The question of how to apply the Bloomsbury model to other
clinics and encourage the growth of HIV patient advocacy groups led to the
creation of Forum Link in 2004.
Forum Link is an umbrella group whose members include twelve
clinic patient groups and three area service-user forums, mainly in London but
with groups in Brighton and Eastbourne. Paul Decle, the patient representative
for FRONTLINE HIV Forum at the Chelsea and Westminster Hospital’s Kobler Centre,
the UK's largest HIV clinic, has acted as Forum Link’s facilitator. Forum Link is
now undergoing the transition to a fully fledged voluntary organisation and
Brad Hepburn, formerly of north London Oasis and the National AIDS Trust, is
overseeing the change, applying for funding to support a paid development
manager, and seeking trustees.
Paul says: “Garry came to us at Chelsea and Westminster to
talk about how they'd managed to get patient advocacy off the ground there.
Bernard Forbes, representing the patient group at the Wharfside Clinic at St
Mary's Hospital in Paddington, was also there and I said 'I see the potential
for an umbrella group'.”
FRONTLINE HIV Forum is probably more representative than the
Bloomsbury forum of the degree of activity currently possible for most patient
advocacy groups: “We have a very limited amount of pharmaceutical industry
funding. We have meetings once a month and the Kobler's clinical nurse specialist
attends every one, and we will usually get someone in from a specific
department such as the pharmacy. We typically get ten or so patients turning up
although we have about 50 to 60 in regular correspondence on our email list.
“It serves as a really useful channel of communication about
issues that affect patients; for instance, we had a good education session and
dialogue recently on how electronic patient records work.”
Paul Clift is a part-time patient representative at King’s
College Hospital in south London. He comments: “The Bloomsbury Forum has the
advantage of paying its reps more and having meeting rooms. Here, it’s a real
challenge to find somewhere for the patient group to meet.” Nonetheless, with
fewer resources, he offers a similar advocacy and support service, with ad hoc appointments for the newly diagnosed.
Forum Link tries to support patients who are setting up
forums in other clinics. It is fair to say that the patient advocacy movement
has faced a struggle and nowhere else has yet achieved the levels of
involvement seen at the Bloomsbury.
Far from supporting the idea, says Brad, many clinics dread
the idea of allowing a patient representative to have an influential voice in
the clinic. He cites the example of another London hospital where, despite
having a number of highly articulate patients, representation has never really been
accepted. “In the end, we had to tell their patients, 'If you want to come to a
patient forum, come to the Bloomsbury'.”
Paul Clift comments that, in this sort of case, “One way
forward is to try and get buy-in from a range of senior clinicians and managers
who may be collectively able to outvote one powerful but obstructive person.”
The main fear held by healthcare professionals, he adds, is
that treatment and care will be compromised and the decisions of doctors
questioned by ill-informed patients and their representatives. But in a world
where patients are becoming increasingly involved in such things as treatment
guidelines, this paternalist attitude should be a thing of the past. There is
extensive literature to show that the benefits of patient involvement far
outweigh the disadvantages.
“Clinics are now under pressure themselves from the Department
of Health and other managerial bodies to provide patient liaison,” adds Brad. Like
Garry and Paul Clift, he emphasises that the support of a paid ‘insider’ is
essential: “At too many clinics, once a patient rep is there, they are expected
to do everything. No: you have to have an engaged insider to liaise with
managers who may want nothing to do with an 'expert patient' to begin with.”
Things may be changing, slowly: several new patient groups
have started up recently or are in the process of doing so, including ones at
the Trafalgar Clinic in Woolwich, south-east London, and at the North Middlesex
Hospital in north London.
Why does there need to be a specific patient advocacy
organisation when people with HIV have a number of voluntary organisations to
“I hope patient advocacy is a purer model, allowing for more
direct communication from patient to provider,” says Paul Decle. “Voluntary organisations
can be in a position where if they shout too loud, they lose funding and the
lights go off, and their perception of the issues can be distorted by the need
to keep their jobs.
“We feel clinic advocates are in a better position to sense
what the grass roots are concerned about, and certainly our different member
forums consistently report the same issues coming up: GP liaison and shared
care, for instance.”
The same, he says, can apply to internally funded NHS bodies
such as PPE (patient and public engagement) groups: they can self-censor or be
sidelined if they get too critical (“though it depends how the criticism is
brought forward”, adds Paul Clift, citing some over-strident demands in the
“That’s why,” Paul Decle continues, “we are trying to have
as wide a spread of funding as possible and as wide a power base too. We won't
have an executive director, and [we] have three co-chairs from different forums
with different skills and perspectives.”
What advice would you give to patients who want to set up an
advocacy group, I ask.
“Pick an issue,” says Paul Decle, “and do a survey about it
like they did at Bloomsbury.
“Then you need at least three people as your core team: they
had Garry, Peter and Chris at the Bloomsbury. This needs a lot of persistence
to start with and one voice will probably not get heard. You do need a
supportive insider to open doors for you.
“In general, however, we are finding that the message is
getting through, and clinics are becoming less suspicious of patient power.”