Since 1996 when more effective HIV treatments were introduced, the number of HIV-related deaths has dropped dramatically. In 2001 there were 235 deaths reported compared with 1,516 in 1995.
However, the number being diagnosed is not decreasing, so the number of people living with HIV in the UK – believed to be currently around 50,000 – is increasing. It is estimated that about a third of these people have not yet been diagnosed. HIV treatments can be daunting, but can also dramatically improve people’s lives, as long as they are taken in the correct doses and at the exact times.
Understandably, living with a potentially life-threatening infection which could be passed on to someone else can be stressful and difficult. People’s view of treatments, access to information and support, and coping with side-effects can all make starting, sticking to or changing medication problematic. And this is where a new Brighton-based but Sussex-wide service helpfully steps in. The Living Well Mentoring Project, run by the Terrence Higgins Trust South, provides well-trained volunteer mentors who in turn provide one-to-one practical support for people with HIV about their treatments.
Aaron Sumner, who became involved about a year ago, says: “I’ve lived in Brighton for about eight years and wanted to do something constructive within the HIV community.”
“Treatments are a good thing,” says John, another mentor. “The results are good if you can stick at it. That’s why doctors are prompting you to take it. I try to get that message across.”
And it’s clearly working. As one service user says: “What can I say? Without this fabulous project, I don’t think I would be here to tell the tale.”
Following referral and assessment, and as long as a service user meets the project’s criteria, they are linked to a volunteer. “I’ll introduce them and leave them for 15-20 minutes – a very brief get-to-know-you,” says mentor co-ordinator Lisa Knight.
The support provided is weekly and for limited time, usually three months. “People work towards a plan together and the whole idea is to create or promote independence: working with service users on their coping skills to find ways to make decisions at whatever stage they are within treatment,” Knight says.
She adds: “People might want to talk to someone who is unrelated to them and not a professional person who is going to make judgements on them.”
The project aims to enable people to look at things in terms of their lifestyles. For example, are they mentally prepared for treatment? Have they told their work colleagues that they have HIV?
Indeed, work-related concerns figure highly. Sumner says: “The person I linked up with had stayed off work so there was the issue of going back to work and managing the medication. Trust was a big issue as well and I built up a good relationship.”
Mentor Gerry Connolly says: “My link-up was not so much about medication adherence, although that was discussed. This guy had no experience of the community in Brighton. I was able to direct him to where he could go and where he could find help – simple things, but they managed to take the pressure off him.”
The project keeps plenty of information and what they call “adherence aids”. Knight says: “We have all sorts of different containers, for example, that people can keep pills in – so that it’s not obvious people are on medication. And there are different cues that people could use – putting your pills by your toothbrush or the coffee jar to remind you to take your medication in the morning. Mobile phone alarms seem to be the most common one at the moment.”
With the number of people living with diagnosed HIV in the UK set to increase by 47 per cent between 2000 and 2005, the project look sets to grow in impact and influence.
“It’s a very rewarding experience,” concludes Sumner.
For more information contact Lisa Knight on firstname.lastname@example.org
Scheme: Living Well with HIV Mentoring Project
Location: Brighton, East Sussex
staffing: One full-time mentor co-ordinator and nine volunteer mentors
Inspiration: To provide practical support for people with HIV about issues with adherence to treatments
cost: Home Office funding of £65,000 over three years