Time for social action

Social action is the way forward in tackling complex needs, hears DDN.

The All Party Parliamentary Group (APPG) for Complex Needs and Dual Diagnosis recently launched a call for evidence around social action (DDN, May, page 5). With a detailed questionnaire, the group wanted to know what factors could really make a difference in helping people with complex needs. How could challenges be addressed around giving access to housing, employment opportunities and mental health services, alongside substance misuse support?

‘There are a lot of complex needs out there and not enough integrated services to address them,’ says Lord Victor Adebowale, chief executive of Turning Point, which provides the secretariat for the group. ‘What we’re talking about is a big problem – 70 per cent of people in drug services and 86 per cent of people in alcohol services experience mental health problems.’

Lord Victor Adebowale: ‘What we’re talking about is a big problem – 70 per cent of people in drug services and 86 per cent of people in alcohol services experience mental health problems.’

Add to that the 55 per cent with ‘severe multiple disadvantage issues’ and the four out of five prisoners with at least two mental health problems and it’s easy to see how the cost to society is reckoned to be at least £10bn a year. Unsurprisingly, most suicides occur among patients with a history of complex needs, and many psychiatric patients have substance misuse problems.

The Office for Civil Society, with its newly appointed minister Tracey Crouch, approached the APPG to undertake a call for evidence around the notion of social action – the idea that community-led initiatives and involving people with lived experience should be a natural and logical part of service design.

‘What I mean about social action is people coming together to improve their lives and solve the problems they report in their community,’ says Adebowale, adding that it’s an area that Turning Point knows well through its work on ‘connected care frameworks’.

The call for evidence involves a detailed questionnaire, circulated around many organisations including the substance misuse sector. The response has been heartening, says Adebowale, with detailed contributions from ‘a massive range of organisations… there’s clearly a lot if interest out there’.

‘We’ve received a lot of evidence from peer mentors themselves about how social action contributes to people’s recovery, self-worth and confidence, talking about their routine and the benefits peer mentoring can have – lots of living proof that change is possible and offering hope,’ he says. ‘So the question is, how can social action improve outcomes, prevent crisis, support recovery and develop more responsive services for people with complex needs?’

Next stage will be to produce a report over the summer, bringing together case studies, examples, key learning themes and ways forward, based on the evidence received and the discussions that take place at an imminent roundtable event for health and social care leaders.

‘We’ve got lots of positive evidence that social action improves employment skills, and we’ve also heard a lot on reducing stigma, both in the community and in the individual,’ says Adebowale. Many of the suggestions involve ‘breaking down the barriers between people with lived experience and so-called professionals’ and improving understanding of how to reduce stigma as a means of promoting recovery.

‘We’ve also had lots of evidence about peer mentoring giving a sense of belonging and responsibility,’ he adds. Build on Belief (BoB) were among those to talk about social actions and peer-led activity as a counter to loneliness and isolation, ‘which I think is a real issue here for people with complex needs.’

So how will this work galvanise the political process and have an impact? ‘That’s one of the challenges for the roundtable and the whole point of this work,’ says Adebowale. ‘We’re building the evidence case and there are challenges. Social action programmes are often dependent on a few, or just one creative person, and that person can disappear. Services take time to set up and become effective, and one problem at the moment is that funding cycles are often very short for projects to develop. And there can be issues – boundary issues and that kind of stuff – around getting individuals to work in an effective environment.’

But he is optimistic on ‘moving the needle on engagement activity’: ‘We’ve received quite a lot of evidence about what the keys to success are – dedicated staff, a partnership approach and personalised support for individuals. We’ve got some key people involved, including the minister for civil society… it’s also exciting that we’ve managed to engage NHS England.’

Key players are expected at the roundtable, including chief executives and directors of the NHS, charities, funding bodies, LGA, and Collective Voice.

‘We’re looking to make this work and to lift the lid on it – and to really shift what government does to encourage commissioners to learn from this,’ he says. ‘It has to be quality led and outcome based – and it has to be delivered in a way that makes sense, rather than cutting corners.’

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What would make a difference to me?

Given I have a number of complex issues and engage with multiple agencies, I was asked by DDN to write a little about my current experience.

I’m a 48-year-old single white British male and not only do I have HIV, but also ongoing mobility issues due to post-thrombotic damage in both my legs. I have multiple mental health issues: as well receiving help for a history of addiction I also suffer from a persecution complex, anxiety, depression and paranoia, all of which have worsened as I try to navigate through welfare reform.

Having been in receipt of Personal Independence Payment (PIP) for the last four years, I was invited on 2 June, albeit a year early, for reassessment of my mental and physical health needs. However, despite both my physical and mental health worsening, my score went from 13 to zero in the space of 18 months.

Despite numerous times offering to provide further medical and photographic evidence at my assessment, I was repeatedly told, ‘If you don’t stop offering me medical evidence then we won’t have time to complete your form.’ I subsequently failed my assessment and am currently appealing their decision, which unfortunately started the ball rolling for the problems that were to come.

Despite being in receipt of a number of benefits, because my PIP was suspended housing benefit also decided to stop any payments, despite me being in receipt of ESA [Employment Support Allowance], which subsequently meant letters from my housing association threatening eviction because my rent wasn’t being paid. I was never informed of any decisions until after they were made and had started affect my circumstances.

After speaking with DWP they informed me that this was purely an error on behalf of housing benefit and in fact they have the facility to check what claims are current for each client. However if they don’t know how to use the system, or fail to use it, the knock-on effect can be devastating.

Because I appealed against their decision, in the last six weeks not only has my benefit entitlement been cut by around 70 per cent, but also because of employee incompetence my housing benefit was stopped and in the last week I’ve received three letters of notice to quit by my landlord, despite numerous calls to DWP and housing benefit to rectify this situation and their error.

Not only has it affected my physical health, but also because of what I had gone through in the last month I couldn’t foresee doing the same for the next 18 months while I go through the appeal and tribunal process. I wanted to end my life.

It has left me unwilling to deal with these agencies but I intend to follow my case through to tribunal for an independent body to review my application and circumstances. I still face a long and hard fight to receive my correct entitlement, while also having to battle through non-curable physical health and worsening mental health.

As I look around my city and peer group it’s not something I can see improving any time soon, because despite having the systems and ability to share information, employees are using them in a completely different way to other services. If staff aren’t trained properly or do any cross agency work, then unless they use the same system in the same way, it’s doomed to fail.

It’s not something that should be happening after all the work that’s been done and the money that’s been spent over the last decade to set up these systems. There was no reason for me to be under the threat of eviction.

Joining up access to housing and employment opportunities and specialist services for mental health and substance misuse, and then actually using the same systems in the same way, would make a massive difference when helping people like me to address their multiple complex needs.

Our correspondent’s name has been withheld to safeguard sensitive information

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