You are here: Shaping health in justice with lived experience involvement

My lengthy journey through the criminal justice system, and the years I’ve spent in prison trying to get it right, is not an untypical one. I’m pleased to say that I finally did get it right. However, for several years, it was more a case of survival techniques. Techniques not picked up through counselling or therapy, but picked up through listening, observing, and replicating the behaviour of my peers.

The case for early intervention

I fell into the school to prison pipeline when I was permanently excluded from the education system at the age of 14. Then, in 1985, I was only 15 and I entered custody for the first of many times. At the time, it was known as detention centre or “short, sharp, shock” It didn’t work for me. My ninth and final prison sentence ended on the June 9th, 2017.

What we know now through research, evidence and lived experience wasn’t known as much during my childhood years. There was no one to talk to about the sexual abuse I survived as a young boy of 8.

Then at the age of 10, following a period in hospital for meningitis, the wheels came off. The ‘challenging and disruptive behaviour’ I was exhibiting wasn’t because I was naughty or bad, it was because I was suffering with no other release available to me. However, rather than sit me down and ask me what was going on in my life I was continually asked “what the hell is wrong with you?” How was I supposed to know what was wrong with me? I knew what had happened to me at the same time as being deeply confused about it. I was only a child, not a child-psychologist. I had one of those too, he didn’t seem that bothered about what had been happening to me, all I remember are tests, tests, and more tests. There were a few questions, test questions, but I don’t ever remember being asked if I was alright.

My point is to highlight the importance of early intervention and asking the right questions at the right time. And not just early intervention regarding during childhood but also for young adults, adults and older generations.

Addressing unmet health needs

In 2010, I began to understand myself a little better. After being diagnosed with a number of personality disorders, I was furnished not with excuses but with reasons as to why I was who I was. I finally had something tangible I could begin to work on and fix.

Would you attempt to build a motor engine without the instructions to hand? If you have the right instructions then you don’t necessarily need a mechanic to do the work, you can build it yourself. This is similar to a GP who needs to ask the right questions in order to find out the symptoms and therefore prescribe the right medicine. However, trauma is not an isolated reason for becoming trapped in the revolving door of crisis and crime. It’s not as simple as cause and effect.

Over the years, I noticed people in prison who clearly have underlying issues being undiagnosed or missed due to the lack of awareness. Neurodivergent conditions, especially ADHD, Autism, and Dyslexia, are very much prevalent undiagnosed conditions across the prison estates. Dementia was already an issue and with an ageing prison population and it is one that will continue to be so.

In September 2019, Clare Hughes who is the Criminal Justice Manager at the National Autistic Society (NAS) discussed in an article published on the NAS website how autism accredited prisons and probation services support autistic people. Clare had previously written about the NAS’s work with HMYOI Feltham in developing Autism Accreditation standards for prisons. Clare also discussed a pilot to test these standards in HMYOI Feltham and HMP Parc, Wakefield and Dovegate. HMP’s Parc and Wakefield are now accredited, and HMYOI Feltham maintained its accredited status.

In England and Wales we have 117 prisons, and yet the list above amounts to only 4 out of the 117. As yet, I am not aware of any prison with a designated dementia friendly environment.

Undiagnosed or unmet health needs regarding neurodiversity, or environments with a lack of awareness of neurodivergent conditions, can be extremely detrimental to the individual. Especially those trapped in the revolving door of prison who are attempting to rehabilitate and progress through their sentence but are unable to due to their undiagnosed condition, or unmet health needs, which could be seen as ‘challenging and disruptive’ behaviour.

It is time to build a platform from which we view those within our prisons from a healthcare perspective, where we can work to meet their needs rather than just managing risk.

Shaping the system using lived experience involvement

When taking my own decision to turn my back on crime I needed a new purpose - a ‘what can be’ rather than a ‘what was’. I found that my purpose was to utilise my lived experience to push for the changes I believe are needed.

I am now a member of the lived experience team (LET) at Revolving Doors Agency. Together we work with partners to change systems and improve services for individuals with multiple needs and poor mental health who are in repeat contact with the criminal justice system.

The LET also works with NHS England’s Health and Justice national team to assist in the creation, design, and implementation of healthcare services across the secure estate in England.

Our ambition is that anyone experiencing the revolving door of crisis and crime receives effective support to reach their potential, with fewer victims of crime and safer communities as a result.

I have had a long journey which has provided me with many a story to tell and because of the incredible work we do at Revolving Doors, I am able to share and help turn my past negative experiences into positives by using them to help others.

Changing health in justice

Revolving Doors have been working with NHS England to pioneer a different way of doing things. A way the puts lived experience at the heart of decision making and service design. Read about how we’re changing the world (one step at a time).