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
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.