Ella Rhodes reports on the Infected Blood Inquiry.
07 June 2024
'This disaster was not an accident' – these were the words of Sir Brian Langstaff on the publication of his report into the biggest scandal in the history of the NHS. Over the course of two decades 30,000 people who were treated with contaminated blood and blood products contracted viruses including Hepatitis C and HIV. 3,000 of those people have died – with that number still increasing.
A former High Court judge, Langstaff was appointed as Chair of the Infected Blood Inquiry in 2018 and since then he and his team have heard from those infected and affected by the scandal, campaigners, government witnesses, and expert groups including psychologists. His subsequent report not only shone a light on the harrowing experiences of those who were infected and their families, following decades of their vehement campaigning, but also outlined in stark detail a concerted effort by government and doctors to cover up the scandal.
'Successive governments compounded the agony'
In an event to launch his report, Langstaff pointed out that doctors and the government had been aware since the 1940s that blood could cause hepatitis infections. However, despite this, and subsequent guidance produced in the 1950s by the World Health Organisation which outlined ways to reduce the risk from blood, the UK made no effort to monitor or screen blood and blood products.
The NHS used plasma drawn from large pools of people – including US prisoners who are at increased risk of hepatitis and HIV. They also failed to give patients information about the potential risks of receiving plasma treatment or blood transfusions.
Langstaff said that people had put their faith in doctors and the government to keep them safe, but that their trust was betrayed. 'The NHS and successive governments compounded the agony by refusing to accept that wrong had been done. More than that, the government repeatedly maintained that people received the best available treatment and that testing of blood donations began as soon as the technology was available, and both claims were untrue.'
Many different patient groups were infected with blood and blood products including plasma. Around 1,250 people, including around 380 children, with bleeding disorders such as haemophilia were treated with blood products and were infected with HIV – many of them were also infected with Hepatitis C, B and D. Three quarters of them have died. The report says that between 2,400 and 5,000 people with bleeding disorders were infected with a hepatitis virus and developed Hepatitis C.
Around 100 of those given infected blood transfusions, during surgery or childbirth, or to treat thalassemia, sickle cell disease or leukaemia, were infected with HIV, and around 26,800 were infected with Hepatitis C. The report says that a significant number of people who received blood products, and some who had transfusions, have also been told they are at increased risk of developing Variant Creutzfeldt-Jakob disease (vCJD).
Not only were patients infected with these viruses – many were not told that they had been infected. Some patients were told about their diagnosis years later, some were informed in an offhand way by medical professionals who assumed they were already aware, and many were told about diagnoses despite having no knowledge of being tested for these viruses.
'To do full justice to the experiences and awfulness…'
As part of the inquiry Sir Brian Langstaff appointed expert groups to provide evidence on areas including AIDS, hepatitis, haemophilia, blood transfusion, immunohematology and psychosocial issues. Professor of Psychology as applied to Medicines at King's College London and Co-Director of the KCL/KHP Centre for Adherence Research & Education, John Weinman, was asked to convene a group to provide evidence on the many psychosocial issues arising from the scandal.
The group comprised of Professor of paediatric and adolescent psychology and lead Consultant Clinical Psychologist for paediatric and adolescent psychological services at University College London Hospitals NHS Foundation Trust Deborah Christie; Sian Edwards – a nurse who has worked in HIV care for more than 30 years; and Dame Lesley Fallowfield, Professor of Psycho-oncology at Brighton & Sussex Medical School, University of Sussex. Also, Professor Dame Theresa Marteau, Director of the Behaviour and Health Research Unit at the University of Cambridge, Professor Emeritus of Medical Sociology at King's College London Myfanwy Morgan, and Dr Nicky Thomas, a consultant Health Psychologist working in Haematology at Guy's and St Thomas' Hospitals Foundation Trust.
Weinman told me that the group was asked by the inquiry team to provide evidence on certain areas – including the broader psychosocial impact of infection, as well as more specific issues including poor communication from medical professionals about the risks from treatment and results from tests and the impact of not being told of diagnoses.
The group was also asked to write an additional report on the impact of childhood bereavement which Weinman and Christie worked on together. This covered areas including the social stigma on children of having a parent, or parents, with HIV during the 80s and 90s, the impact on children of not being told that their parent was terminally ill, and the impact of childhood bereavement on education and future employment.
Weinman and his fellow experts attended many of the inquiry hearings and listened to the testimony of those infected and affected, as well as reading transcripts from these hearings. He told me that it was during those hearings that he realised how appallingly people had been treated.
'As a health psychologist my expertise is in the psychological impacts of long-term illness, but this was in almost a different league because of the contextual aspects of it. People were infected because of so-called treatments and were treated very badly – both in terms of the cover-ups which came afterwards, and by the people around them due to the stigma of HIV and other infections. The impact that hearing this evidence had on me was really quite profound. I'd gone from knowing a bit about it to getting a true sense of just how appalling it was for all of the infected and affected people. You couldn't help but be moved and upset by what you heard – and outraged as well. This inquiry represents the first time in decades that people have started to be aware of what happened.'
Weinman said it was shocking to hear evidence of cover-ups, including evidence that some of those affected were asked to sign non-disclosure agreements following earlier compensation payments. 'It felt really important that finally a proper inquiry was taking place, and Sir Brian Langstaff was truly impressive. The way he dealt with people at the hearings, the level of empathy and concern he showed, and the commitment he had to doing the right thing – to do full justice to the experiences and awfulness of it all – was very powerful to see.'
The inquiry report was launched at an event in Westminster Central Hall which Weinman attended. 'The launch event was primarily for the individuals and families who had been infected and affected, and when Sir Brian Langstaff came into the room the 2,000 or so people in the audience stood and applauded him – which I think shows how important he had been. He emphasised that this report was only possible because of those in the audience. It was just truly impressive what he was able to do – to assimilate and incorporate all of the evidence, and be there as a champion for all these people who had suffered so much.'
I asked Weinman about what his involvement in the inquiry had told him about psychology's role in healthcare and in preventing scandals such as this in the future. He said that health psychology was very strong in the UK and it was important that the discipline continues to provide a better understanding the needs of people with particular illnesses and their experiences of healthcare as well as developing evidence-based interventions to facilitate adjustment to and recovery from illness and treatment.
'I think where there's more of an indirect effect of psychology, and particularly health psychology, is in the training of healthcare professionals. My original lectureship was in a medical school with my main job being teaching psychology as applied to healthcare – all medical and other health schools would have that in their curriculum but it tends to be fairly piecemeal. I think health psychologists have huge potential in the training of healthcare staff. That would include training in good communication, raising awareness of the psychological impacts of illness, the needs of patients, the issues that are raised by illnesses which might be particularly stigmatising or difficult, and also helping people to manage treatment and make sure they are getting honest and open shared decision making with clinicians.'
Understanding 'self-protection' mode
I also spoke to psychosocial expert group member Professor Dame Lesley Fallowfield (Brighton and Sussex Medical School, University of Sussex), who was similarly affected by working on the inquiry. She said that, despite working in psycho-oncology and often hearing about the sad experiences of patients experiencing cancer, nothing had prepared her for the harrowing accounts she heard from those infected or affected by this scandal.
'I read through hundreds of the witness statements and sat at the inquiry listening with increasing anger, outrage and despair to those still alive to share their quite awful recollections – the lies, stigma and discrimination suffered. When I got home I quite honestly wept a couple of times at the cynical, dismissive behaviour exhibited by so many of those healthcare professionals who had meant to care for patients and their relatives. The "cover-up" by successive politicians was also disgraceful.'
Fallowfield said she believed there was a role for psychologists in understanding why organisations go into 'self-protection' mode in the face of potential scandals rather than seeking to immediately rectify the situation – which can exacerbate the harms caused to people. 'Understanding the way that victims are sometimes treated by members of the public is another interesting line of research. It was striking how fear of the infectivity of the AIDS virus, for example, led to quite cruel and discriminatory behaviours from friends, schools and workplace colleagues of individuals.
'Psychologists also have a potentially huge role initiating emotional support services for those harmed and perhaps also for the perpetrators caught up in the cover-up who might have wanted to whistle-blow but did not… the old adage of bad things happen when good people choose to stay quiet.'
The need for sanctions
In a recent article in The Conversation Professor in Occupational and Organisational Psychology Anthony Montgomery (Northumbria University) explored why organisational cover-ups are so common. He wrote that in these scandals, institutions and corporations skilfully control the narrative until their bubble of lies bursts. 'Enforced transparency and a fair playing field could break this pattern.'
Montgomery also points to an absence of convictions or meaningful repercussions following almost all scandals, calling this 'abysmal'. 'Restorative justice has a role to play, but wilfully perverting the course of public justice needs to be sanctioned.'
He also points to the role of leadership and writes that we cannot depend on leaders to do the right thing if we educate them to put their mission first and people second. 'We promote and hire on the basis that leaders put their organisations first. The overused explanation of a "bad" culture being responsible for dysfunctional organisations simply means that everybody clearly understood the real vision and objectives, and committed to doing what was needed. The biggest lie at the centre of most organisational failures… is that something unexpected and unpredictable happened.'
SOURCE:
https://www.bps.org.uk/psychologist/bad-things-happen-when-good-people-choose-stay-quiet(accessed 9.9.24)
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