Make It Happen!’s opening session heard from representatives of three service user-driven organisations
‘I’m a recovering addict,’ Sophie Strachan of Positively UK told delegates at Make It Happen!’s opening session. ‘I’ve chosen complete abstinence. I’m also HIV-positive and have been living with HIV for 11 years.’
Positively UK had been an established charity since 1987, she told the conference, after being set up in someone’s living room. ‘We go to clinics and prisons and we’re all living with HIV – it’s the therapeutic value of one person helping another. We’d love to go into more prisons but we don’t receive any funding for that.’
Her organisation also had a mentoring programme, she told delegates – recruiting and training people to Open College Network accreditation level – as well as a pregnancy project, a youth project and a forthcoming a children and family project. ‘It’s that single intervention of alleviating isolation, because so many people with HIV live in isolation.’
Issues for HIV positive drug users included co-infection of hepatitis C and drug-resistant TB as well as denial of problematic drug use and their HIV diagnosis, she said. ‘I have a big group of friends and some of them don’t want to get tested, but there are so many positives – excuse the pun – about knowing your status. Knowledge is power – you get to look after your health and reduce onward infection.’
Anyone living with HIV knew the impact that the associated stigma could have, she told the conference. ‘At one point it was thought that having access to treatment would help to reduce that, but that hasn’t happened. People aren’t informed, and we can play a key role in that – I’m one face of thousands of people living with HIV.’
Peer support was vital, she stressed. ‘When I got my diagnosis I was in prison, and it was another positive person who sowed the seed of hope. We know that peer support works.’
Positively UK was also involved in lobbying, advocating, capacity building and human rights awareness, she said, producing a report called HIV behind bars that looked in depth at human rights abuses in UK prisons, including gender-based violence.
‘I’ve turned my HIV into a gift,’ she said. ‘I felt so powerless when I was given the diagnosis – I was raging – but I’ve turned that around. No one should have to deal with a diagnosis alone. And they don’t.’
Danny McCubbin of the San Patrignano UK Association described how the Italian long-term residential rehab facility had helped more than 25,000 people since it was founded in 1978, with a 72 per cent success rate and 1,300 people currently on the programme.
‘It’s similar to a kibbutz,’ he said of the Rimini-based community. ‘Everyone gets involved in the cooking and farming and helping out.’ San Patrignano had quickly begun selling its own produce and was now firmly established as a social enterprise, he explained, marketing a range of products including furniture, glassware, ceramics and cheese. The facility received no government funding but raised millions of euros a year through sales and charitable donations. ‘When I first visited I expected it to be very hippy-herbal, but nothing prepared me for the enormity of it,’ he said.
‘There’s no one story when it comes to addiction – everyone has their own story,’ he stated. ‘At San Patrignano young people are given the context to confront why they took drugs in the first place, and after that they can start to rebuild their lives.’
The whole process took three to four years, he said, with the first the most intense. ‘It’s very, very hard work and there are a lot of rules. The first year is incredibly strict, but when people come to the community they learn to respect each other.’
The UK association helped people to go to San Patrignano and offered opportunities to those who had been through the community, he said, and its aim was now to make links with like-minded organisations. ‘It’s very challenging for young people in this country to have a voice in terms of what they want for their recovery. What I love about the community is that it’s based on the individual. It offers a chance for young people to develop lasting skills and build pride in their achievements. It’s one of the most successful drug rehabilitation projects in the world, and I think that governments should really be taking notice.’
David Lawson of DISC’s peer-led recovery community, BRIC (Building Recovery in Communities), then told the conference what had led him to user involvement. ‘My childhood was quite happy – I enjoyed school and sports and I went on to be a sea cadet. I wanted to join the marines. So how did I go from that to living in the back of a shed in Grimsby?’
He’d been in and out of prison since 1986, he said, and as his drug use grew so did the length of the sentences. ‘I knew that I was going to die. All my relationships had been ruined, and I felt safe in prison.’ After he was released, however, he made the decision to engage with treatment services.
‘Accepting help was my first step on the road to recovery. Recovery is everywhere, all around us. We might not see it but it continues to grow, and everybody’s journey is different. I reduced in the community – with the right support it is possible to detox in the community. I’m also a member of NA and I used to go around saying that was the only way to do it, but it has to be about choice. It’s horses for courses – that’s the only way – and as I’ve healed my family have needed time to heal as well. I’ve become more responsible and started to build up relationships with them.’
Part of how that had happened had been through user involvement, he stressed. ‘It’s all about relationships for me. For many years I distanced myself – through guilt and shame – and it was difficult for me to have relationships. All of that’s changed now, through recovery. It’s also about looking after myself, because I’ve damaged my body. But I want to live.
‘The last thing I wanted to do was work in services, believe me,’ he told delegates. ‘It can be challenging, we can be adult babies – we want what we want and we want it now – but I get so much from working with people. You’re all flying the flag for recovery, and showing that recovery is possible. We made this happen.’