Between 1970 and 1991, up to 33,000 people in the UK were infected with HIV and/or hepatitis C as a result of treatment with NHS blood and blood products. The statutory Infected Blood Inquiry (IBI), launched in July 2018, investigated the circumstances that led to individuals becoming infected, the impact of infection on those affected and their families, and the UK Government’s response, among other issues. A particular point of concern identified by the IBI relates to the psychosocial impacts and a perceived lack of access to dedicated psychological support for those infected and their families.
In England, the Infected Blood Support Scheme (EIBSS), administered by the NHS Business Services Authority, provides payments for counselling or talking therapy to registered infected and bereaved people as well as registered family members of infected people. The payment of £900 per year is available on application and can be renewed after review. By April 2023, just over 3,500 people were registered withe EIBSS, of whom the vast majority were infected people, 20% were bereaved partners and just under 3% were dependents. However, only a small number of beneficiaries tend to apply for payment for counselling; in 2021/22 only under 5% of beneficiaries had done so.
The reasons for the low update of psychological support payments are not clear. The Inquiry noted that the annual amount and the complex application process might explain some of the low uptake. Overall, there is a lack of robust evidence on the needs for psychological support among those infected and affected by infected blood and blood products. The need for this evidence has become more urgent with the Inquiry concluding in May 2024.
PIRU was commissioned by the Department of Health & Social Care to help fill this evidence gap and to inform and consider options for improving the existing offer of psychological support services for infected and affected people.
The study aimed to assess the nature and scope of the need for psychological support for individuals and their families affected by NHS-supplied infected blood and blood products and the requirements for psychological support to meet these needs.
Specifically, we sought to:
We conducted a qualitative descriptive study using in depth interviews with:
We complemented the work with a rapid review of existing documents of psychological support services for infected and affected people in place in Northern Ireland, Scotland and Wales to understand the range of approaches taken by the devolved nations. The document review was primarily intended to inform the interview with mental health practitioners and experts.
We consulted with several organisation providing support to affected individuals during autumn 2022, namely the British Red Cross, the Haemophilia Society, the Haemophilia & Bleeding Disorders Counselling Association, the Hepatitis C Trust, and the Terrence Higgins Trust, to help us shape the work. These organisations have provided feedback on our research materials (information sheet, interview topic guide, see below), which we have incorporated. The organisations also acted as facilitators to engage infected and affected individuals to participate in the study.
We conducted in-depth interviews with 52 infected and affected people and 14 mental health practitioners and experts to understand these needs and explore possible service improvements. The infected blood scandal had, and continues to have, a profound impact on the mental health and wellbeing of infected and affected people. Study participants shared multiple accounts of grief and loss, anger, fear and anxiety, guilt, and facing stigma, isolation and discrimination because of infection.
Only some of those interviewed for this study had been able to access and use psychological support services for their mental health over the years, and only just over half of the study participants were aware of EIBSS payments for psychological support. Some participants only learnt about the availability of the EIBSS discretionary payment during the research interview.
Identified barriers that prevented people from accessing counselling and psychological support included social and personal issues, such as feeling unable to open up, stigma and secrecy. But these personal barriers were frequently reinforced or exacerbated through encounters with the wider health system; study participants reported instances of discrimination in healthcare settings, which made it even more difficult for people to seek professional help.
Only a very small number of people found the EIBSS payment scheme for psychological support easy to work through. Most described this route as requiring substantial effort, and being physically and mentally unwell further exacerbated these experiences. Study participants described feeling burdened by the application process and reported that finding a competent and suitable practitioner was often difficult.
We conclude that existing psychological support services in England – whether accessed through the NHS or privately – do not currently meet the needs of infected and affected communities. Access to psychological support that is effective and experienced as tailored to an individual’s needs is not common and finding the right match between client and therapist is often down to chance. The report provides a range of recommendation of a future improved psychological support service might look like.