5

Key Findings and Recommendations

2.

This review set out to ascertain the peer support needs of people living with HIV incarcerated in UK

prisons. Positively UK’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 HIV’s care.

Despite successive Governments’ 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ago and as a result are out of date, particularly in areas such as HIV medications.

6

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 people’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.

2BASHH, National guidance on commissioning sexual health and blood borne virus services in prisons 2011

13

Findings from Interviews with

prisoners, healthcare

staff and NGOs

(ex)5.

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

22

.

8. Recommendations

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.