I’ve been a lived experience practitioner for 18 years, and it’s been a tough call,’ Jamie Poole, lived experience project lead for Surrey County Council’s Changing Futures programme, told the conference’s first session. Pervading stigma had meant sometimes overhearing things like ‘you’d better hide the petty cash’, he said. ‘That’s some of the stuff we encounter, so we’re about changing cultures and educating people.’
Changing Futures was a joint £91.8m initiative between the Ministry of Housing, Communities and Local Government (MHCLG) and the National Lottery’s community fund. Operating in 15 areas, it was designed to improve the lives of people experiencing multiple disadvantage, he said. The objectives were to test and innovate new approaches, with wraparound support available for up to two years. ‘We really work around a trauma-informed relational model where the support isn’t rationed.
‘Everybody comes with complex problems,’ he told delegates, which is why it was important to widen the net to include things like adverse childhood experiences (ACEs). ‘We’re looking to go upstream. We’re an adult service but we need to look at interventions much earlier.’ What ‘multiple disadvantage’ ultimately meant was ‘multiple disadvantage to the service’, he said. ‘Services like to turn it around and say it’s about the individual – that they don’t meet the criteria because of their many challenges’.
SYSTEM CHANGE
The initiative’s objectives were not only to meet the needs of people who had fallen through the gaps in the system, but lasting system change. ‘Don’t open the gate and then shut it again,’ he stated. ‘Open it and then smash the fence down – disrupt it, challenge it. We need lived experience to be at the forefront of developing and commissioning, not just tokenism.’
The team had worked to get the local five-year Joint Strategic Needs Assessment (JSNA) document co-produced, he said. ‘Lots of people are signing up to this, and our Changing Futures lived experience group started to do some peer research training to get involved with a co-produced document that could really be a game changer in our area. But we had to be really robust with our methodology, because we knew this ship needed to be watertight.’
However, the ‘efficacy and authenticity of the document shone through’, he told the conference. The ’golden strand’ was lived experience – and the fact that the governance had been led by lived experience meant that ‘they couldn’t challenge it within the system, because the evidence was saying it. There was a genuine moral justice.’ Comprehensive independent reviews were vital, he said, rather than services simply ‘marking their own homework – of course they’re going to say it’s good. Let’s have some proper research around what’s working and what’s not. Let’s be brave and make it more inclusive. We’re very early in our journey, but we’re really moving forward, and there’s a momentum there to really make this happen and make the system more accountable.’
SENSE OF PURPOSE
‘Where I found myself was never the place I wanted to be,’ said Zack Haider, community development director for Intuitive Thinking Skills (DDN, July-August, centre pages). ‘I always wanted respect and a sense of purpose. Once I’d left services that’s what I set out to do – to regain my identity.’
He’d had a heroin and crack habit and spent 20 years homeless from the age of 15, he told delegates. ‘So I saw quite a lot of things in that time, and learned a lot of skills. To me language is an incredibly important thing because I hate labels. I’ve lived with labels all my life – mixed race, homeless – and I just wanted to return to my identity as a human being. We don’t have to hold people to ransom for their past forever.’
The point was to use lived experience for power and change, he said. Twenty years on, Intuitive Thinking Skills – the organisation he’d helped to launch – had almost 160 staff across the country. It delivered behaviour change programmes, ‘but it’s not forced – it’s about them and what they want in their lives. We passionately believe that anyone can change and become a role model for others, for their family, for themselves.’
The key thing that he always stressed to people was the importance of getting purpose back into their lives, he said, something that could be achieved through Individual Placement and Support (IPS). This was intensive, and tailored around people’s needs. ‘As we know, one of the big challenges is “What if I do get a job and they find out about my past – will it be held against me?” Stigma does exist.’
SOCIAL INTEGRATION
Gaining an identity in the workplace was incredibly important, he said, as well as the ‘clear direction of travel’ provided by work. ‘Everyone in this room has talent – it just needs to be explored. That’s the whole principle of IPS. My self-esteem had been shot to pieces – I didn’t believe in me, so I didn’t expect anyone else to.’ Work provided structure, routine, responsibility and social integration, he said. ‘It becomes an antidote.’
While there had been numerous government employment schemes over the years, what was different about IPS was that it was voluntary – ‘so no one’s forcing anyone’. Intuitive Thinking Skills’ IPS service was called i-SET – ‘as in, I set the goals, I set the place, I set the pace. This is not done to them,’ he told the conference.
IPS was also genuinely competitive, however. ‘You have to do the interview and get the job – it hasn’t just been put aside for people with addictions. So people’s ambitions really do come true – if you take it seriously. I helped set up Intuitive 20 years ago and we’re now part of an organisation that works in seven countries. If I can do it, anyone can do it – it’s about re-setting that button. No matter who you are and what you’ve been through, you have a right to your identity, your dignity and your independence. Let’s focus on what’s strong, not what’s wrong.’
COLLECTIVE RECOVERY CAPITAL
‘Inspiration and the desire to help are hard-wired human attributes, and a force that needs to be ever-present in our day-to-day work,’ said Jon Roberts from the Leicester-based peer-led social enterprise Dear Albert. ‘Part of our job as LEROs is to ensure that this is a collective, coherent, cohesive force – the harnessing of collective recovery capital from across the whole system, and directed as an energy for positive change.’ It was energy that needed to go beyond ‘the ferocious, energetic nature of hardcore addiction’, he said.
In his own journey out of addiction he’d been given ‘time and hope’, he said. ‘Let’s not forget to always be offering those.’ Bringing what residential rehabs delivered to much wider audiences in the community – and at a lower cost – was ‘precisely what LEROs can do, and we need to be doing. With innovation, quick decision-making, and while staying true to our values. Having the confidence that what we do can actually help’.
Addiction was a ‘warzone’, he said. ‘So how can we help in making the journey from war to peace? It’s clearly a complicated question, and an answer will be found in us all working together.’ At his first DDN conference around a decade ago – ‘fresh out of residential rehab’ – there had been ‘academics, teachers, specialist doctors, MPs, prescribers, pharmaceutical companies, technological innovators, national providers’, he said. ‘And I thought “this is big. There are huge resources available”.’
MAGIC INGREDIENT
Lived experience was the magic ingredient that brought all the building blocks together, he told delegates. ‘Let’s use it well. LEROs need to be building teams, supportive environments and effective programmes. In other words, people, places and things, one day at a time. And one day I believe all treatment services will be built that way.’ Partnerships were central to this, he stressed – ‘the ability to harness that collective recovery capital’. Solution-focused partnerships could foster respect for each other’s abilities, strengths and differences – ‘community and professionalism coming together.’
With Dear Albert this had meant things like employing peer mentors, establishing a breakfast club, daily outreach, naloxone distribution, and ‘bringing the message of recovery to wider audiences with the help of established providers. We’re grateful to Turning Point, commissioners and everybody else for a willingness to be open to shared learning. Ultimately LEROs will need to become more professional than the professionals, and that’s a tall order. It’s not for the faint-hearted, but it can be done.’
Turning Point had been delivering treatment services in Leicester since 2016, said operations manager Andrea Knowles, ‘and our partners at Dear Albert have been working with us right from the very beginning.’ Initially this had been focused around mutual aid, access and making sure that recovery was visible in the community. ‘Then the team started working with our aftercare offer and have made some amazing impact in that area. Now we’re really working across the board together – coming in right at the beginning of someone’s treatment journey.’
One of Turning Point’s core values was the belief that everyone had the potential to change and grow. ‘So everything we do as a partnership is around that person-centred focus, coming to them where they are at any one time. I’m really proud of the partnership we have in Leicester. By working together we really see the needs of our community and we’re able to build services and systems that really work for the people that we’re here to support.’
FIGHTING TO SURVIVE
Originally from Zimbabwe, Andrew Mtizwa-Mubayiwa had been teaching in the UK when addiction issues led to the collapse of his marriage. Interviewed by Hannah Mordey of the Social Interest Group, he told the conference that this was followed by him becoming street homeless for 15 years. He’d been on a spouse visa, which had been revoked following his marriage breakdown. ‘So I became illegal. I couldn’t go home and at the same time I couldn’t stay. I probably found the wrong solution for my problems – I went deeper into addiction. It was the only way for me to find solace.’
Fear of revealing his immigration status meant he was unable to access services, and it also changed the way he interacted with people, he said. He moved around – from Cardiff to Bristol, Bath and then London. ‘It was very frightening. Every day I had to survive. I met some wonderful people, but I always kept my addiction secret. I was begging, and people would ask what I needed the money for – “tell me, I can help you”. It hurt me so much that I couldn’t tell them my situation because I was illegal and wanted by immigration. I kept it secret for years and years.’
Finally, he confided in a worker at St Mungo’s. ‘I was tired. Things were so bad that I needed help.’ He was put in touch with an immigration solicitor who told him that after 20 years in the UK he’d be able to apply for leave to remain, regardless of his legal status. ‘So this meant another eight years. It wasn’t easy, but I just managed to retain that sensibility of “at least I’ve got a life”. I always tried to keep myself in a reasonable state.’
He was finally housed thanks to the ‘Everyone In’ programme for rough sleepers during COVID, which also coincided with him being granted leave to remain. ‘So Corona in a way was a blessing in disguise,’ he said. ‘It was the first time in 15 years I’d managed to sleep in a bed and have a decent bath. I used to sleep on the bus when it was cold, and one time I’d gone for six months without bathing. I got on the bus and everyone just got off. I cried.’
He’s since returned to college – where he was named student of the year – and has recently had a book of his poetry published. ‘Everybody here today will know that when you try to remake your life and you want to start again, there are barriers – and that’s when people should come together. I was going to college but I wasn’t healed. You need time to heal and do normal things, eating good food, sleeping. If you try to rush, it’s disastrous.’
Watch video footage of session one here.