SERVICE as USUAL

over a six-week course to discuss their particular long-term illness. They then set up workshops to educate other local patients and NHS staff about how to live with HIV, or whatever

condition they have.
“The course is very interesting,” explains Cass Mann, one of the first HIV positive people to be enrolled on the programme. “But it simply doesn’t work. If you happen to be living in a homophobic borough then you are in trouble. I am from Kingston and Richmond and because there is no legal requirement for each PCT to recognise HIV, they often don’t.
“Every other disease was covered, but HIV was simply brushed under the carpet.”
The waiting game
We await the forthcoming Spring release of the NAT’s report on stigma and discrimination among people with HIV, which may shed new light on the issue of patient discrimination, and, more importantly, to see whether or not the new government proposals come to anything at all.

Where to get involved, apart from complaining when things go wrong
There are plans for patient forums in every hospital NHS Trust and PCT by 2003. Their main role will be to provide feedback on how services are run and how they could be made better. Each Trust board will have one member elected by the patients forum. There should be annual patient surveys and consultation on their results.
In Scotland, “Partners In Change” aims to put the experience of patients at the heart of service change. “Involving People” is a programme aimed at building the Scottish NHS’s capacity to communicate with patients.
By 2003, any major changes in the NHS in England and Wales should be referred to local council Overview and Scrutiny Committees. For the first time, locally elected representatives may get some input to NHS decision making.
Also in 2003, a Commission for Patient Involvement and Public Health is planned with the aim to provide advice, training and set standards for patients’ forums, ensure that local people do have a say (performance management), and report back to government on how it’s all going.