“No Decision About Me without Me” was the strapline for the first conference of people living with HIV in the UK since Positive Action in 2008.

One hundred and thirty people living with HIV came together in London on 24 September to talk about the issues facing us as a patient group and as members of society. Issues which stood out included: changes to the NHS and social care; HIV and ageing; HIV and young people; HIV prevention for positive people; advances in treatment; and the use of new media in activism.

It’s interesting comparing discussions here with the ones back in 2008 and realising how much our world has changed.

The two most prominent issues at the 2011 conference weren’t predicted in 2008: the wholesale reform of the NHS and of public health and the related cuts to HIV health care, social care and prevention.

The Chair of the All-Party Parliamentary Group on AIDS, Pamela Nash MP, opened the conference. She said that late diagnosis remained one of the greatest challenges to HIV health care and saw it as largely being caused by stigma: as a gesture against stigma, she was about to take an HIV test herself and would announce the result on World AIDS Day. She also emphasised that opportunities for diagnosis are still being missed. Budget-cutting not only means loss of services but loss of a generation’s expertise.

Stigma and poverty blight the lives of too many. Jonathan Grimshaw

Jonathan Grimshaw MBE, one of the first people diagnosed in the UK, gave a plenary speech. Asking what ‘activism’ was, he named six overlapping components: mutual peer support; advocating for treatment; self-empowerment; involvement in decisions; asserting human rights; and combating stigma.

The biggest challenge to the continuing empowerment of people with HIV was that the current model of HIV care was unsustainable, he said. “Because treatments are successful, there are now 100,000 of us, and we are seeing some social care and even some treatments withdrawn or restricted. Stigma and poverty blight the lives of too many.” The ageing of the HIV-positive population and how to resource their future medical and social care needs was also problematic.

Not all the HIV-positive population is older: a member of the Children’s HIV Association’s youth committee spoke about her own nervousness about being an activist. “I don’t feel like a ‘vigorous campaigner for a cause’; I just want to make a change,” she said. “The challenge is to get young people involved without scaring them off.”

Neil Beasley, a Terrence Higgins Trust (THT) board member, mapped out the health and social care landscape of the next few years. One challenge is money: THT had a 25% cut in statutory income this year and it expects next year to be worse.

Another challenge is that HIV services will be commissioned by two very different ends of the health spectrum. Under the Health and Social Care Bill (due to be discussed in the House of Lords in October), HIV health care and treatments in England will be commissioned by the NHS Commissioning Board, a new non-departmental public body (previously known as quangos); on the other hand HIV testing, STI services and HIV prevention services will no longer be run by the NHS but by local authorities, as part of an expanded public health remit.

The dangers of fragmentation are obvious, as is the striking lack of primary care and GP involvement – an opposite pattern to other chronic health conditions such as diabetes.

A workshop on health and social care uncovered a number of opportunities for patient power within the new structures. From this month, local authority prevention and testing services in England are being overseen by health and wellbeing boards whose job is to co-ordinate services. They will include councillors, GPs and the local directors of public health and social work but must also have patient representatives.

Another opportunity to get involved in England is through HealthWatch, local authority ‘consumer forums’ that are part of the Care Quality Commission and will replace the current LINks (Local Involvement Networks) from October 2012.

How to get involved at the ‘top end’ and influence the NHS Commissioning Board is more problematic, but one opportunity may be provided by NICE, the National Institute for Health and Clinical Excellence. NICE’s Evidence Accreditation Criteria are now applied to the production of BHIVA guidelines – not only on HIV testing and prevention, but also the next set of treatment guidelines – to ensure patient involvement in their production as well as assuring the quality of evidence used.

On the local level, HIV Forum Link, up till now an ad hoc federation of clinic patient groups, is seeking voluntary organisation status and may provide a more co-ordinated patient voice in the future alongside the UK Community Advisory Board.

At the end of the day, Jonathan Grimshaw remarked on the constructive and engaged atmosphere at the conference and the lack of over-strident demands. Although people with HIV may face a straitened existence in the future in terms of benefits and treatments, the system is not automatically loaded against us and the opportunities to have your voice heard are, if anything, better than ever.

Slides from the day are available on the Positively UK website: www.positivelyuk.org/conference.php

For the report from Positive Action in 2008 see the National AIDS Trust website: www.nat.org.uk/Living-with-HIV/Tell-us-your-issues.aspx or download a PDF of the conference summary report: http://bit.ly/p2D8Py