Delegates at the afternoon’s opening session heard a range of personal viewpoints from six very different speakers
‘My perspective is based on 49 years living on this earth, 22 of them in recovery,’ said Alistair Sinclair of the UK Recovery Federation (UKRF) as he introduced the afternoon’s Perspectives session. ‘I’ve also worked in social care, on and off, for 26 years, and I’m still in recovery from that,’ he said.
Recovery was an ongoing process of change and self-definition that challenged all discrimination, he told the conference. ‘There are many pathways to recovery – no one has the right to claim ownership.’ It had also sometimes come to be seen as an excuse to dismantle services, he added, ‘but that’s about how it’s co-opted and presented’.
‘Recovery is a move from deficits to assets, focusing on strengths rather than weaknesses,’ he told delegates. ‘If you listen to our politicians, all you hear about are weaknesses and gaps. But people are coming together to organise, mobilise and make a difference – they’re telling a different story. If you look at the things that get done, they’re not done by services. They’re done by families, neighbourhoods, communities, and they always have been.’
UKRF’s values included shared learning and support, self-determination, personal and community strengths and reciprocity, he said. ‘We, as human beings, have a basic human need to give and receive. That’s how we work. As John Ruskin said, “when love and skill work together, expect a masterpiece”.’
The next perspective came from Nigel Brunsdon of Injecting Advice and HIT, discussing naloxone. ‘It’s an opiate antagonist – it reduces the effects of a heroin overdose and that’s all it does,’ he said. ‘It doesn’t do anything else – it’s not addictive, it’s not poisonous, and it’s not a replacement for other overdose interventions.’
It was also not a ‘universal cure’ for overdose, as someone else needed to be present to administer it, he pointed out. ‘But 50 per cent of people who overdose do have someone else with them. That means that 50 per cent of the people who’ve died from an overdose in this country needn’t have.’
Naloxone, was ‘prescription-only, unfortunately’, he told the session. ‘It can only be supplied to the person at risk of overdose, or families and loved ones if there’s a letter of consent from the person whose prescription it is. I’d love for this to be changed.’
Scotland had a national programme of naloxone distribution in place, he said, and 365 overdoses had been reversed since its implementation. While Wales and Ireland had also introduced national programmes, in England it had been ‘left up to localism’, he said. ‘You should all be persuading your commissioners that we need naloxone. Even from a purely economic standpoint it makes sense. You need to get angry. Thousands of people need this drug.’
Delegates then heard from Pete, Emma and Kerry from Lancashire User Forum (LUF), which was now a registered charity with commissioning responsibility. ‘We grew it, based on a few principles – focusing on what’s good and positive,’ Pete told delegates. ‘We’re a grass-roots organisation and service-user led to the bone.’ Public Health England chief executive Duncan Selbie had visited the organisation’s last forum because ‘he saw something different here. He called it “commissioning ahead of its time”.’
‘We had a DAAT that really believed in what we were doing on the ground,’ added Kerry. ‘They put their money where their mouth is and we now have a £200,000 budget that’s been pulled out of services, pan-Lancashire. A consultant psychiatrist’s salary for six months would be about £50,000 but we’ve spent that on social enterprises – photography, art, catering – and six jobs that range from three to 12 months in things like construction, admin and catering. We’ve funded a netball team, a football team, a choir, a boat, £10,000’s worth of training, several environmental projects, recovery hubs. It’s about building people’s recovery capital – opportunities with real depth and weight.’
The ‘LUFStock’ art, music and sports festival had also grown in size from 70 to 270 people in the space of a year, Emma told delegates. ‘What we have here is unity – we’re one group of people with one goal. We’re a family, a community. No matter what your recovery journey is you have an invitation – you belong.’
‘I’m a former chemist robber, which is not a good lifestyle choice,’ outreach worker for the Hepatitis C Trust, Jim Conneely (DDN, January, page 6) told the conference. ‘My recovery journey was a bit reluctant, but once I got into it I really thrived on it.’
He’d had a supportive GP who genuinely wanted to help – ‘a miracle’ – he told delegates, only to then be diagnosed with hepatitis C and told there was ‘nothing’ that could be done. ‘There was no internet then, so I asked around,’ he said. ‘There was no information, no leaflets, but I heard about a support group and then found out about this new drug, interferon. I had to fight to get that – a pretty crappy drug – and I eventually got clear of the virus. I feel great and really feel that I’ve got my life back. Some of that’s down to my recovery but it’s also about my physical health.’
As he travelled around the country in the Hepatitis C Trust’s testing van he found that ‘an awful lot of people think they’ve got it – why?’ he said. ‘But if you’re injecting you need a test, and there is treatment’ – with new breakthroughs all the time, he stressed.
The Hepatitis C Trust was one of the original service user groups, he said. ‘We’re a group of patients who got together because there was no information about hepatitis C. You need the facts, but we’re out there.’ Many people living with the virus were ‘in a daze’, he said, doing nothing about it. ‘I just want to raise awareness – let’s stop the stigma.’
The next perspective came from drug outreach worker Philippe Bonnet, making the case for a drug consumption room in Birmingham (DDN, October 2013, page 16) – a campaign that now had the backing of hundreds of GPs and the local police and crime commissioner. Problems related to street injecting included increased rates of blood-borne virus transmission, abscesses, femoral injecting, needle litter and overdose deaths, he said, while the solution was a ‘simple, effective, pragmatic and humanistic approach’ that was evidence-based. ‘We don’t want a multi-million pound set up, just a couple of portakabins.’
Switzerland had opened the first DCR in 1986, he told the session, and there were now almost 100 worldwide, mainly in Europe. ‘They needn’t be controversial and they’re not a vote loser,’ he said, and they also led to an increase in access to treatment and wraparound services. ‘And nobody has ever died of an overdose in a DCR. Ever.’
The final perspective was from Lester Morse of East Coast Recovery, who described how his recovery journey had led to him to establishing facilities of his own. From helping out at a soup kitchen he’d moved on to setting up houses for people struggling with addiction, often in the face of opposition from the local authority.
‘I’m a service user – I’ve been at the frontline of addiction – and my intention was just to help people. We can talk about addiction, but we need to get you sorted out with the rest of your life. Recovery is the foundation, and the important bit that gets looked over is that MPs and doctors don’t understand the problem.’
His organisation tried to ‘centre everything around the brain’, he told delegates. ‘To have a healthy brain you need a healthy environment, and that’s what we try to create in our treatment centres. We have a coffee shop, we do wood chopping, and people can train for City and Guilds to get good qualifications. It’s based on people helping each other and keeping busy. It’s a real community project.’