Written evidence from National AIDS Trust (HCS0039)

Dr Cheryl Gowar, Senior Policy and Research Manager at National AIDS Trust

1.1         National AIDS Trust (NAT) is the UK’s HIV rights charity. We work to stop HIV from standing in the way of health, dignity and equality, and to end new HIV transmissions. Our expertise, research and advocacy secure lasting change to the lives of people living with and at risk of HIV.

1.2         Given our remit, our response here is limited to the rights of people living with or at risk of HIV in residential and domiciliary care settings.

Social care need among people living with HIV

1.3         With advances in medication, people with HIV are living much longer lives. By 2028, more than half the people living with HIV in the UK will be over 50 years old (the cut off for ‘older people’ living with HIV is usually taken as 50 because the impact of HIV and its treatment tends to shift the ageing process forwards). The majority of older people living with HIV also have at least one additional long term health condition, which presents additional challenges. This changing profile of the cohort with HIV, to an older population with multimorbidity, means that there is an emerging demand for social care with appropriate provision becoming an increasingly pressing issue.

1.4         However, HIV, its treatment, and accompanying stigma can also result in the need for social care support among working-aged people living with HIV. For example, neurocognitive problems, specific nutritional requirements, higher risk of psychological problems, or chaotic lifestyles often driven by HIV-related stigma and discrimination, are all potential outcomes of living with HIV that can lead to a requirement for social care support.

1.5         People living with HIV who need social care report to NAT that the phasing out of HIV specific social workers and the reduction in specialist HIV support services over the last five years or so has increased their demand for formal, generic social care services where previously specialist community-based support may have been accessible within the community. The shift to more generic provision raises questions about the appropriateness of provision.

1.6         Earlier this year, NAT published reports based on interviews with older people living with HIV, focused on long term condition management needs and appropriate responses to them.[1] Common themes among the interviews were concerns about HIV-related stigma, confidentiality, and the lack of understanding of HIV-related needs (nutrition, medication and polypharmacy etc.)

Stigma

1.7         People living with HIV remain highly stigmatised and, in response to stigma or the fear of stigma, often coping mechanisms will include maintaining privacy and limiting the sharing of personal information to a small network. People living with HIV fear losing their autonomy in care settings and being even more vulnerable than usual to everyday societal stigmas.

1.8         Evidence suggests they have good reason to be concerned. In a report published in 2015, a care home resident told NAT: “I know because of my HIV status they were reluctant to help me with the shower. I would keep asking but they would just leave me, I kept reminding them but they were really reluctant."[2] Other people reported being given separate cutlery to use. These routine stigmas have a profound impact on the experience of care for people living with HIV. They constitute degrading treatment and, as such, are a breach of Article 3 of the Human Rights Act 1988.

1.9         Recently, NAT was contacted by a person living with HIV who, on the day they were due to move into a care home, had been told that they were no longer able to do so. They were told that it was against the care home’s charter to accept people living with HIV. This contravenes equality legislation and will be contested, with support from NAT.  

1.10     Although not directly related to the rights of people using social care, in 2019 NAT reported on the widespread rejection of people living with HIV from the social care workforce by care agencies.[3] Again this contravenes equality legislation and, further, it gives an indication of the poor understanding of HIV in the care sector. The EHRC has taken this issue up with persistent offenders.

Confidentiality

1.11     It is imperative that the confidentiality of personal and health records is preserved for all people in care settings. These rights are enshrined in common law, the Data Protection Act, and Article 8 of the Human Rights Act, as well as GMC and NHS guidance. Confidentiality is especially important for people living with HIV, given how breaches can lead to unpleasant gossip, negative and discriminatory comments and information being shared without the consent of the person living with HIV.

1.12     There is often misunderstanding about when it is appropriate to share information about a person’s HIV status. Care staff who are not directly involved in meeting the medical care needs of someone living with HIV do not need to know their status. Some people think that they have a right to know the HIV status of people they are caring for, because of a perceived transmission risk. It is important that care staff understand there is no transmission risk when universal precautions are followed [4] and sharing a person’s health related information unnecessarily is a breach of confidentiality.

1.13     Despite legal protections, breaches of confidentiality occur in care settings. An HIV social worker told NAT “All the staff at the [care] home were informed of my client’s HIV status, although this was completely unnecessary. When his neighbours came to visit, the care assistant advised them not to let their child see him because he had HIV."

1.14     A care home resident told us "They broke my confidentiality, telling the other residents that they shouldn’t come and see me in my room because I had HIV. I was lucky because my social worker helped me move to a new home where things are much better. They respect my confidentiality here."

1.15     There may be circumstances when a care provider will need to share someone’s confidential information with a colleague who is, or is about to, provide them with direct clinical care to make sure they get the best possible treatment. However only information which is relevant in that instance should be shared and only if the person living with HIV consents (either explicitly or through implied consent).

Appropriate treatment and care

1.16     Article 2 of the Human Rights Act, the right to life, provides people living with HIV protection from poor treatment and care from care workers.

1.17     People living with HIV usually take prescribed medication (antiretrovirals, or ART). This must be taken exactly according to the prescribed regimen to remain effective and to avoid drug resistance. Even missing one or two doses per month can have an impact on treatment effectiveness. People living with HIV, especially those with conditions such as HIV-related dementia, may need support in taking their medication. One care home resident told NAT: “at first they used to remind me at the right time to take my medication but then they stopped reminding me which made it much more difficult and I ended up in hospital”.

1.18     People living with HIV have a greater propensity to poor mental health, which means that appropriate care for people living with HIV must also include attention to their psychological wellbeing. Access to peer support can be a vital for reducing loneliness and responding to poor mental health. It is important that access to peer support and other mental health services is facilitated, especially in residential care settings where previously enjoyed access to support in the community may no longer be maintained.

1.19     Given factors such as the uneven geographical distribution of people living with HIV in the UK, it is possible that some care settings may not be used to responding to the specific needs of people living with HIV, including their equality and human rights needs. It is vital that appropriate staff training is provided to avoid confidentiality breaches and the casual everyday societal stigma attached to HIV – which is already generally unacceptable – being transferred into residential and domiciliary care settings where people are especially vulnerable. Further, appropriate treatment and care must be delivered to allow people living with HIV in care settings to enjoy the right to life.

1.20     National AIDS Trust has produced a guide for care providers with attached training resources, which can help in securing proper protection of rights for people living with HIV in care settings.[5]

National AIDS Trust

02/11/2021