Key Findings and Recommendations This review set out to ascertain the peer support needs of people living with HIV incarcerated in UK prisons. Positively UKâ€™s peer support programme aims to promote physical and emotional health and wellbeing, complementing clinical care. Peer support, therefore, must be reviewed in the wider context of structures supporting people living with HIVâ€™s care.
Despite successive Governmentsâ€™ commitments to equitable healthcare for people in prison with that received by the general public receive from the NHS, the implementation of healthcare and HIV care in prisons is variable and in many cases substandard. Incarcerated people living with HIV can face long waiting long times for clinicians, be denied access to essential medications and have confidentiality breached during clinical appointments. These issues are exacerbated for new arrivals and individuals being transferred from other prisons.
The clinical staff providing care for people living with HIV incarcerated varies according to each establishment. In cases of best practice specialist HIV teams will provide clinical sessions within the prison providing a multi-disciplinary approach to healthcare. In other prisons healthcare is provided by clinical staff that provide general care but are not specialised in HIV, raising two areas of concern. Firstly, as with all general practice, the need to ensure any drugs prescribed do not interact with HIV medications. Secondly, people living with HIV need to be taken to hospitals to receive specialist care under supervision of a prison guard, this often results in missed appointments when prison staff are unavailable. Where further investigation and time is required, effective care can be hindered by the urgency to return to the prison. There are also breaches of patient confidentiality when guards insist on remaining chained to the patient and in the room during appointments. The latter can easily be remedied by using a long chain and the guard staying outside the clinical room; unfortunately this good practice does not always occur.
Prison Service Orders that set standards and protocols within prisons focus primarily on staff and not sufficiently on the people incarcerated. In addition, many of the orders were issued over a decade ago and as a result are out of date, particularly in areas such as HIV medications.
Sexual health guidelines such as those produced by BASHH (The British Association for Sexual Health and HIV2) set out best practice around HIV and Hepatitis but there is a lack of conviction across the prison system to implement such guidelines. As a result the implementation of practices supporting the best sexual health of people incarcerated is inconsistent across prisons and inadequate. A directive for implementation needs to be put in place.
There is still discrimination in society towards HIV, and stigma is one of the one of the biggest concerns of people accessing services in general at Positively UK. Within the confines of the prison system these concerns are magnified. People living with HIV incarcerated live in fear of breaches of their confidentiality and the resulting discrimination if their HIV status becomes known to staff and other prisoners. There are recorded incidents of bullying and ostracism by other prisoners. There is a need for greater HIV awareness in prisons and protocols around protecting confidentiality.
There is a link between people living with any long-term medical condition and the strain this places on emotional well-being. Living with a stigmatizing condition such as HIV and being unable to talk to anyone about it within the prison can have a severely detrimental effect on peopleâ€™s mental health. Peer support was considered vital by the people living with incarcerated who contributed to this review. The peer workers supported physical and emotional health and well-being, and in many cases provided the only opportunity people had to talk to another person about their status.
As a result of HIV related stigma, many people incarcerated will not inform other support services, such as drug rehabilitation programmes, that they are HIV positive. HIV support services can provide the lynchpin in understanding the full range of issues affecting the person incarcerated. As a result these services are best placed to support the person to manage complex issues, ensuring they are accessing the full range of support both in prison and upon release.
Prisons, and those commissioning support in prison, need to recognise the importance of HIV peer and emotional support and ensure these services are in place.
BASHH, National guidance on commissioning sexual health and blood borne virus services in prisons 2011
Findings from Interviews with (ex) prisoners, healthcare staff and NGOs
All surveyed were adamant that having prison officers present at consultations between healthcare staff and patients broke patient confidentiality and was a serious issue.
Clinicians cited that having prison officers present hindered consultations and ultimately patient care. For instance patients would not disclose recreational drug use in front of a prison officer, preventing issues such as harm reduction and interaction with medications being addressed. One health practitioner stated that issues often arose when it was an inexperienced prison officer in attendance and that ‘usually the situation is resolved by using the long chain allowing the officer to wait outside the room’. The majority of clinicians stated they simply refused to see patients if an officer were present and ensured that if the patient could not be released from handcuffs that the long chain was used.
Confidentiality was considered a greater issue by people living with HIV. All who contributed to this report stated there was ‘no confidentiality’ in prison. One inmate told how a nurse had informed another inmate of the type of medication she was receiving, thereby breaching confidentiality and disclosing her HIV status. While healthcare practitioners who responded to this survey were ensuring privacy by refusing to admit prison wardens to patient consultations, this practice is not followed by all. People living with HIV questioned in this survey reported incidents of prison officers being present during medical consultations. A person currently incarcerated stated that having to explain medical and private details in front of a prison warden left her highly degraded and was ‘emotionally upsetting’. This is a breach of her right to dignity and privacy.
The major concern amongst clinical staff was the lack of awareness of ARV’s and the importance of adherence by nurses within prisons. Access to treatments could be sporadic and there were issues around adherence, particularly when prisoners attended court as prison rules state they are not allowed to take medications with them. This policy and practice increases the risk of people living with HIV missing a dose.
Dispensing treatments within the prison also has implications on
confidentiality; if administered in bulk to the prisoners the patient at least has access to medications and are responsible for adherence, however many fear the drugs will be found by other people
Peer support is vital to people living with HIV in prison to support their physical and emotional health and well-being, but cannot be implemented in isolation. Protocols need to be in place to ensure the effective healthcare of people living with HIV in prisons, equitable to the healthcare received by the general public from the NHS. This needs to encompass immediate access to anti-retrovirals and systems that fully support people to maintain treatment adherence. Specialist HIV care should be introduced into prison healthcare teams to complement the generalist teams and ensure best practice in the care provided to the person living with HIV incarcerated. When transferring people living with HIV to other prisons healthcare teams should ensure a supply of prescription drugs is provided and that prescription needs, including ARV history, arrives at the new establishment prior to, or with, the patient. People living with HIV incarcerated should be given time to prepare when attending outreach appointments and the use of the long-chain should be employed during all clinical consultations to ensure the privacy and dignity of the patient. Prison Service Orders should be updated to reflect changes in HIV care and treatment and better reflect the healthcare needs of people living with HIV incarcerated.
A directive should be put in place to ensure the effective implementation of sexual health standards including but not limited to the National guidance on commissioning sexual health and blood borne virus services in prisons across all prisons.. (BAHSH, 2011)
Protocols for confidentiality should be reviewed and updated within both Prison Service Orders and working practices at the prisons to ensure the confidentiality of people living with HIV incarcerated are protected.