Chris Sandford is sitting in his office at the Bloomsbury Clinic, one of the UK’s busiest HIV clinics, a step away from the computer-and-sofa-shop Mecca that is London’s Tottenham Court Road. His office is tiny (three people can just squeeze in) but it is sited directly opposite the reception desk; one of the first people new patients are likely to catch sight of is Chris or his job-share colleague Angela. If not, they’ll get to meet them.

“We see nearly all newly diagnosed people,” says Chris. “Consultants, psychologists, health advisers, nurses literally bring them to our door. We have nine appointment slots a week for a first assessment with the newly diagnosed.”

Garry Brough, Chris’s predecessor and now Chair of the Bloomsbury Patient Forum, adds: “We got 38% of all our new patients to do a course for the newly diagnosed last year, a far higher uptake than for out-of-clinic courses offered by voluntary organisations.”

One of our top doctors tells his newly diagnosed patients that, "if you only meet a consultant, you only get half the story", and here I think we've proved the worth of patient advocates at helping patients stay involved in care. Chris Sandford, Bloomsbury Patients Network

Chris, Garry and Angela are not there because they’re qualified health advisers, or social workers, or counsellors. They are there solely because they’re Bloomsbury patients too. The Bloomsbury clinic should probably be the UK’s model for the way it has welcomed patient advocacy as a specific part of its services and has incorporated patient advocates into its management. It does not just give patients support; it doesn’t just have a patient rep on one of its committees as a ‘community adviser’; it has put patients into positions of real power. “I've been on nearly every one of this hospital's management committees,” says Chris.

The disadvantage of getting your feet under the committee room table, of course, is that you can be accused of becoming a poacher-turned-gamekeeper and ending up as just another kind of NHS bureaucrat. But Chris and Garry both insist they remain representatives of, rather than advisers to, their community.

“Our jobs do to some extent overlap with health advisers here,” says Chris, “but we are trusted to act 'outside the box' - sometimes literally, in that we'll meet patients outside the clinic.” In other clinics, there may be less overlap - for instance, where there is a paid assessment and referral post, and patient reps may act more purely as advocates and peer educators.

“We are by definition an 'expert patient',” says Garry. “It's the difference between giving advice and sharing experience. Chris, for instance, saw one patient, who was severely anxious about his diagnosis, refusing to see psychologists or health advisers or to consider treatment, eleven times outside the clinic. We got him back into care, on to medication and even helped him get a job.”

Chris gives another example of helping patients to disclose: “Most recently we've had a couple of women patients who were scared of disclosing to their consultant that they were pregnant in case they got a lecture about safer sex or pressure to have an abortion.”

Referral goes both ways. The patient advocates refer patients to health advisers and counsellors when they have specific psychological or prevention needs and refer to over 80 other organisations. They have an arrangement with Camden Citizens Advice Bureau, which runs an in-clinic session once a week: “We do all the psychological and needs assessments in advance. It can take organisations a while to trust that patient representatives can refer to a professional standard but once they know us they are happy to deal with us.”

Part of the support offered to patients and the means to keep them engaged in their care is referral to the support group, the Bloomsbury Patients Network, which Garry chairs.

This patients' forum was the first patient representative body: “It originally came from a visioning exercise run by the clinic in 1999,” says Garry.  He and colleague Peter Twist volunteered to provide patient input but at first it was a struggle to get other patients interested, apart from a core handful.

Things changed because a specific issue came up – the clinic’s lack of a specialist HIV pharmacy on-site – and Garry and Peter organised a patient survey, which became a launch pad to get people involved. A small grant from the Millennium Awards in 2002 funded monthly patient forums. These still run, alternating news and information forums with experiential workshops. Average attendance is about 25, “though last year the maximum for a forum was 83”, says Garry.

This early success in getting patients involved eventually led to the local primary care trust, Camden, funding Garry’s part-time patient representative post in 2004, and expanding it to a full-time job-shared position in 2006, with the appointment of Angela.

Chris started in 2008, although he had been a volunteer facilitator of patient workshops since the mid-1990s. “We can show that we're cost-effective,” he says. “I pitch for the money for workshops to Camden, and because they are in-clinic and well-attended we can do our whole programme for less than £14,000 a year.”  

The Mortimer Market Centre, the sexual health clinic which contains the Bloomsbury Clinic, is unusual in not being run by a hospital trust, and this may have helped in circumventing typical hospital hierarchies. However, there is no reason why the model could not be replicated elsewhere.

One of the most important factors in structuring patient advocacy into the clinic, says Garry, has been the active support of the clinic's consultants and clinical lead. Lip service to the idea of patient power has not been enough, he says, citing other London clinics where patient advocacy groups have never taken off. The active support of the clinic’s HIV consultant or another key professional with the power to nominate to committees and mobilise money has always been necessary.      

Chris says: “One of our top doctors tells his newly diagnosed patients that 'If you only meet a consultant, you only get half the story', and here I think we've proved the worth of patient advocates at helping patients stay involved in their care.”

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 support them?

“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 past).

“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.”

To contact the Forum Link Project, email admin@forum-link.org or phone 020 7738 0258.

To contact the Bloomsbury Patients Network, email chris.sandford@nhs.net.