Like it or not, HIV clinics are handing over
more of our
specialised care to GPs. But are they up to the job?
Words Laurence Gibson
Image Rose Barton
The
Greek philosopher Heraclitus once proffered: “There is nothing permanent
except change.” The government has seemingly embraced this concept by
gradually shifting NHS services toward a new system where care for people
living with HIV will become shared between primary care (GPs) and
hospital specialists.
End of one-stop care
Many people with HIV receive a comprehensive service from their hospital clinics,
but funding pressures on prescription budgets mean many are trying to push
more care to GP surgeries.
If this continues, it will be a far cry from the one-stop-shop service we
are used to receiving from our HIV doctor, and alarm bells are already ringing
over the loss of our all-in-one service.
You may indeed wonder if we can trust our GPs or worry that they have only
a basic knowledge of HIV.
Why is this happening?
For several years the government has manipulated NHS funding to push more
and more non-emergency care out of hospitals and into GP surgeries. This started
with the setting up of primary care trusts and has continued with the latest
GP contract which provides cash incentives to family doctors who do more chronic
care work in their surgeries. The government Public Health White Paper Choosing
Health also sets out an action plan, “to extend this to a new vision
for primary care where as much care as possible is delivered as close as possible
to patients’ homes”. It says 15 million outpatient attendances
could be “safely and effectively” offered in a community setting.
Ministers insist this is what patients (and the electorate) want but the fact
remains the change is also driven by cost. The powerful British Medical Association
supports the shift to primary care but it is also concerned about the struggle
for some to access services in primary care.
People living with HIV across the country are already being forced to attend
GP surgeries to access drugs like
antibiotics, statins and any other medicine that does not directly combat
HIV.
But many have lengthy waits to see a doctor and surgeries often employ staff
unaware of the specific needs of an HIV positive patient.
Overloaded clap clinics
That said, the idea of ‘shared care’ is not necessarily absurd,
especially if managed properly. A few GPs are fully aware of the requirements
an HIV positive person may have and are successfully integrating
primary care into the lives of their patients.
Dr Peter Baines, of Clerkenwell Medical Practice in London, is one such physician.
He greeted me outside his centre with a plethora of other cheerful staff surrounding
him, posing for a picture. They have some 75 people living with HIV on their
practice list. The entrance to Dr Baines’ clinic is bright and airy
with a striking décor, and the patients waiting within are a broad
mix of ages, races and sexes, with a few mothers-to-be occupying their children’s
attention along the hospital-like corridors.
“About one per cent of our patient list is HIV positive although there
are bound to be many more undiagnosed out there,” Dr Baines explained.“Clap
clinics are overloaded, there is no escaping that. And we are trying to make
the surgery a safe place for clients to receive GUM medicine,” he continued.
“Primary care has been managing chronic illnesses for many years, and
very successfully. HIV is now classified as a chronic illness and should be
treated as such.”
“As HIV becomes less of an acute problem, with people leading fuller
lives with normal life expectancies, clients must begin to access primary
care to deal with their general health. It should be a shared relationship.
Hospital HIV specialists should be there for when people become unwell and
we can deal with everything else.”
Stigma
experts?
Dr Baines trained at Chelsea and Westminster Hospital’s Kobler Clinic
and has worked in central London ever since. He realises the shift from primary
care be may hard to swallow if you are HIV positive
and live in a rural area. “It may be different for a patient in a little
Scottish village to accept this, but it’s up to us all to begin to overcome
certain fears.
“Patients worried about stigma or those that fear they may be judged
need to
overcome this. Primary care GPs must make the experience for patients as pleasant
as possible.” Then there is the fear of the HIV specialist doctor, who
worries what his role may become in the future, and is concerned that he may
lose his grip. For Dr Baines, shared care is the solution. “We, as GPs,
are experts at dealing with stigma. We deal with families directly, respect
confidentiality over teenage pregnancies and have had experience of managing
abortions or other sensitive issues. GPs very much coordinate health.”
Waiting room horrors
Despite Dr Baines’ confidence in his own surgery, it doesn’t take
much digging to find many horror stories of shocking treatment at the hands
of other GPs.
PN spoke to James, a 49-year-old HIV positive writer from south London, who
was asked by his hospital doctor to see his GP about low blood pressure.
“I went to my GP about a prescription for ACE inhibitors to help my
blood pressure, but had to wait a whole month to get an appointment under
the new system.
“Five days passed before I could even get an appointment under the 48-hour
scheme, and then was offered a locum doctor.
“She knew nothing about HIV, and I even had to explain to her about
my high level of cholesterol caused by antiretrovirals.
“She then referred me to another hospital where I had to wait two hours
in a dirty room, and all this for bloods which could have been taken by my
hospital doctor,” he fumed.
“I even had to wait for the prescription, bringing the total waiting
time to one month.”
Outed in the surgery
Michael, a 27-year-old musician from Hackney, experienced a lack of respect:
“I was made to feel awful in my GP surgery.
“I’ve been HIV positive for many years, but never have I experienced
such disregard for my emotions when, in front of the busy waiting room, the
receptionist shouted back to a colleague: “He is an Aids patient”.
“The whole room stared and a couple of girls giggled in the background.
I left head hung high and have never been back.”
Low expectations
So it seems social stigma does indeed exist within parts of primary care system
itself, but where does the problem lie?
In December 2001, UKC and Terrence Higgins Trust published a report based
on 430 patients’ responses to questions about GP services and sexual
health. The results showed little support for GPs providing more sexual health
services, with 60 per cent opposing the idea.
Ninety per cent felt if GPs were to take a more active role, proper training
of NHS staff was the most important concern, followed by 70 per cent worried
about confidentiality. Eighty per cent of people with HIV had experienced
prejudice or discrimination since their diagnosis, and health centres were
reportedly a common source for this discrimination.
This cannot be easy reading for those with HIV who are now forced to visit
their GPs to get prescriptions and, in the words of Dr Baines, “oversee
their health, generally.”
Dr Wassim Malas, a former trustee of Body Positive North West and Manchester
GP, is keen to overcome these fears: “If you constantly expose people
to negative imagery in the media [with regard to GP surgeries] then nothing
will ever change. Patients will not expect to get a good service, and then
simply not bother going at all,” he says.
“GPs will continue to get little knowledge of HIV if people think they
can just go to the hospital. But your GP also has the advantage of seeing
the bigger picture and can help give you the skills you need to understand
and manage your condition yourself.
“The sooner people start demanding the services from within the community,
and from GPs, the sooner we can normalise HIV.”
How
to manage the change
Martin Schwarz (pictured previous page) is co-chair of the Wharfside patients’
forum at London’s St Mary’s Hospital. He was involved in discussions
with the hospital’s clinic about changes to the formulary, the name
for all the drugs the clinic prescribes.
“One reason for the change was that HIV specialists are no longer allowed
to prescribe certain drugs that are only the preserve other specialist or
GPs like warfarin and anti-depressants,” he explains.
“We discussed the formulary and accessing GP services at our monthly
meetings. We asked patients to recommend any good, HIV-friendly GPs. A list
is now kept at the clinic. A nurse specialist also liaises with patients and
GPs to get them registered. The clinic has assured us that they would not
refuse to treat patients if there was a clinical need and the patient could
not access a GP.
“At the moment, it is luck of the draw if you manage to register with
a knowledgeable GP. What we would like is to get GPs better trained in HIV-related
care, starting with student doctors working in general practice. Training
programmes have taken place with some success in Brighton and some parts of
London, but more GPs need to be trained. “Unfortunately there are still
many homophobic and HIV-phobic doctors out there; not only in GP practices
but in hospitals and dental departments too.”
Inevitable change
Perhaps Heraclitus’ ancient philosophy of 500 BC was correct: change
may indeed be inevitable. But it remains our responsibility as people living
with HIV to fully debate the change in order to guarantee we continue to receive
the best care possible and not accept anything less.
• Next month: GPs and confidentiality
• HIV in Primary Care booklet, Medical Foundation for Aids and Sexual
Health: useful booklet for GPs with HIV positive patients on their list, www.medfash.org.uk
Patients’ rep Paul Clift
gives the thumbs-up to a scheme in Brighton designed to make GPs more HIV-friendly
Sometimes
an HIV specialist will have compelling reasons to refer us to a GP, but this
referral is meaningless unless the GP is HIV-aware and knows how the virus
affects our general health.
In Brighton they are addressing this with the HIV Education course (HIV Ed
for short) aimed at local GPs. The two-day course presented at the Lawson
HIV clinic aims to help overcome the problems faced by doctors and patients
in primary care. The course covers basic clinical awareness of HIV, illnesses
associated with it, signs of primary HIV infection, an awareness of populations
most at risk and a patients-eye view of HIV that includes a discussion with
patients about their experiences (good and bad) of using a GP. They also get
an awareness of confidentiality issues specific to HIV.My own experience suggests
this system works. I went to my HIV-aware Brighton GP with a suspected STI
and found the response sensitive, thorough and exemplary. HIV-aware means
that my HIV is taken into account when prescribing medications for other illnesses,
which is crucially important. A few years ago I was in the early stages of
shingles, but although the GP knew I had HIV, they made no allowance for this
when prescribing acyclovir. It’s the correct drug, but in people with
HIV the dose should be markedly higher; I am still living with the results
of that mistake. Doctors who have been on the HIV Ed course know how to avoid
this sort of mistake, and where to find information to help them get it right.
Better still, they acquire a confidence to treat HIV patients for non-HIV
illnesses.
Problems can still arise when a locum doctor sits in for the HIV-experienced
GP. And how can we be sure that the GP and HIV doctor are communicating properly
about a patient’s care?
Last autumn I conducted an anonymous snapshot survey to see how HIV patients
in Brighton felt about using their GP. In general, they were happy to go to
a GP surgery that has opted to become a Locally Enhanced Service with HIV
as its specialism, as they could see clear benefits. For example, one person
said: “I recently had an invitation from one of the doctors for a general
health check specific to being a patient with HIV at the surgery.” How
well does a GP at one of these practices understand HIV? One patient said:
“Most have been very good, surprising me. Even when I once saw a duty
doctor on a Sunday evening, he asked about my CD4 count and viral load and
understood the answers, which impressed me.
“I see using my GP as a sign of being healthier: I am getting to the
stage where I am well enough on the meds that I only need basic primary care
just like everyone else who does not have a serious illness. Knowing the difference
about which to use is also fudged by regular appointments at the clinic. I
will probably use my GP more (and the clinic less) when I have annual appointments
because I won’t be there every three months. I won’t be able to
ask about coughs and colds from an HIV doctor. I’ll have to treat it
like all my friends; go to the GP or just go to bed.”
If we are to use our GP more, then they are going to have to demonstrate competence
in managing patients with HIV. This can be achieved, as the Brighton experience
shows, but only if doctors are willing to become HIV-aware, and if HIV specialists
and HIV patients are willing to train them. The Brighton scheme has shown
the way forward; it is now up to other healthcare trusts to follow or be called
to account, by us.
• Paul Clift is patients’ representative for Brighton’s
Lawson HIV clinic and a trustee/director of UKC
back to
contents - Issue 120
back to top of page
