Lack of specialist mental health support is putting lives at risk, warns The Haemophilia Society

Written by Jessica Bomford, February 24, 2020

Lack of long-term specialist psychological support for victims of the contaminated blood scandal is putting lives at risk, The Haemophilia Society warned today.

Liz Carroll, chief executive of The Haemophilia Society, said money must be found to deal with the “desperate” need for specialist psychological support among those infected and affected by contaminated blood products across the UK.

The charity’s call comes as the Infected Blood Inquiry, which is investigating how and why the contaminated blood scandal of the 70s and 80s happened, today hears expert evidence on the psychological impact of the worst treatment disaster in the history of the NHS.

Ms Carroll said: “The Infected Blood Inquiry has meant that victims and their families are reliving the pain, grief and loss that they experienced 30 years ago, while at the same time discovering new, devastating, information about how those infections happened.

“This is having a catastrophic impact on people’s mental health. There is a desperate need for long-term, specialist psychological support and unless urgent action is taken I am deeply concerned that lives will be lost. We know from evidence already given to the inquiry that many victims have had suicidal thoughts – we must do everything we can to protect and support the most vulnerable in our community.”

The Haemophilia Society believes there should be:

  • a specialist government-funded UK-wide psychological support service easily accessible to anyone infected by contaminated blood or blood products and their families
  • experienced psychologists, psychotherapists and trauma specialists to staff this service
  • training so that all counsellors understand the specific challenges experienced by those infected and affected by contaminated blood products

Around 5,000 people with haemophilia and other bleeding disorders were infected with HIV and hepatitis viruses through the use of contaminated clotting factors in the 1970s and 80s. Since then more than 3,000 people have died and of the 1,200 people infected with HIV less than 250 are still alive.

Alan Burgess was infected with HIV and hepatitis C as a result of treatment with contaminated clotting factor for his haemophilia.

At the inquiry last year, Alan revealed he’d had a mental breakdown only months before giving evidence. He and his daughter Sarah spoke of the huge impact Alan’s infections have had on their family and their need for more support.

Alan, 61, from Suffolk, said: “Those infected and their families have never had the specialist psychological support we need. We were given our diagnosis 30 years ago and left to get on with it on our own.

“It is brilliant that we’ve finally got the inquiry, but it has created the perfect storm for me because I have had to go through a lot of my old stuff which brings back memories of all the friends I’ve lost to HIV/AIDS and hepatitis C who I miss so much to this day. We are dealing with what happened to us all over again, which is why we need specialist psychological support to help us to move forward with our lives.”

The Infected Blood Inquiry has a psychological support service run by the Red Cross for people attending inquiry hearings and also operates a part-time telephone helpline, but it does not offer long-term face to face support that many victims say they need.

Dr Joanna Nowill is a counselling psychologist and trauma specialist. She said: “The contaminated blood scandal has had a long-term impact on peoples’ lives. The shame and stigma of being infected with HIV or hepatitis C meant that many victims felt ‘unclean’ and unable to tell their loved ones what had happened.

“Some have tried to bury their story and are perhaps living with trauma symptoms such as intrusive thoughts, short tempers, high anxiety or sleeplessness without knowing why. Now that the Infected Blood Inquiry is allowing victims’ voices to be heard, many are finding it difficult to deal with the traumatic memories of loss and shame that are being brought back.

“Resources must be made available to fund the specialist, trauma support that many victims need in order to move on in their lives. If people are not given the help they are asking for, there is a risk that some will take their own lives, while others will carry on living miserably.”

The limited psychological support currently available to victims of contaminated blood varies across the UK. They can apply for a grant for counselling through the Infected Blood Support Schemes, but the process is bureaucratic and difficult to access. Victims have to find their own counsellor, who may not have the experience needed to deal with their traumatic history. The exception is Wales, which last month introduced a new system of psychological support through the Wales Infected Blood Support Scheme where victims and their families can refer themselves for treatment.

The issue of the need for psychological support was raised at a meeting last month between campaigners and ministers from the Cabinet Office and the Department of Health. Nadine Dorries, Minister for Mental Health, Inequalities and Suicide Prevention told campaigners she would look into the issue.

In January 2019 The Haemophilia Society wrote to then Minister for the Cabinet Office, David Lidington to raise the issue of “wholly inadequate” psychological provision for people affected by the inquiry. The Haemophilia Society also wrote to inquiry chair, Sir Brian Langstaff, through its legal representatives Eversheds Sutherland, in October 2019 to highlight the urgent need for long-term specialist support.

The Infected Blood Inquiry, which began witness hearings in April 2019, is not expected to complete its report until summer 2022.