‘The Shrinking Bunch’ – Gscene speaks to local anti-stigma campaigner Alan Spink

Alan Spink works with a number of local HIV agencies across Brighton & Hove and further afield across the south east, supporting those living and often isolated with HIV. He trained as an HIV peer mentor with the Sussex Beacon and now works with it as an HIV caseworker funded by the Big Lottery Fund. He is 63 and has been living with HIV for 17 years. I asked him to map out what he considers to be the challenges facing those ageing with HIV, both in terms of those he works with and in his own circumstances. Alan is also the brains and creative behind the local anti-stigma campaign featuring Stigmasaur with the Martin Fisher Foundation.

Can you map out the challenges faced by those living and ageing with HIV?

‘In general terms there’s a marked different between what are known as ‘long-term survivors’ and those diagnosed after the advent of commonly used anti-retrovirals in 1996, so I would say for those diagnosed post 1998/99 their lives are, in most cases, likely to be more straightforward. For the longer-term survivors, their bodies are crumbling. They suffer with osteoporosis, some with crumbling spines, have hips replaced sometimes twice and many are in constant pain.

‘Then there are the mental health issues. Many have experienced rejection on multiple levels, often as a direct result of being HIV+, many rely on benefits and it’s an indescribable struggle to survive on the state. The boundaries for disability benefits shift every few years and our clients find that everything has to be reassessed again. It’s the simple things. An individual may qualify for a disability bus pass and then five years later have to re-prove they qualify again.

‘A lot of these people are surviving on charity. In Brighton & Hove we’re fortunate because of all the different charities involved that we have, the most in such a concentrated area in the country, and it’s still difficult here. It isn’t like this all across Sussex. For example, Hastings, the HIV clinic is great, very supportive, but that is all they have. You don’t imagine that poverty of resource in somewhere as wealthy as Sussex.

‘Many of those relying on such services live in poor quality social housing. HIV+ ageing people are low on the council’s priorities, access to GPs is difficult and with appointment ‘rules’ such as you can only talk about one thing at an appointment – these patients have multiple health complaints. In some parts of the country there isn’t a local HIV clinic in the way that we have them, all of their services are through the GP and GPs are stretched.

‘The Lawson Unit [local HIV clinic as part of the Royal Sussex Country Hospital] is quite remarkable. If it’s concerned about a patient it will work with charities and other agencies to support the individual. It’s incredible.’