Key findings in the report are:
- The Department of Health should, as part of its review of the NHS Outcomes Framework, ensure that any additional indicators for ‘Domain 2’ (Enhancing quality of life for people with long term conditions) recognise the need to deliver improvements specifically in HIV care.
- All HIV specialist clinics should implement a nationally agreed set of HIV-specific patient experience measures, building on the ‘Positive Voices’ work by Public Health England.
- NHS England’s Insights and Feedback team should consider the opportunity of general surveys of patient experience and outcomes being fully harnessed to collect information about HIV care (for example the national GP survey could capture anonymous information about HIV status and experiences of care).
- NHS England should work closely with people living with HIV to develop the use of patient reporting tools – PREMs and PROMs – in HIV and ensure that any monies earned through rewards for delivering high quality care are fed back to the services that delivered them.
- The HIV community should build a consensus regarding data ownership and on how data can be shared effectively, in order to drive improvements in care across providers whilst ensuring that patient confidentiality and protection is maintained.
- NHS England should work with the HIV community to ensure that information is shared, effective mechanisms for patient involvement are in place and improvements in health and social care are informed and driven by people living with HIV.
- Public Health England should, through annual HIV reporting ensure that data is provided to Health and Wellbeing Boards, Directors of Public Health and NHS England to enable effective commissioning. The data provided should contain both prevalence data and measures of patient experience, aggregated at national and local levels.
- NHS England should ensure that HIV testing of people from vulnerable populations is offered as a mandatory feature of testing for sexually transmitted infections. This must be reflected in NHS contracts, for example, the QOF of the GMS contract.
- NHS England should ensure people who are newly diagnosed with HIV receive the appropriate information about treatment, care and peer support at the point of confirmed HIV diagnosis.
- NHS England’s Clinical Reference Group for HIV should include measures of patient experience in the HIV Quality Dashboard to provide a complete picture of whether HIV services are responding to the needs of patients.
- NHS England should strengthen incentives through the use of CQUIN payments and the QOF to measure and improve patient experience and strengthen communication between HIV clinics, other specialist providers and GPs.
- NHS England should ensure GP practices in areas of high HIV prevalence have sufficient knowledge to treat and care for people living with HIV in a way that meets their needs as identified through PROMs.
- The HIV community should in partnership with GPs, develop proposals for integrating primary care and HIV services that would improve the care of people living with HIV.
Planning effective care for people living with HIV requires several factors to be considered. People living with HIV are often from vulnerable groups that have experienced discrimination, including gay men and migrant communities. HIV is still met with stigma in society and within healthcare settings, negatively impacting upon people’s experience of care and acting as a barrier to accessing the care required. HIV testing, treatment and care are now managed by multiple agencies across NHS England, Clinical Commissioning Groups and local authorities.
To tackle these issues we held two events: a workshop with people living with HIV from across England; and a roundtable with representatives from patient groups, NHS England, Public Health England, HIV specialist care providers and local authorities. Through this we identified six areas for improvement:
- Access to HIV testing and diagnosis to reduce late diagnosis and improve health outcomes for people living with HIV
- Patient involvement in decision-making allowing people to make the right decisions for their care, particularly in managing multiple long-term conditions
- Effective medicines management through co-ordination across specialist and primary care services
- Access to support from peers in how to manage an HIV diagnosis
- Care for comorbidities and integration of HIV with other special ist areas such as mental health
- Provision of high quality care homes and appropriate end of life care for the ageing HIV population
It is essential that people living with HIV have access to and receive good health and social care, have good experiences of care and achieve optimum health outcomes. Currently data focuses primarily upon clinical outcomes of care. In order to assess and improve the patient experience we need to introduce new mechanisms for assessing the quality of care and the outcomes achieved from a patient perspective. These should be centred upon:
- Co-ordination of care between HIV specialists, primary care and other specialist disciplines
- Participation of people living with HIV in their own care
- Mechanisms to assess quality of care in terms of both experience and outcomes
- Measures to identify and tackle HIV related stigma within healthcare settings
Set out in this report is a summary of recommendations to achieve this. Data gathering and analysis can be costly and time consuming, and we have wherever possible sought to build upon established systems such as the General Medical Services (GMS) contract, and ongoing and important work in development such as the ‘Positive Voices’ survey and the development of Patient Reported Experience Measures (PREMs).
You can view and save the report as a pdf here.