Life and death issues

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Drug-related deaths dominated the DDN conference’s Big
Debate session, which gave delegates the chance to put
their views across.

 

‘When people talk about drug-related deaths it’s about numbers and systems,’ service user rights advocate Alex Boyt told the conference. ‘What we need to do is humanise it. I could have been a drug-related death, quite easily.’

‘How many people do I know who’ve died?’ said CEO of Build on Belief (BoB), Tim Sampey. ‘There are so many that I can’t remember all the names and faces. Drug-related deaths isn’t just about heroin – it’s a much, much bigger subject, and we need to be thinking much bigger.

Alex Boyt and Tim Sampey led a thought-provoking debate.

‘What are the things that kill us?’ he asked delegates. ‘One is isolation. We need to be around other people – we’re tribal creatures.’ Another killer was undoubtedly stigmatisation, he said. ‘We’re the most stigmatised group in the country. Everybody hates us, and nobody cares. Everyone you speak to – who isn’t one of us – thinks we’ve brought it on ourselves.’

The majority of people who died were out of treatment, Alex Boyt reminded delegates. ‘It’s great that people are having their ambitions realised in treatment, but you get people arriving in services who are broken, tired, fed up, and then they’re given a whole new set of recovery challenges. There’s something about the nature of services that is not holding and looking after people.’

‘I ask myself, if I went into treatment now, would it work?’ I don’t think it would,’ agreed Sampey. ‘When I went into treatment in 2004 I had piles and piles of support, and it was the community of the drop-in that saved my neck. It’s my grave fear that that’s what’s disappearing. For me, recovery is free­dom from dependence and getting a life. It’s not about abstinence or rules or regulations.’

The main indicator of whether an intervention would be successful was the quality of the relationship between worker and client, stressed Boyt. ‘But now it’s in everyone’s interest to under-report what’s happening – it’s this constant pressure on people to move forward. One manager said to me, “these days we have to get them in and out before we’ve even had a chance to get to know them”. People also talk about hard-to-reach populations, but it’s services that should be doing more to reach them. If you take a map of the drug-related deaths in the UK and a map of the areas of deprivation, they’re exactly the same. Caring for each other sits at the centre of what needs to change in this society.’

‘People will present with a mental health problem at their GP, but they’ll be told they need to deal with their drug or alcohol problem first,’ said one delegate. ‘We should create more environments for people with both drug and alcohol problems and mental health issues, and let people know that having mental health issues is absolutely OK,’ said Sampey.

One delegate agreed that ‘measure­ments and targets for successful dis­charge’ were driving drug-related deaths, while Andria Efthimiou-Mordaunt stated that ‘one of our fellow activists died recently of a, quote-unquote, accidental overdose. We really need to talk honestly about the grief we experience because we don’t really deal with it.’

Drug-related deaths had doubled in just a few short years, Boyt told the conference. ‘If it was some other cohort of the population, that would be front-page news. It all comes back to stigma. As the older drug users are dying, it’s almost like the authorities are just wait­ing till they’re all dead, while constantly saying “we need to do more”.’ What’s mad is that the people who are dying are not in service, while the naloxone doses are being given to those who are in service. But we’re in a situation where the budgets are being cut so severely that people are just clinging on to what they do and not trying anything new. We need to be saturating the drug-using community with naloxone.’

‘I’ve worked in this sector for a long time, and seen it grow from a cottage industry into something huge and commercial,’ another delegate added. ‘I think we need to re-humanise this industry. It’s about people who want to get well.’

‘What we’ve tried to do to reduce overdoses and drug-related deaths is put lots more into aftercare,’ said Simon Cross of Yeldall Manor. ‘But so many people in this country can’t access residential treatment.’

On the question of aftercare, Becca, a worker at Build on Belief (BoB), told the session that, alongside increasing their investment in aftercare provision, commissioners needed to better understand what the lives of drug and alcohol users were actually like. ‘Commissioners sit in a town hall and it’s very easy to cut things when you’re not involved,’ she said. ‘I think it’s crucial that they understand where the money’s going, who it’s for, and that they get some expert-by-experience knowledge.’

‘One of the things I say in my darker moments is that the powers-that-be are funding less and less, and caring less and less,’ said Boyt. ‘There’ll be some areas where there’ll be almost nothing left, so more and more will be relying on peer support. I think their role in aftercare is essential.

‘I have sat in too many meetings where drug related deaths are discussed, he added. ‘They always end with an acknowledge­ment that the figures will continue to rise. It’s almost as if we are resigned to a whole generation dying so we can get the numbers back on track. Brutal stigma devalues the lives of many in the service user community and allows people to look the other way. We need to restore meaning to our losses. Instead of throwing statistics about, sometimes we must simply remember the special people we have known and cared for.’

‘This isn’t about numbers,’ stated Sampey. ‘It’s about people we knew, cared about and loved.’

SOUNDBITES

‘People are dying, and people are ill, and it’s not OK.’
Dee Cunniffe

‘You have voices. You’re at risk. Your friends and family have died. These stories need to be heard – this has to be in the mix.’
Paul Hayes

‘Commissioners sit in a town hall and it’s very easy to cut things when you’re not involved. I think it’s crucial that they understand where the money’s going, who it’s for, and that they get some expert-by-experience knowledge.’
Becca, BoB volunteer

‘Naloxone isn’t a cure-all. It’s just an excellent tool to have, alongside calling an ambulance, CPR and other things.’
Lee Collingham

‘The majority of people don’t have real discussions with their doctor about methadone or buprenorphine now, so what will it be like in a few years when there are something like nine different options available?’
Stephen Malloy

‘You get people arriving in services who are broken, tired, fed up, and then they’re given a whole new set of recovery challenges. There’s something about the nature of services that is not holding and looking after people.’
Alex Boyt

‘There’s nothing negative about service user involvement, but we can’t allow a situation where service users are running the projects while the profess­ion­als sit back and let them get on with it.’
Chris Robin

‘Aftercare is about peer support – and without it I wouldn’t be here.’
Delegate

‘You have a right to non-discriminatory treatment and healthcare. Challenge these cuts, use your organisa­tions, challenge discrimination!’
Annette Dale-Perera

‘There’s a lack of honesty in treat­ment services. The voice needs to come from service users.’
Delegate

‘It’s easy for people to say “he was only a junkie wasn’t he”. I think of Alan, our colleague and friend.’
Beryl Poole

‘We need to talk honestly about the grief we experience. How many more people do we want to bury or cremate?’
Andria Efthimiou-Mordaunt

‘Drugs or alcohol should never define a person.’
Delegate

‘We’re the most stigmatised group in the country. Every­body hates us, and nobody cares. Every­one you speak to – who isn’t one of us – thinks we’ve brought it on ourselves.’
Tim Sampey

‘Keeping the memory alive is really important.’ Delegate ‘Our aftercare runs for at least two years.’
Rachel, Ley Community

‘We’ve got empty rooms all over the city – simple, safe, friendly places. They need to cost barely a penny – just a change of mind.’ Judith Yates