We all know
that the British response to HIV has been left to slide in recent years.
Although we have some of the best standards of treatment and care in the world,
our record on prevention is unimpressive, to say the least. Indeed, the previous
government largely ignored the issue.
Today,
politicians – including government ministers – are realising the extent of the
mistake.
At the end of
2010, the House of Lords established a Select Committee to investigate the
state of the HIV response in the United Kingdom. It was set up at
the urging of Lord Fowler, responsible for the ‘tombstone’ HIV prevention
campaign of the 1980s, but also for the enlightened and pragmatic way a
Conservative government set about dealing with thorny issues such as needle
exchanges and talking about sex in public.
Time-limited
parliamentary committees like this one don’t scrutinise proposed legislation.
Instead, they scrutinise areas of concern and make recommendations to
government.
Recommendations
from a committee led by a high-profile peer will create attention and
influence, especially when getting value for money on health is at the centre
of national politics. While some committee reports sink without trace, this one
is likely to coincide with intense restructuring in the HIV sector, and in the
way that HIV treatment and prevention are organised and funded.
I was invited
to give evidence to this Select Committee on how the NHS can best commission
and deliver HIV treatment.
Although
parliamentary Select Committees often look like the Spanish Inquisition, this
Committee was less interested in scoring points and more interested in hearing
from a wide range of experts. In particular, the Committee wanted to know where
treatment could be delivered most effectively.
At the time
of the hearing, it had just been announced that HIV care would stay with a
strategic commissioning body, rather than being devolved to individual GP
consortia like most other conditions. A national body will have an overview of
how HIV care will be delivered in the UK, at least in the short to medium
term.
However,
there was interest in the extent to which HIV care could be delivered through
general practitioners. I felt it was particularly important to get across two
points.
The first was
that the needs of people with HIV in the UK continue to be complex; it would
be a mistake to assume that everyone will eventually be cared for through GPs.
Although care
delivery needs to be redesigned as HIV treatment evolves, ripping up the
current system of commissioning and delivering health care without recognising
its strengths would be a disaster.
Management of
patients with uncomplicated HIV infection may in the longer term be suitable
for devolution from hospitals to general practice or to polyclinic-type
centres, where district clinical nurse specialists can deliver HIV clinics.
Innovations in monitoring technologies and information technology, coupled with
greater durability of HIV treatment, mean that most people who start HIV
treatment without any symptoms might rarely have to attend a hospital for care
after initial work-up.
Secondly, new
technologies allowing self-monitoring of a condition, and delivery of drugs to
home or work, will reduce patients’ future need for interaction with general
practice. With good patient information and a supportive healthcare system,
many people with HIV will be able to take greater responsibility for
self-management of their condition.
However, it
is overly simplistic to assume that most patients with HIV will eventually be
managed through general practice, with high levels of self-care. A recent study
projects that, in 2013, 50% of people with HIV receiving care in the UK
(39,000 people) will be classified as symptomatic or AIDS-diagnosed.1
This refers to the stage when someone was diagnosed and indicates their
subsequent use of hospital services. There is extensive evidence that late
diagnosis with symptomatic disease is strongly associated with a higher risk of
developing co-morbidities such as cancers, osteoporosis, cognitive impairment
and kidney disease.
There will be
a need for continued strong linkages between local HIV care and expertise at
centres of excellence, with a strong case for concentrating specialist care at
a smaller number of major centres. There will be a growing need for
collaborative working between HIV services and other specialisms such as
cardiovascular medicine, oncology, hepatology and geriatric medicine as the
HIV-positive population ages.
Effective
commissioning must recognise that the long-term needs of the HIV-positive
population will remain complex, possibly for most, requiring care networks
within a national or regional framework.
GP
commissioning would undermine the evolution of HIV services towards a network
model, isolating aspects of care and setting up contractual barriers to
collaboration between those with the greatest expertise in managing complex
cases – those cases with the greatest potential to incur costs to the NHS.
Research shows the average inpatient days for patients with AIDS rose from 7.7
per annum in 1997 to 10.9 in 2006, despite a decline in new AIDS diagnoses,2
indicating the growing complexity of care and ageing of the HIV-positive
population.
The
Government’s White Paper Equity and excellence: Liberating the NHS has
undertaken to put information for patients at the heart of the NHS. The
management of increasingly complex conditions requires a continued focus on
high-quality patient information to help patients navigate healthcare systems
and engage in effective self-care.