‘They Just Said It Was My Mood. I Was Trying to Get Attention’: Exploring Barriers to Psychological Support for People Impacted by Contaminated Blood in England

ABSTRACT

Objectives

Between the 1970s and the early 1990s, over 30,000 individuals in the United Kingdom were infected with human immunodeficiency virus (HIV) and/or hepatitis C virus following treatment with NHS‐supplied blood and blood products, with devastating consequences. This study aims to better understand the psychological support needs of these individuals and their families, and to identify barriers to accessing support in England.

Methods

Forty‐one individuals infected with HIV and/or hepatitis C virus and 11 affected family members were interviewed, as well as 14 mental health practitioners and experts involved in psychological support services across the United Kingdom. Data were analysed using a thematic approach.

Results

Only a few infected and affected participants had received mental health support, and only just over half knew about the availability of funding for psychological support from the England Infected Blood Support Scheme. Participants identified a number of barriers preventing them from accessing support. These included personal and social factors such as family responsibilities, stigma and secrecy. Structural barriers to access were a lack of available mental health support, limited understanding among professionals of the contaminated blood scandal, discrimination in healthcare, and difficulties finding suitable therapists and navigating referral systems. When individuals managed to access support, it was often perceived as inadequate or ineffective. Practitioners also identified a substantial need for psychological support within the infected and affected communities, and described support provided as inadequate, with little guidance and limited availability of competent practitioners. Practitioners also emphasised the need for long‐term and tailored treatment approaches to address the profound mental and physical health impacts of infected blood.

Conclusions

Existing psychological support systems in England, both public and private, fail to meet the needs of infected and affected communities. Our findings show a substantial and increasing need for accessible, effective and individualised services.

Patient or Public Contribution

This study was carried out from August 2022 to August 2023, during the period when the statutory Infected Blood Inquiry was conducting public hearings and soliciting witness statements from people infected or affected by the contaminated blood scandal. A key consideration of our work was therefore the potential additional burden on participants who were asked to reflect on their experiences as survivors and/or bereaved family members of infected individuals within the broader context of the Inquiry. We were aware of the emotional weight this might place on participants. To address this, we collaborated with several organisations supporting infected and affected individuals in autumn 2022: the British Red Cross, the Haemophilia Society, the Hepatitis C Trust, the Terrence Higgins Trust, and the Haemophilia & Bleeding Disorders Counselling Association. Representatives of these organisations included individuals who had been infected themselves, as well as mental health practitioners. We held extensive discussions with these organisations on the contaminated blood scandal, the experiences of those impacted, and the support available. They also provided feedback on our draft research materials (information sheet and interview topic guide), which we incorporated into our final versions, and reviewed our findings. In addition, these organisations also acted as facilitators to engage infected and affected people to participate in the study, where this was possible.