www.parliament.scot/api/sitecore/CustomMedia/OfficialReport?meetingId=1728
This week, Katie Scott QC at the Infected Blood Inquiry did ask a question filed through Grayson’s legal team and probably others, regarding whether Susan Deacon regretted not meeting more campaigners when she was in office. Deacon indicated that she did.
It is one of the great myths surrounding the Contaminated Blood scandal that key evidence was not available until a new campaigner Jason Evans emerged in 2017 to “discover” incriminating documents, Far from it! Certainly from 1994, campaigners were beginning to build up a mass of documents including accessing the evidence on government decision making, policy and practice from the HIV litigation. They had important papers from the 1996 settlement in Eire and key evidence from legal cases won in the US and Canada. In addition they had acquired some UKHCDO minutes, evidence of experimentation on haemophiliacs and information was being gathered from medical records and international journals. Then there was Douglas Starr’s book, Blood: An Epic History of Medicine and Commerce published in 1999. Grayson’s mother had read a review when it first came out and sent it to her which again helped to open her eyes especially on the practices of the US pharma companies.
What is also disturbing is how so many within the media have reported badly rehashed stories minus any proper referencing and ignoring the dates the original evidence was presented by long standing campaigners to government ministers. They have rewritten history in a way that has helped those responsible for the scandal and for the most part failed to deal with written complaints for media corrections from members of the haemophilia community. This is by design not accident as editors have repeatedly been shown evidence of the correct and far earlier dates of discovery that they do not want to acknowledge or publish.
It wasn’t a question of having nothing with which to tackle ministers, doctors, UK authorities and pharma companies from the 1990s onwards but that papers were either not passed to politicians, were sat on by civil servants and not addressed, or were deliberately blocked. To repeat the words of Andy Burnham, former health secretary, “this is a criminal cover-up on an industrial scale.”
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 