title: Psychological support for individuals historically infected with HIV and/or hepatitis C as a result of NHS-supplied blood transfusions and blood products, and for affected families
Creators: name: Cyhlarova, Eva
name: Carlisle, Jessica
name: Warren, Emily
name: Knapp, Martin
name: Nolte, Ellen
Publisher: name: Policy Innovation and Evaluation Research Unit
Year: 2023

description: BACKGROUND: Between 1970 and 1991, between 30,000 and 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; 2,900 deaths during 1970-2019 are estimated to be attributable to these infections, and people are still dying. The statutory Infected Blood Inquiry, launched in July 2018, has been investigating the circumstances that led to individuals becoming infected and the impacts this has had on them and their families. Among the many issues raised, the Inquiry emphasised the psychosocial impacts and the lack of access to dedicated psychological support for those infected and affected. The England Infected Blood Support Scheme (EIBSS) provides access to a discretionary payment of up to £900 for privately arranged psychological support per year (with the option of ‘further treatment’ funding), which can be accessed upon application. However, uptake of the payment among EIBSS beneficiaries and their family members has been very low, and the reasons for this are unclear. There is 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 autumn 2023. This study was commissioned 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. APPROACH 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. Interview participants came from a fairly broad age range and across regions in England, although there were a larger number of women and people identifying as White British than would reflect the UK population. Interviews were conducted between January and May 2023. PRINCIPAL FINDINGS: 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. About half of the people who participated in the study explicitly said they had experienced trauma, and most described incidents that have caused them significant distress. Additionally, many participants described further long-term ill health linked to the side-effects of their infection(s) and their treatments, which many described as having life-changing impacts on their wellbeing. Affected people also reported very significant impacts of their loved one’s infection on their own wellbeing, including profound emotional and financial consequences of bereavement. 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 2 of NHS-supplied blood transfusions and blood products, and for affected families – Final report 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. There is a substantial need for psychological support in the infected and affected communities, and this need is likely to increase once the Inquiry concludes. Practitioners working with infected and affected people cited instances where the Inquiry had already impeded the progress of clients working towards improving their mental health outcomes. Conclusions 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. Accordingly, a future improved psychological support service should: • involve infected and affected people with a range of experiences in the development and design of the psychological support service; • address the substantial distrust in and legacy of EIBSS and the wider health system to provide an effective service; • be offered as standard to all individuals known to be infected or affected, and not just upon application; • be proactive, reaching out to and encouraging individuals to take up support; • be accessible through various routes with self-referral important to empower people and reduce access barriers; • be inclusive and broadened to a wider group of affected people than is currently the case; • be flexible and agile, allowing infected and affected people to access the service when they need it and re-enter it without additional administrative burdens for them; • be compassionate, respectful of its clients and non-judgemental. • be set in a specialist setting, include assessment, and offer individual therapy as well as peer support; • offer a range of therapeutic modalities and delivery modes (in-person, online, telephone); • work with adequately qualified, accredited and registered practitioners who have experience of working with trauma-affected populations, understand long-term health conditions that impact mental health and vice versa, and, importantly, have sensitivity to, and knowledge about the infected blood scandal, and related conditions including but not limited to HIV and hepatitis C. The service should be of high quality, with appropriate mechanisms for oversight and accountability. It should be embedded in a wider support system that is proactive, so that those who face the highest barriers or who are most vulnerable are still able to engage and benefit from this support service. This includes the creation of a single contact point or person (a navigator) who assists individuals to navigate the health and social care system more effectively. A service that ‘does the work’ by proactively reaching out to infected and affected people was seen as an important way in which the government could begin to address the harm it caused.