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Campaign for specialist psychological support

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

That’s why we’re campaigning to get easily accessible, long-term, specialist mental health support for victims of the contaminated blood scandal and their families.

The Haemophilia Society is asking for:

  • 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.

Why now?

The Infected Blood Inquiry has meant that many people infected and affected by the contaminated blood scandal have been re-traumatised by their memories of that devastating period in their lives.

We believe that as the inquiry goes on, the pressure on peoples’ mental health will increase. Evidence from clinicians and politicians and other decision makers could be particularly traumatic.

Everyone has their own view on what the outcome of the inquiry should be. When the report is published, some people may find outcome hard to deal with.

There is an urgent need for mental health support now. We cannot wait until the end of the inquiry for specialist help.

A personal view

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: “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.”

A psychologist’s view

Dr Joanna Nowill is a counselling psychologist and trauma specialist. She believes more resources should be made available to fund specialist, trauma support to allow people to move on with their lives.

She said: “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.

“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.”

What mental health support is available?

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.

Psychological support is very patchy across the UK. Grants are available through the infected blood support schemes, but there is a lot of form-filling required and many vulnerable people are put off applying for funding.

The exception is Wales, which in January 2020 introduced a new psychological support service through the Wales Infected Blood Support Scheme where victims and their families can refer themselves for treatment.

There is also one specialist counsellor based at the Royal Victoria Hospital in Belfast.

What are politicians doing?

The issue of psychological support has been raised a number of times to politicians directly and through evidence given to the Infected Blood Inquiry.

In January 2019 The Haemophilia Society wrote to then Minister for the Cabinet Office, David Lidington raising concerns about the “wholly inadequate” psychological provision for people affected by the inquiry. He replied that the inquiry would monitor demand for its support service.

Psychological support was discussed at a meeting in January 2020 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 March 2020, The Haemophilia Society wrote to Ms Dorries asking her to trigger action on psychological support. You can read our letter here.

What has the Infected Blood Inquiry heard?

Since April 2019, there have been almost 200 personal testimonies from those infected and affected, many of whom described the devastating psychological impact of their infections and resulting treatment on either themselves or their loved ones.

In February 2020 the Infected Blood Inquiry heard evidence from experts in HIV, psychology, bleeding disorders and hepatitis C, who all confirmed the significant psychological impact of being infected as a result of contaminated blood and blood products.

Having heard the expert evidence in February 2020, inquiry chair Sir Brian Langstaff publicly highlighted the importance of psychological support and said he “expected” that “proper support” would be in place by the time he writes his final report, which will probably be in early 2022.

If you are interested in the issue of psychological support or have a personal experience to share please contact our public inquiry team at publicinquiry@haemophilia.org.uk