UK clinicians define minimum standards of HIV care – for a changing NHS

The British HIV Association (BHIVA) yesterday published a document which outlines the standard of care that people with HIV should expect to receive – whoever is providing it.

Professor Jane Anderson, chair of BHIVA, said at a launch event in London that preparation of the Standards of Care was motivated by concern over the provision of care in a rapidly changing NHS. With different organisations providing services, and different commissioners paying for them, there is a risk of there being differences in the quality of care that is provided across the country, she said.

The document is intended to provide a reference point against which to benchmark the quality of HIV care. It outlines twelve quality standards “which are specific, concise statements about the care that any adult living with HIV in the UK should expect to receive”.

The standards are intended to apply in all four UK countries, although the scenario of NHS reforms is specific to England.

The standards cover everything from initial diagnosis to inpatient care; take in sexual, reproductive and psychological health care issues; and pay attention to the way in which care is delivered – by competent staff and with the full involvement of patients.

The document is produced in partnership with 15 other bodies, including the Royal College of General Practitioners, the Royal College of Nursing, the Local Government Association, the Faculty of Public Health, the HIV Pharmacy Association and the British Association for Sexual Health and HIV.

Also speaking at the launch event at the Royal College of Physicians, Dr Valerie Delpech of the Health Protection Agency reminded the audience that, at present, the outcomes of HIV clinical care in the UK are among the best in the world. Last year, 97% of people newly diagnosed with HIV were linked to care within three months, 86% were retained in care one year later, 88% of people with a CD4 cell count below 350 cells/mm³ were taking combination therapy and 87% of patients had an undetectable viral load a year after starting treatment.

“We have a unique situation and we need to keep the NHS working as it does,” Dr Delpech said. The standards document would be important in maintaining these outcomes, she suggested.

For example, the document makes a number of recommendations about access to care after diagnosis; measures to help people stay in care; safe antiretroviral prescribing and outpatient care.

But the area in which the UK performs poorly is prompt diagnosis (24% of people living with HIV are unaware of their infection and 47% are diagnosed late). The standards’ authors took the view that a health system which misses opportunities to diagnose an individual’s HIV infection is failing a person who is living with HIV, and so the document includes recommendations on testing and diagnosis. 

Dr Delpech also pointed out that 77% of people living with diagnosed HIV are aged over 35 (22% over the age of 50) and so are a group with an increasing number of co-morbidities, including neurological, heart, liver and renal disease. Some of these are complex or relatively rare, requiring specialist care. The standards document envisages that such care cannot be delivered by all HIV clinical services.

Clinical networks, which allow doctors at local clinics to draw on the expertise of colleagues at regional specialist services and to refer patients to services that have more capacity for complex cases, are key to the vision of the standards document.

Dr Steve Welch, chair of the Children’s HIV Association (CHIVA, which has also just published a standards document for children’s and young people’s services) pointed out that strong networks already exist for paediatric services. With a smaller cohort of 1200 children living with HIV, frequently living away from the major cities, networks have been essential to the equitable provision of high quality care in all parts of the country.

Chris Sandford, a patient representative at the Mortimer Market Centre in London said that the standards “are to be applauded because they respect patients as people.” The document takes a holistic approach to patient care, he said.

Psychosocial and peer support is emphasised, especially in the standards on retention in care, self-management, participation in care decisions, sexual health, reproductive health and psychological care.

Clinical care cannot be delivered in isolation, Sandford said. The top three concerns that patients discussed with him are social isolation, fears around disclosure and fears of discrimination.

Moreover he mentioned individuals he had recently worked with, for whom psychosocial support was essential – the patient who thought that treatment would work for a maximum of five years and that she would die soon after; the person who had not kissed anyone for three years; the client who was arrested for “spreading AIDS”.

Jane Anderson said that the involvement of patient representatives and community groups in the preparation of the standards had been vital. For example, following consultation, the section on sexual health shifted its emphasis from the avoidance of disease to the promotion of good sexual health.

Moreover, the importance of confidentiality was re-emphasised. Whereas the draft document had recommended that HIV clinics start adding each patient’s NHS number (a unique identifier used in almost all NHS services except sexual health clinics) to their clinic records, this was dropped. Some community advocates had expressed concern about potential confidentiality implications - in particular it was felt that patients lacked clear information about how the NHS number is used and what the consequences of its use would be.

Speaking during a panel discussion, Ruth Lowbury of the Medical Foundation for HIV and Sexual Health commented that while most HIV specialists could be expected to follow the standards, the challenge would be how to ensure implementation by non-specialists working in general medical services, psychological support, social care and local authorities.

Yusef Azad of the National AIDS Trust noted that in the light of the government’s localism agenda and in the context of the changing NHS, key decisions are being made away from Whitehall. Advocates need to persuade multiple policy makers to ensure that standards such as these are implemented.

Indeed, while the junior health minister Anna Soubry spoke to the meeting and said that she thought the Standards of Care would be “important in sustaining high quality care for all people living with HIV” she did not make any government commitments concerning implementation or hint at any changes in policy.

British HIV Association, Standards of care for people living with HIV 2013

The standards were also reviewed in the Autumn 2012 issue of HIV Treatment Update.