Standards for psychological support for adults living with HIV

Liz Shaw
(Consultant clinical psychologist, chair standards working party)
Ruth Lowbury
(MedFASH Chief Executive, manager of the standards development project)

Copies can be downloaded from: http://www.medfash.org.uk/publications/documents/standards_for_psychological_support_for_adults_living_with_HIV.pdf.

Published in November by the British Psychological Society (BPS), the British HIV Association (BHIVA), and the Medical Foundation for AIDS & Sexual Health (MedFASH), the standards for psychological support for adults living with HIV are the first of their kind in the UK. They aim to help ensure access to consistent and high quality psychological support across the country for all adults who live with HIV.

The level of support that should be provided for people living with HIV varies according to their needs. The new standards describe the psychological support that should be provided at different levels of complexity by a wide range of professional groups, peers and informal providers, in clinical settings and in the community.

The journey in developing the standards began In December 2009 when the National AIDS Trust, an HIV charity that aims to influence policy on HIV care, undertook a project looking into the issues associated with psychological support provision in HIV services in the UK. This was in response to a number of HIV care providers reporting cuts to their services and also because there is considerable psychological need amongst people living with HIV that is being met inconsistently and at times inadequately.

NAT held three HIV positive focus groups in partnership with other HIV charities - Positively UK, George House Trust and Gay men fighting AIDS - in order to find out about service users’ needs and experience of psychological support services. The findings informed the planning of a seminar for experts in February 2010.

The seminar posed the question: “What psychological support should people living with HIV receive from locally commissioned health and social care services?”. Sixty people attended, including clinical psychologists from the BPS such as Dr Barbara Hedge, the then Chair of the Faculty for HIV and Sexual Health, who presented on provision of psychological support for people living with HIV, and Professor Lorraine Sherr who presented scientific studies on the prevalence and range of psychological problems for HIV positive individuals.

Other presentations came from patient representative Chris Sandford, Jo Robinson and Selina Corkery from NAM, Flick Thorley a clinical nurse specialist in HIV and Mental Health and Dr Mike Youle, Director of Clinical Research at the Royal Free Hospital. The presentations led to discussions and recommendations collated in a report that came out in July 2010. It can be downloaded from: http://www.nat.org.uk/Our-thinking/Every-day-issues/Treatment-care-and-support.aspx.

The 16 recommendations included:
1. That relevant professional bodies in particular the BPS and British HIV Association (BHIVA), should collaborate to draft and publish standards on psychological support services for people living with HIV involving broader stakeholders.
2. That services should be commissioned on the basis of these standards and should include clarity on how needs are assessed, and outcomes measured
3. That relevant professional bodies such as BHIVA and MedFASH should include or improve the relevant content on psychological support when updating existing standards for HIV clinical care and management.
4. That BHIVA and BPS should advocate for more UK research into psychological need amongst people living with HIV and what interventions prove effective in meeting this need.
5. That the BPS and BHIVA should develop tools, or disseminate pre-existing tools, for healthcare professionals in HIV clinics to assist them in assessing whether an HIV patient is in need of some form of psychological support.
6. Increased levels of psychological assessment and treatment should be available for patients at certain points, for example, when starting treatment, or when going through the immigration system.

In response to this the BPS, BHIVA and MedFASH have led in developing standards of psychological support, defined as: “any form of support which is aimed at helping people living with HIV to enhance their mental health and their cognitive, emotional and behavioural wellbeing”. This therefore covers a range of services that provide such support, such as: counselling, clinical psychology services and community or peer support services in the UK.

The development of the standards was undertaken in partnership through a working party representing other key stakeholders such as GPs, Psychiatrists, Counsellors, Health Advisers, and commissioners, as well as voluntary sector provider organisations and people living with HIV.. This group produced a stepped care model for assessing and responding to varying levels of need for psychological support and a set of standards that will be helpful to commissioners and managers of HIV services in planning psychological support for people living with HIV.

The standards have been endorsed by the leading relevant professional bodies and should hold sway with providers and planners of HIV services as a result. They cover eight areas with attached auditable indicators to help measure whether they are being met:

• The promotion of mental health and psychological wellbeing
• Comprehensive psychological support services
• Engagement of people living with HIV
• Support at the time of diagnosis
• Identifying psychological support needs
• Competence to provide psychological support
• Coordination of psychological support

Evidence based practice

It is worthwhile users of services becoming familiar with these standards as they represent the psychological support that all users of HIV services should expect to receive. This is important because psychological difficulties have often been underestimated by healthcare practitioners, and it is possible that many people living with HIV have not been offered access to the services they need.

People living with HIV experience higher than average levels of emotional distress, such as double the rates of depression. This can affect a their quality of life, adherence to medication, disease progression, and how they cope with having HIV. Psychological support can improve these outcomes, as well as helping reduce the risk of HIV transmission, with the added benefit of saving costs to the NHS.

Copies can be downloaded from: http://www.medfash.org.uk/publications/documents/standards_for_psychological_support_for_adults_living_with_HIV.pdf.