‘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

Cyhlarova, Eva ORCID: 0000-0002-1755-6676, Carlisle, Jessica ORCID: 0009-0004-2453-6069, Warren, Emily, Knapp, Martin ORCID: 0000-0003-1427-0215 and Nolte, Ellen (2025) ‘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. Health Expectations. ISSN 1369-6513 (In Press)

Text (Cyhlarova et al_Barriers to support for contaminated blood_Manuscript_200525) - Accepted Version Pending embargo until 1 January 2100. Download (439kB)

Abstract

Objectives Between the 1970s and the early 1990s, over 30,000 individuals in the UK were infected with human immunodeficiency viruses (HIV) and/or hepatitis C 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 and 11 affected family members were interviewed, as well as 14 mental health practitioners and experts involved in psychological support services across the UK. 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.

Item Type:	Article
Additional Information:	© 2025 The Author(s)
Divisions:	Care Policy and Evaluation Centre LSE Health Health Policy
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Date Deposited:	20 May 2025 08:21
Last Modified:	21 May 2025 10:12
URI:	http://eprints.lse.ac.uk/id/eprint/128145

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