In the letters page this month some readers say they felt PN's last leader ("Why is Patient Power so boring?') ran down the attempts of people with HIV to influence services in their clinics.
With hindsight we could have said it better...but what we were trying to do was criticise the culture that has grown up in the NHS where a confusing multitude of different committees and commissions are set up to listen to the voice of the 'stakeholders'. And then ignore it.
To quote from the independent review of the London Community Involvement Project: "People with HIV are tired of being consulted...and nothing happening."
We went on to contrast this with the sterling grass-roots work that is beginning to take off among the patient groups in certain London HIV clinics. If what we wrote gave the impression we were running down that kind of essential self-help activity, we're sorry, we intended to convey the opposite message, and we'd like to say here and now that we totally support it.
In fact, the UKC is at the early stages of an initiative designed to help patient groups develop and achieve real influence in clinics. We need a transferable model of "How to Set Up a Patient Group" (which could be extended to patients with other long-term conditions, too).
Result? HIV services become ever more medicalised and clinic-centred. Independent advocacy groups find it harder to survive. As a result there is a danger of patients becoming less well informed and more isolated.
Only by getting involved can we make sure that ordinary people with HIV can mantain their influence as the best-informed and least compliant bunch of 'victims' in health and social care. And that ain't boring ... it works.
A tiny bit of 'patient power' we initiated this year was to throw open the UKC Hero Award so that you, PN's readers, first nominated and then voted for your HIV Hero. The splendid and inspiring Nicola Gray duly collected her award on 30 January alongside Liza Minnelli and M.A.C Cosmetics. In a moving speech she thanked, among others, her dear late daughter for enabling her to stand up and say "I'm HIV positive...and I'm not ashamed."
We only wish all eight of your shortlisted Heroes could have won. Each one is someone who has empowered and supported other people with HIV in their local community. Each person got the backing of a considerable block of votes, and in the end the result was very close.
But we'd like to draw attention to one fact: three out of eight shortlisted nominees came from the English North-West. Between them, Nicky, Cate Jacobs and Ron Mowbray, from an area with five per cent of the UK's HIV population, won more than half the votes cast.
Is it something in the water up there? Is it two centuries of socialist struggle against the softy southerners? Or is it just the cultural cussedness that gave rise to The Cavern and the Hacienda, Morrissey and Lowry, working class heroes and battling bombshells? Whatever it is, can the rest of us have some too?
