2. Person-centred care

Well-being in the context of these Standards is a consideration of the broader quality of life issues for people living with HIV beyond treatment of the virus and beyond physical health and increased longevity. While there are clear intersections between well-being and mental health, the emphasis here is on the more holistic sense of self-worth and happiness that contributes to quality of life for individuals and communities. The aim of quality health and social care is to create lives that are worth living. While this includes many factors that are beyond the remit of these Standards, there are key contributions that service providers have and can continue to make to the well-being of individuals and communities of people living with HIV more generally.

Improving and maintaining well-being for people living with HIV clearly brings individual benefits, including greater happiness, social participation, self-worth, improved physical health, greater resilience in the face of adverse events, and more opportunities to contribute to society.

The broader community benefits of increased well-being include the greater participation of people living with HIV in society, reductions in community stigma, lower community viral load and consequent onward infection. The highly visible HIV partnership approach and emphasis on holistic well-being has provided a key model for other areas of the health service.

While the benefits of improving and maintaining well-being may be self-evident, the practices, policies and actions that enhance well-being are often overlooked or undervalued in service provision and assessment. These practices can include: the consideration of social and psychological contexts in the provision of care; the establishment and maintenance of strong professional networks that facilitate continuity of care and efficient referral; productive engagement with community sector organisations to ensure continuing relevance; and public advocacy in partnership with communities to ensure continued best-practice service provision. These are all things that have characterised the HIV service sector historically and contribute directly to the well-being of people living with HIV and their communities.

The increased emphasis of person-centred care is particularly useful in promoting models of well-being that are appropriate to people’s life circumstances and values. The NHS person-centred skills and education framework provides a useful tool for services to undertake self-assessment in this area.

Agencies providing HIV care have a responsibility to ensure that well-being is an issue that is considered in the design, review and provision of services and there are opportunities for referral and support that enhance well-being. Attention to and responding to issues such as homelessness, immigration experience, access to education, intimate partner and genderbased violence, drug and alcohol use, stigma and social exclusion within the remit of the service will assist in optimising life outcomes for people living with HIV.

Feedback and input should be sought from people living with HIV and the community sector on the contribution of services to the well-being of people living with HIV and their communities. It is critical that this feedback, particularly the positive aspects of it, reach service providers.

Services should ensure that:

• Issues of well-being continue to be incorporated into clinical and care practices in transparent ways

• A person-centred approach is taken in providing care to ensure that well-being for each person is holistic and meaningful

• Well-being is a consideration when developing, delivering and assessing services and policies in health and social care for people living with HIV

• Pressure on the cost and time available to provide clinical services does not result in the erosion of well-being initiatives or considerations

• Best practice service provision that incorporates concerns of individual and community well-being should be broadly communicated

Within HIV care:

• Documented evidence of a local guideline for assessment for and access to support around accessing benefits and financial hardship.

• Proportion of people in whom patient-reported outcome measure (PROM) is used to identify symptoms, concerns, priorities and outcomes of care (target: 90% of those with capacity to participate) (BHIVA PROMs in development at time of publication).

• Documented evidence of the use of patient-reported experience measure (PREM) to assess patient experience in past 3 years (target: 95% of services) (BHIVA PREMs in development at time of publication).

References: 44, 54–61