A PN reader grills an HIV-friendly GP about
whether family doctors can really be trusted to protect our confidentiality
Words Dr Peter Baines
Images C(Aitch)
Q:
My HIV doctor now refuses to prescribe me acyclovir and antidepressants and
tells me I must register with a GP to get them. I’m scared of disclosing
my status to even more people just to get these pills. Will I now have to
give my real name and tell the GP my HIV status to get the medication I need?
I’m surprised an HIV doctor would suggest a GP take over any of their
prescribing without first smoothing the way with local practices. Put the
responsibility back onto your HIV clinic and get them to recommend a GP or
practice in your locality. It helps if your clinic provides you with a letter
to hand to your GP stating the medicines
they want them to prescribe and the role they are asking the GP to take on.
Communication is essential if this shift in care is to be trouble free.
You do need a GP. Your HIV clinic can’t become a GP practice for people
with HIV. It’s in your best interests to tell your GP about your HIV
status and any medicines you take. GPs and their healthcare staff are experts
at managing long-term conditions like diabetes, kidney failure, asthma, and
chronic depression and are best placed to provide a ‘holistic’
care package. As more people are living healthy lives with HIV it’s
essential they are plugged into services for everything. We are there if you
damage the cartilage in your knee, get piles, require contraception, have
high blood pressure, get tonsillitis or require antenatal care for
a pregnancy.
Having a GP gives you access to diagnostic skills and care. Your GP will always
liaise with your specialists when necessary. Recently one of the patients
at my practice developed type 2 diabetes, believed secondary to HAART. His
HIV clinic had no facility to manage diabetes so he registered at my practice
and we all worked together to put together a full package of care.
Q: Will my GP record my HIV status in my medical notes and computer
records? I’ve heard horror stories of ‘Aids’ being written
in red ink across people’s notes.
GPs, just like clinic doctors, will make notes in your records. Most GPs now
use computerised notes and have an excellent track record in ensuring patient
notes remain confidential. Computerisation has led to even higher levels of
security.
Sadly I too have heard of horror stories about the ink-marked records, but
thankfully not for many years. If your diagnosis is recorded in a prejudicial
way, that is grounds for a complaint to the practice. HIV should appear in
your notes with the same prominence that surgery would use to record ‘asthma’
in another patient’s notes.
Q: Will surgery staff have access to my notes?
All clinical staff will have access to your records. Additional practice staff,
such as the secretary typing your letter, or the receptionist sorting out
your appointments, may be granted knowledge of any of your ongoing diagnoses.
This is just the same as in a big hospital where a much larger number of people
may have access to your notes. At our practice we make confidentiality a priority
and all staff including receptionists are trained. Confidentiality should
be just as good as at your current HIV clinic.
Q: I’m job hunting and worry potential employers will insist
on writing to my GP to ask about my health. Must GPs respond to these requests
and disclose my status?
Sadly, more and more employers ask for so-called ‘pre-employment health
checks’. Your GP (and indeed any professional) should not be expected
to lie on your behalf and risk making themselves liable. That said, no outside
agency, including relatives (except in life or death situations), can see
your notes from your GP without you first providing the GP with your signed
or verbal consent.
You can see any report written about you before it’s sent off. If you
request a change your doctor will normally add a subscript stating that information
was withheld or omitted at your request.
This puts the onus on you and does not resolve the dilemma about whether or
not to disclose your HIV status to a prospective employer. Ensuring Positive
Futures at UKC can help with this. Under the Disability Discrimination Act,
your employer is obliged to support you and make reasonable adjustments to
enable you to do your job. This sounds great on paper, but many fear they
will not get the job in the first place if they disclose their status.
Over the last year, three of my patients have declared their HIV positive
status on a pre-employment questionnaire. Then, with the person’s consent,
the potential employers have written to me for a report. As their GP I have
been able to state each was fit and well and perfectly able to carry out the
proposed job. All three were subsequently offered the posts they applied for.
Q: How can I find a GP that is HIV-friendly?
Word of mouth recommendations are best. Look for clues: perhaps the practice
leaflet or website states that one of their GPs has a special interest in
HIV. Some practices provide GUM and HIV services (shared care) in agreement
with their local primary care trust. Does the waiting room have a good feel?
We give out the message by leaving copies of PN in the waiting room. If the
only poster in the waiting room is the ‘Aids iceberg’, it’s
likely they aren’t very up to date.
Try out a practice before disclosing your status. If you’re sitting
in the waiting room and quickly become aware of the medical diagnoses of the
person in front of you, it’s not the practice for you or anyone.
Most practices only register patients living in their local area. For this
reason you may be unable to register exactly where you want. For HIV this
is particularly unacceptable and I’d suggest if any practice isn’t
HIV-friendly don’t register or disclose your status; go back and tell
your clinic. They will then need to contact your local primary care trust
that is responsible for providing services to you. The Department of Health
has recently consulted on whether people would prefer to be able to register
at a GP practice anywhere, regardless of address, so watch this space. If
you’re worried, you could delay declaring your status until you are
comfortable that disclosure is safe for you in that environment. You may be
worried about a neighbour bumping into you at the GP surgery, but remember,
you could be there for any reason. This is unlike when you attend a designated
HIV clinic which is often in a separate building and every receptionist (who
may equally be your mum’s best friend) knows exactly why you’re
there.
Q: Is it true GPs are now managing patients who have HIV? I’ve
heard the term ‘shared care’ used. What does this mean?
All GPs should already be providing their usual ‘general’ services
to anyone who has HIV. Obviously many conditions may be linked to you having
the virus. You may visit your GP with a problem that requires specialist HIV
knowledge, then your GP will seek advice from your hospital consultant.
Shared care in HIV is a different level of service provision above and beyond
what you would expect from your GP practice. Any GP surgery offering this
service has to be approved by their local primary care trust prior to being
granted a contract to offer this enhanced service.
These practices can have a ‘shared care’ arrangement with your
hospital to offer you some services at the practice. It means patients are
better understood by their GP and can receive services locally. The extent
of this care depends on how things evolve, but at the very least will involve
routine checks and monitoring rather than
alterations in a person’s HAART regime which remains under the supervision
of your HIV clinic.
My practice has offered this service for the past year and it’s been
well received. Last week I was delighted when one of my patients asked if
it was possible to receive all his HIV care at the practice because it meant
seeing familiar faces, better access and no more worries about being spotted
attending the HIV clinic by a neighbour. Unfortunately I had to disappoint
him that we haven’t reached that stage yet but it shows just how far
things have moved on from the early days.
• Peter Baines is a GP at the Clerkenwell Practice, London, which has
special approval to provide shared care to people living with HIV. This surgery
is within the Islington Primary Care Trust area
• Contact your local primary care trust to find out if practices in
your area are part of a ‘shared care’ scheme. Check out www.nhs.uk/England/AuthoritiesTrusts/Pct/Default.aspx
for more details
• For further information on disclosure in the workplace, contact the
Ensuring Positive Futures team on 020 7564 2188
