Few make ‘getting involved’ more
attractive than Garry Brough of the Bloomsbury Patient Network.
Marcel Wiel talks to the fit face of positive people’s involvement in
the NHS
Photos Mike Kear
Walking
down central London’s Tottenham Court Road with Garry Brough, in just
five
minutes, he’s greeted by as many people.
“Gordon Bennett, Garry. I can’t believe you know so many people,”
I say. “Darling, I work in a gym and a GU
clinic,” he says with a cheeky smile.
“I know every gay man in London.” But he’s downplaying himself.
Two days a week you’ll find Garry working as the Bloomsbury Clinic’s
patient representative at the Mortimer Market Centre, one of London’s
leading sexual health clinics, where he and his colleague Peter Twist have
spearheaded a plethora of patient involvement initiatives.
Garry is one of the leading voices in the field of patient involvement in
the UK, a role recognised in 2004 by London Mayor Ken Livingstone with a special
award. When not pushing the cause of the HIV patient, Garry is busy getting
us into shape. His other job, you see, is programme coordinator of the Positive
Health Scheme at the Central YMCA, a short walk from the clinic at the other
end of Tottenham Court Road.
Here he supports HIV positive people to get fit through tailored exercise
programmes. This has led him to undertake rolling out the project all over
the UK.
So what drives this 39-year-old gay man to support HIV positive people?
The only gay in the village
Garry was born in 1967 in the small Welsh mining village of Maerdy, the only
child of hairdresser Sandra Davies and trade unionist John Brough. An academic
high achiever who was always polite, well behaved and very particular about
his appearance, he never fitted in with the boys in his peer group, who labelled
him as gay from an early age.
“I’ve often heard gay people say they always felt different as
kids. That wasn’t the case with me, but everyone else did. The first
time I remember being called names was aged six and that went on until I left
Wales when I was 18.”
Unfortunately the abuse he suffered was much more than ‘name calling’.
On a daily basis he was also beaten up, spat at and pelted with stones.
“The only time I ever fought back was when I snapped and beat the crap
out of someone who’d tormented me for years. Actually, it felt more
painful for me. I just don’t get the pecking order thing. It’s
not the way I work.”
Escaping to London
When Garry left Wales for London to study for a four-year modern languages
degree, his life completely changed.
“The abuse stopped as soon as I left Maerdy. I shut the door on Wales
and I just threw myself into London life. I went out to clubs every night
of the week and got into London’s alternative goth scene, which had
a gay club crossover. At last I was in a group where everyone was different
and I was accepted.”
Like many students though, studies often took a back seat as he got to know
club promoters and started to work with them as well as DJing.
“My degree eventually took me six years to complete. I had to retake
my first year because of the partying and my last year due to the alcoholic
stupor I was in most of the time. That was when I was diagnosed HIV positive.”
By the time he decided to get clean and sober, he was a nervous wreck, agoraphobic
and terrified to speak up in case people got a bad impression of him. Today
he puts this down largely to the sustained homophobic abuse he suffered while
growing up.
The
needy and wounded
“I was full of self-doubt and surrounded myself with other needy, wounded
people, who I could support and who in turn would like me back. Today, I don’t
do that anymore with my friends but rather at work. It’s a job I’ve
found I’m really good at and not a way for me to get approval.”
In 1991, he began working for the film company Columbia-Tristar. A meteoric
rise in the company saw him leap from Christmas temp postroom boy to UK technical
manager by 1995. “It was a fast rise, but I love the movies and I liked
the people I worked with a lot.”
But by then, he’d gone on to develop PCP and Kaposi’s sarcoma
and in 1996 was hospitalised three times. Eventually the workload became too
much, and in 1997 he had to stop work.
Reaching for recovery
Luckily, combination therapy came about and he went onto therapy on his 30th
birthday. Slowly, he was able to rebuild his shattered health, not least thanks
to the YMCA’s Positive Health Scheme. But his body took a long time
to get back into shape.
“Sometimes I wouldn’t even be able to manage all the stairs at
the sports club and had to stop at each landing because my lungs were so damaged.
At the time, what worked best for me was pilates. At last I had found an exercise
I liked which made a huge difference to my motivation.
“I wasn’t sure what to do workwise so went on a two-year drama
course also training as a pilates teacher, which I then volunteered back to
the YMCA as a thank you. For their part, the YMCA always rewards volunteers
with extra fitness training. This led to me training as a personal trainer
and teaching two classes a week.”
Back in action
When the job of programme coordinator for the YMCA’s Positive Health
Scheme came up in 2003, he applied, thinking it would be good interview practice.
To his amazement, he got the part-time job, which he saw as a good way of
easing himself back into work.
His work at the Bloomsbury Clinic came about after a workshop where staff
and patients got together to discuss ideas about how services needed to change
in the new millennium. At the end of that process, one doctor asked him and
another clinic patient, Peter Twist, if they’d be interested in setting
up a patients’ group.
Their biggest issue was how Bloomsbury HIV patients had to queue for their
meds in University College Hospital’s pharmacy in the hospital A&E
department, sometimes waiting for two hours “in chaos.” So when
Garry and Peter found out Bloomsbury patients accounted for 65 per cent of
the pharmacy workload, it was clear there was a need for a dedicated pharmacy
within the Bloomsbury Clinic itself.
A survey of service users revealed a 97 per cent dissatisfaction rate with
the pharmacy arrangements so, within a year, Garry and Peter got a dedicated
pharmacy built and fully staffed. The survey also put them in touch with almost
100 clinic service users. Information could now be emailed out, updating patients
on developments. At last, a meaningful dialogue was established.
Lessons
from the 1990s
Garry’s own experience of dealing with his HIV and alcohol issues had
shown him how effective peer support could be. It was in support groups where
he flourished and got a better understanding of himself as well as a sense
of belonging. This is what he wanted to replicate in a clinic environment.
Garry and Peter had very specific ideas about what was needed, but they were
two white, middle-class gay men and had no idea what people in other groups
wanted, especially African women, who were the fastest growing group among
service users. Luckily, they found their ideas were shared by lots of people,
which led to workshops on topics such as body image and self-esteem, sex and
relationships, holistic therapies, stigma and disclosure.
Garry and Peter received King’s Fund Millennium awards to improve services
in the open-access HIV clinic at Mortimer Market which they have used to develop
and expand the patient network. Monthly Saturday morning meetings have included
workshops on disclosure, body image and self-esteem and sex and relationships.
Meetings are child/carer friendly to encourage mothers to attend. The clinic
has around 1,800 users, of which around 10 per cent now attend meetings. Text
message reminders are sent to patients about meetings.
The increased workload highlighted the need for a Bloomsbury Patients’
Network administrator and, given that he’d been instrumental in setting
it up in the first place, clinic staff went all out to encourage him to apply
for the job. Almost two years on, he’s still at the clinic.
Garry is also playing a role in spreading the word about the benefits of patient
involvement at other sites such as the Chelsea and Westminster Hospital which
recently launched a new patients’ forum.
“A big part of my work now involves the newly diagnosed. To me this
is the most important part of my work.” He also realised he had a wealth
of experience he could call on, ranging from diagnosis, recovery from extreme
illness, medication and side effects.
Community spirit
One of the things Garry feels saddest about is the death of the gay ‘community’
in the 1990s and the closure of all the drop-in centres for positive people.
He believes HIV positive people need to have spaces where they can share experiences
and learn from each other in a safe, non-judgmental setting, even if it’s
only on a one-to-one basis. He feels this desire to make a positive difference
stems from his upbringing by politically active parents in a small mining
community which, despite having rejected him, nevertheless instilled in him
a very strong sense of social responsibility.
“I saw mining communities die during the Thatcher years. And so all
the work I now do is to a certain extent trying to turn the tide on this trend.
I believe we have to help each other through things. I’ve always had
this socialist ethos. If you have the capacity to help someone and it won’t
cost you anything, why wouldn’t you? It makes the world a better place.
It seems logical to me.”
Get involved in your clinic
Bloomsbury Patients’ Network
Email Bloomsusrs@hotmail.com or call 07932 711 448
KVN +ve Patient Forum
Open to users of the Kobler, Victoria and Nkosi Johnson Unit.
Email shaun.watson@chelwest.nhs.uk
Wharfside Patients’ Forum
For users of London’s St Mary’s Hospital. Email forum@wharfside.org.uk
Lawson Clinic
Patients’ representative: Paul Clift. Lawson Unit, Royal Sussex County
Hospital, Eastern Road, Brighton BN2 5B
Living Well courses
Call James Miller on 020 8746 2274 or email livingwell@btconnect.com
• YMCA Positive Health Scheme, more details from info@centralymca.org.uk
• For info on general patient forums near you, call the Commission for Patient
and Public Involvement in Health on 0845 120 7115
• In London, also look at London Specialised Commissioning Group
