They are surrounded by people who understand chronic diseases, so why are
HIV positive healthcare workers so terrified of disclosing at work, asks Marcel
Wiel
The next time you attend hospital, spare a thought for the nurses, doctors
and other staff working there. Chances are at least one, or maybe more, is
HIV positive and fears disclosing their status. Many NHS staff living with
HIV are especially concerned that their career prospects will be thwarted
if colleagues and managers find out.
Hidden army of positive nurses
With 1.3m staff in England alone, the NHS is not only the fifth biggest employer
in the world but also an active recruiter in high-prevalence nations. Statistically
there must be many hundreds, if not thousands, of HIV positive health workers
in the UK. Crude estimates suggest around 700 HIV nurses living with HIV are
recruited from sub-Saharan African and the developing world each year. That
does not include those HIV positive people recruited from within the UK.Some
have UK residency concerns and some fear disclosing their status (or sexuality)
to family/friends. Most live in terror of uninformed and hostile media coverage
if their status ever became public. And with good reason: in 2001 the tabloids
became apoplectic when it emerged Wolverhampton health authority had recruited
10 HIV positive nurses to a nursing and midwifery training course to fill
vacancies, even though none were engaged in high risk procedures.
Physician, heal thyself!
As for doctors, no one has any idea how many are
living with HIV in the UK. The medical profession is notoriously bad at supporting
doctors who fall ill or have long-term medical conditions. Dr Alice Welbourn,
chair of the International Community of Women with HIV/Aids (ICW) knows several
HIV positive nurses who have had bad experiences. She says doctors and nurses
who get ill can be ostracized by colleagues. “It’s a form of double
stigma. They view it as ‘going over to the other side’ by becoming
an Aids patient.” Doctors also don’t like taking time off sick
because this means a colleague must cover their clinics. Medicine is an extremely
competitive profession that attracts highly driven, career-minded individuals.
Illness is regarded as a flaw or weakness. Dutch HIV activist Raoul Fransen,
(PN 105, September 2004) recalled the appalling way he was treated in medical
school when he disclosed. Things got so bad he decided to take his considerable
talents into public health instead. A recent US study of HIV positive physicians
found a non-disclosure work environment led to drug and alcohol abuse, problems
sticking to safer sex, poor adherence, inability to disclose to parents, ‘over-identification’
with patients and burn out. A tiny minority attempted suicide. Most feared
becoming ‘stuck’ in a particular job.
Confidentiality fears
Richard Peters*, 29, is an HIV positive medical doctor who works in HIV research.
So far he’s only disclosed to his closest co-workers because he fears
being perceived as being ‘too emotionally involved’ with the wider
group of people he deals with in his work. Managing his HIV care, he says,
has been easy, though he thinks fitting in his medical appointments around
work on a ward would be difficult.
Disclosure can be easier if you’re higher up the career ladder. Peter
Arlidge*, a 45-year-old consultant physician, feels it hasn’t affected
his career mainly because there is shortage of skills in his specialist field.
A senior manager did once breach his confidentiality but this had no serious
ramifications. And going part-time wasn’t hard to arrange. He was surprised,
however, on pursuing the breach, to find his employer, a regional centre of
excellence for HIV, had no workplace policy for its own positive staff. He
dropped the matter, but remains convinced that if disclosure is handled badly;
there’s more risk, hence the need for good workplace policies that everyone
trusts. Arlidge says: “It’s so ironic this doesn’t happen
where care for HIV is provided, not to mention hep B, hep C and TB,”
adding his biggest fear remains that disclosure will adversely affect his
ability to work.
A
good response
Christopher Collister, 29, (above right) an HIV clinical nurse specialist
on the Jefferiss Wing at St Mary’s Hospital, hasn’t encountered
problems. Before disclosing he was shocked to hear some colleagues say they
wouldn’t want a relationship with an HIV positive person because ‘they’d
have too much baggage’. He eventually disclosed, but only once he’d
become more senior. Looking back, he thinks he might have overplayed in his
mind the stigma he expected to encounter. On a personal level, he sometimes
feels he has “too much
information” and would like to say to his personal doctor:
“I don’t know what to do. You tell me what to do.” Even
when disclosure is well managed, it doesn’t mean you can expect things
to go smoothly elsewhere in the NHS. Paul Weston, 44, a rehabilitation assistant
at Hackney’s Mildmay Mission Hospital, had a positive experience of
disclosing at work: “Everyone was sympathetic. It even helped me be
more open in my private life.” But as an inpatient at UCH his confidentiality
was breached when nurses discussed his status in an open ward for all to hear.
“I would have taken things further but I was too sick and couldn’t
be bothered,” he says.
Victimisation
Some aren’t so lucky as Christopher and Paul. As a community nurse,
Jennifer Cowan*, 41, from South Africa, works much more on the NHS frontline.
In 2003, she tested positive for HIV and TB. Quite ill, she took eight months
off sick. Her occupational health (OH) team and consultant understood her
contact with clients carried no risk and encouraged her to return to work.
Things started to go wrong when a fellow nurse breached her confidentiality
by disclosing her status to her line manager. When she returned part-time,
her caseload was triple that of a colleague working similar days. Since then,
she’s found it hard to get time off to even pick up her meds. It’s
even been suggested that she find work elsewhere. She thinks a campaign is
underway to tarnish her work record making it impossible for her to find another
position. She’s decided to make a complaint but is reluctant to seek
support because she’s now fearful of speaking to anyone about her grievances.
Getting back in
For Gerald Northwick*, a 41-year-old GP, it’s returning to work that’s
the problem. A period off sick has led to his needing to take refresher courses,
but, one year on, he has yet to secure funding. Meanwhile, he feels he’s
deskilling fast. ‘It’s madness. I’m the ideal person to
specialise in chronic conditions, but the system doesn’t value my experience.
It’s such a waste.” His big fear is breach of confidentiality,
especially when
disclosure is badly handled by an ill-informed manager rather than a dedicated
OH. “People talk, and ignorance and prejudice are rife. My career as
a GP would be over if my status was known. No practice would have me as a
partner and no patient would register with me.”
A sign of trust
Professional bodies have shown some support. In 2002, Dr Beverly Malone, general
secretary of the Royal College of Nursing, said it was important NHS employers
ensured “a culture of trust” so “staff felt able to disclose
health issues in confidence and seek appropriate support and advice from their
managers and OH service.” Meanwhile the British Medical Association
equal opportunities policy explicitly covers members (and prospective members)
living with a disability or a chronic illness.
Sometimes though, disclosure is handled well. But even here, the general circumstances
of the person concerned play a crucial role. Dean Butler, 35, is an Australian
HIV community specialist nurse working in Brighton. “I’ve always
wanted to work in the sector and am quite assertive and knowledgeable about
HIV,” he says. When he started work in Brighton and wanted to use his
local HIV care, he became worried it would be delivered by work colleagues,
so he told his line manager. He became the first ‘out’ positive
person to work in the HIV team and his line-manager welcomed his disclosure
as a sign of trust seeing the situation as a learning curve for all involved.
The only area where his status has affected his career has been around practising
his midwifery skills. Here, guidance stipulates avoiding invasive procedures,
which would put patients at risk (so-called exposure prone protocols or EPPs).
The future – positive role models within the NHS?
Attitudes have come some way since the 1980s when HIV
positive doctors were totally unsupported and hounded by the tabloid press.
But Dr Alice Welbourn still thinks it could go further with clear HIV workplace
strategies. “Healthcare systems need to look after their own, and people
must know their jobs won’t be at risk if they get a positive diagnosis.
She wants the NHS to openly retain its positive staff and actively recruit
more because with the valuable insights they bring as HIV positive people.
“I doubt this would lead to all positive staff in the NHS coming out
en masse, but it would send out an incredibly important message, not only
to all positive people in the UK but also to all the different industries
in this country.” The Department of Health and medical profession are
updating protocols for admitting students with blood borne viruses (HIV, hep
C and so on) to medical school. From September 2006 new medical students will
no longer have to undergo a pre-admission blood test. This is because the
doctors’ standards watchdog, the General Medical Council (GMC), says
experience of exposure prone procedures (EPPs) will no longer be needed for
gaining provisional registration in medicine. But medical students will still
be expected to undergo testing during their first year of studies. How someone
who’s tested positive will be managed and supported afterwards is less
clear. Some described the screening for HIV as ‘ridiculous and ill-thought
out’.
ACAS, the conciliation and arbitration service, says ‘testing for the
presence of HIV antibodies is neither useful nor justified for recruits or
existing workers’. It adds that any positive worker suffering unnecessary
discrimination because of their status can now seek redress under the Disability
Discrimination Act (DDA). One HIV positive doctor who approached the Department
of Health about the implications of non-disclosure was told it would only
be a problem if their work involved EPPs. They said the right to confidentiality
was universal. However, the doctor was encouraged to disclose to his OH team.
The department also cited GMC guidelines which encourage disclosure.
They gave the doctor no explicit reassurance about fear of stigma and what
to do if, post-disclosure, things went wrong. The need for across-the-board
HIV awareness and education wasn’t addressed, as if the response of
negative health workers wasn’t part of the equation. Ignorance of status
is correctly seen as a risk, but there’s no view that across-the-board
education must be part of the solution. Good outcomes tend to occur when positive
health workers step forward as pioneers. Legal action is a last resort and
not for the fainthearted. The NHS meanwhile has yet to disclose its own ‘HIV
status’ or even come out openly to say the problem exists at all.
