Lived Experience Matters
In this blog I’ve been grappling with some issues I feel very strongly about. I’ve had to re-read it several times to check the extent of my bias. I will, somewhat naturally, always be biased in relation to the extent to which lived experience involvement matters when responding to social issues. What I have challenged myself to do is to also be fair. In this blog I refer to many things which I have found horrifying in how our systems and public services have responded to social issues. It would have been easy to write these truths in a way which appeared too much like a hit piece. I have tried to make sure the overall tone is fair to most professionals who come into a career because they want to help people. They should be appreciated and valued, but I think it is also important to work towards an enhanced understanding of where the failings still lie. However many times we refer to ‘trauma informed approaches’ and ‘recovery models’ we need to be honest that services which re-traumatise, other and seek to manage people’s risk and conditions without fundamentally believing in their ability to change are still much closer to being the rule rather than the exception.
In 2012 I became an employee of Greater Manchester Probation Trust. As someone with lived experience of the criminal justice system as an ‘offender’, as well as substance abuse and mental health issues, I sometimes felt I’d infiltrated the institutions which make up our ‘justice’ system, namely: HMPPS (Her Majesties Prisons and Probation Service), HMCTS (Her Majesty’s Courts and Tribunals Service) and the police. During my career on ‘the other side’, so to speak, I also got to see the inner workings of substance abuse services, pharmacies, various supported accommodation projects and mental health services.
It soon became clear to me that many of our public services had huge blind spots. All too often it was the case that they were designed and managed by people who had misconceptions about the real nature, and root causes, of the social issues they were dealing with. Plenty of people I worked with had genuine empathy, competence and valuable ‘learned’ experience. Unfortunately, I also encountered many people who didn’t have these qualities. Below are just a handful of quotes which highlight the attitudes and cultures which are allowed to persist, often unchallenged, within our public services:
Magistrates Court employee: “I’ll tell you the worst thing Tony Blair ever did was to get the police more involved in Domestic Abuse cases. These women can never make up their mind, one day they want to prosecute and the next they don’t, they waste so much of our time”
Policeman 1: “Why would we waste time investigating scum on scum crime?”
Policeman 2: “Why are we sat around chatting shit to people we should be locking up?”
Pharmacist: “I never thought I’d have anything remotely in common with someone who has used Methadone”
Probation Operations Manager: (To a group of 18–25 year olds who asked her what the point of probation was) “We teach you the skills you need to make good decisions and make a better life”
CBT Therapist: (on being informed by a worker with lived experience how her very formal and clinical communication was impacting on someone recently released from prison) “I think you’ll find I’m a lot more experienced in speaking to trauma victims then you”
Too often the perspectives of people working in our public services fail to take into account the narratives of people with lived experience. In what world do cultures develop where members of the police force thought it acceptable to refer to victims of sexual exploitation as ‘child prostitutes’?
When I was at an event about “Transforming Rehabilitation” a senior member of staff from the Ministry of Justice was asked whether anyone with lived experience had been consulted in plans for the privatisation of probation services. He looked somewhat incredulous “The most senior and experienced members of staff and most reputable academics have been involved”. The implication being that individuals who were once in the Criminal Justice System and have now come out the other side could add nothing to enhance the understanding of the senior managers who had designed institutions which often produced re-offending rates upwards of 50%, with a national average of 47% of people leaving prison re-offending within a year of their release.
I once saw an academic presentation which claimed “Offenders leaving custody are poor at accessing services in the community”. In the private sector no-one would be able to get away with saying “customers are just really poor at buying our product”, they would have to sit and listen and understand the experience of making the transition from custody to the community and what makes it so difficult. They would have to adapt their product accordingly in order to make it accessible. Yet way too often we either ignore, or massively undervalue, the people who most understand what makes so called ‘through the gate’ provision accessible and workable. The people who’ve managed to access the right support and to re-settle in the community.
Circa 2006, the then regional manager of the now defunct National Treatment Agency was known to advocate giving Heroin users ‘A bucket of methadone and a straw’, quality of life and recovery were viewed as either unreachable, unworkable or possibly even undesirable by the NTA. In the eyes of those who decided what outcomes substance abuse services should be measured against, the mantra was to give people more and more prescription methadone until they eventually stopped using illegal drugs. It is hard not to find it scandalous that someone in his position would completely ignore the wealth and breadth of evidence around ‘natural recovery’, where former opiate addicts have articulated how they have found abstinence through the creation of new interests, social networks, and social identities. Why did it take us so long for us to give a shit about them? Eventually policymakers started to listen to people in recovery and what had worked for them in achieving abstinence, and the concept of ‘recovery capital’ became mainstream. But there were plenty of studies from the early 1980’s on ‘natural recovery’, we just chose to ignore them in our policymaking. As for whether people who’d achieved abstinence were welcome outside academia? For way too long we, as recovering addicts, were told to come back in a few years time and maybe there would be a volunteer role for us.
A study conducted by Mind in 2002 found that 98% of people who went to their doctors to report feeling low or anxious were given medication. Less than 20% of people who got prescribed medication explicitly asked for it. As with addiction, too often the prevailing belief system was that of ‘chronic, relapsing conditions’ which could only be managed with medication. Rufus May, a clinical psychologist who was diagnosed with schizophrenia and who got well without medication explained some of the reasons for this in a 2008 interview with Fergal Keane:
“There’s huge investment by the pharmaceutical industry in this. They sponsor a lot of research and they won’t look at the kind of research that I think will be really interesting like how people like me recover. If you had HIV and there was a group of people doing really well, you’d want to look at them to see why they were doing well, what was different about them. But that hasn’t happened in mental health”
In the same interview, May goes on to talk about how the time constraints of professionals also play a hand in how little individual consideration you are afforded “if you’re a doctor, for example, on a big housing estate where you have people coming in to you every day, lots of people coming in every day with nervous complaints of one kind and another, you’re not going to have the time are you to sit down and make that personal investment, to ask them about their lives, the roots of their problems?”
The root of people’s problems are so often a combination of poverty, trauma, abuse and marginalisation. Yet way too often, no matter what led you to becoming homeless, an individual with substance abuse or mental health problems, someone in the criminal justice system or a victim of abuse, those charged with being able to help you get justice and/or with offering you care and support have immediately othered you. They will too often make snap judgements about who you are and what you need. Why? Because we’ve allowed cultures to develop where we’ve not asked the groups of people who are now doing well what worked for them?
We’ve not welcomed people with lived experience in as equals and sought to understand how we spread the approaches which worked for them to others. We’ve allowed our public services to become full of burned out workers attempting to crisis manage, and we’ve not had enough people with lived experience around to challenge negative perceptions.
If you are lucky these burned out staff will still believe you are worthy of being helped. Unfortunately, they often do so in the belief you are someone who is currently cognitively and/or morally deficient who needs someone from the ‘right thinking’ and ‘right living’ middle classes to come and rescue them. Assuming that the behaviours which work for them in altogether more polite and less deprived environments also apply to interactions on council estates and prisons (Enhanced Thinking Skills Programme anyone?).
In the world of substance abuse and mental health services your ‘help’ will too often be focussed on the medication the staff are most familiar and comfortable dispensing. If you are unlucky you will be met with someone who believes you brought every aspect of your suffering on yourself and you will be given the dreaded ‘intentionally homeless’ label.
As a system we fail to acknowledge the cumulative impact of dealing with staff that other you, that don’t believe you can change, that think of you either as a ‘headache’, someone who gets in the way of them being able to keep on top of their admin or as someone who ‘just doesn’t want it enough’ all whilst you continue to experience the extremes of poverty, trauma, abuse and alienation. The result is that your faith in your ability to access justice, to get your basic human rights met, is further diminished. You feel a sense of indebtedness to anyone who does give you the time of day and then panic at the thought of how and when you are going to lose that support.
At times there are reasons to feel more positive. We do have the introduction of some rights based services such as Housing First. There are definite moves towards more trauma informed practice, even though the learning isn’t spreading anywhere near as quickly as I’d like it to. On a policy and senior management level I tend to find people understand, to varying degrees, the concept of ACEs (Adverse Childhood Experiences). How much this has translated to frontline services is another matter.
Another reason to be positively optimistic, is our increased understanding of the role people with lived experience of trauma and marginalisation can have in creating spaces in which people can heal. These spaces are completely free from burned out workers who are tied to admin heavy databases and case management systems, of staff who once believed that what drug users need is a bucket and a straw or that ‘once you’re mad you’re always mad’. Spaces in which people can express themselves and their individuality completely free from stigma. Our evidence of the impact of spaces where the focus has been on everything from fitness, art, craftivism, drama, theatre, community reporting and storytelling to meditation and healing. Our collective challenge now is how to make sure the whole system recognises the value of these spaces as an essential part of an eco-system which believes people can and do get better. We need to ensure that the people who are holding these spaces are fairly recompensed and that they interact with the parts of the system which are prone to falling back into more toxic cultures where social issues are not fully understood and in which those who face them are othered, blamed and made to feel like they are a headache, an inconvenience or someone who doesn’t have a right to decide how they will be supported.