Advocating for change

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An inspiring session at DDN Conference heard representatives from user involvement and engagement programmes describe the power of effective partnerships.

Dee Cunniffe: ‘If you treat people now, they can be cured. This is about people, and real lives.’

‘We all need to make efforts to raise awareness and heighten perception,’ policy strategy facilitator for the London Joint Working Group on Substance Use and Hepatitis C (LJWG), Dee Cunniffe, told the conference. ‘People are dying, and people are ill, and it’s not OK.’

Her organisation’s mission was to prevent new hepatitis C infections in – and help treat – people injecting drugs in London. ‘We also want to eliminate hep C as a public health threat among people who inject drugs,’ she said. There was a ‘massive burden’ in terms of hospitalisa­tions and deaths from end-stage liver disease, she stressed. In London in 2014, there had been more than 2,000 hospital admissions for people with hep C, with the virus also responsible for almost one in four first liver transplants.

The LJWG’s objectives were not only to prevent further infections and in­crease testing, diagnosis and treat­ment, but to raise awareness of the public health threat, she said. The organisation was engaged in active case finding in needle exchanges and would soon publish a report on barriers to treat­ment, as well as a data linkage project.

In England, 50 to 80 per cent of injecting drug users became infected with hep C within five years of beginning to inject, and while there were 215,000 people with hep C in the UK, and far more effective new drugs available, health services were only financing the new treatments for a fraction of that number, she said. In London, there were an estimated 60,000 people living with hep C, yet the NHS target was to make the new treatments available to only around 5 per cent of that population. ‘If you treat people now, they can be cured,’ she stated. ‘This is about people, and real lives. Services are now expected to do far more with less.’

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Mark Fitzgerald: ‘People used to say to me, “you’ve got a mental health problem” and I’d say, “of course I haven’t, don’t be daft”.’

The session’s other speaker, Mark Fitzgerald, described the hugely positive impact of getting in­vol­ved with Mind Birmingham’s flagship user involvement and engagement programme, Every Step of the Way, which trains, supports and empowers people with multiple needs, and is part of the wider, Big Lottery-funded, Changing Futures Together project.

The programme had finally allowed him to turn his life around, he told the conference. ‘This is my 22nd year of sobriety, but even in all those years of sobriety I still had a lot of problems. I didn’t drink, but I still didn’t know what was happening in my own head. People used to say to me, “you’ve got a mental health problem” and I’d say, “of course I haven’t, don’t be daft”.’

After years of ‘trying to find out what was happening’ he eventually came to Every Step of the Way, however. ‘I told them, “after all my years of sobriety, here I am, and I want to get involved.” They took me through the steps, and finally the penny dropped.’

He was assigned an engagement development worker who slowly guided him through the process, he said. ‘I found out I’d had mental health issues from a young age, and that I did have complex needs. They help you move on with your own personal progression – after years and years of trying, in the last couple of years I’ve found out what makes me tick. I started reading all the books about mental health and depression and anxiety, and even though they were written 20 years ago it was as if they were written about me.’

The programme has not only allowed him to come to terms with his mental health issues, but to re-start his education as well. ‘They pushed me in all sorts of different ways, and now I’ve got my diploma from college – I didn’t think someone my age could get educated. It just gives you the chance to move on and progress with your life. After becoming sober after all those years of alcoholism I thought, “I’ve done it, I’ve done it”, but I didn’t move on, really. The last two years have been the best two years I’ve ever had.

‘I’ve learned how to talk, how to engage, and how to not put obstacles in my way,’ he continued. ‘I didn’t know I had the answers, but they’ve given me the knowledge to learn about myself and find out what’s happening. When people used to say to me, “you’ve got complex needs” I’d say, “of course I haven’t – it’s just addiction”. But I ticked all those boxes.’

The programme had finally allowed him to address and tackle his inner fears, he told the conference. ‘It’s only with the help of Every Step of the Way that I’m standing up here talking to you.’