Expert by Experience: Rafik's Story
Digital team's blog
Rafik became involved in gang culture in his adolescence. Aged 18 he received a prison sentence and it was here that he received a diagnosis of personality disorder, and was transferred to a secure care hospital. In this setting he found the advice and support he received from Rethink Mental Illness advocacy service and publications instrumental in his recovery. Since leaving hospital, Rafik has become an Expert by Experience for the Care Quality Commission, taking part in hundreds of inspections of services. Rafik says:
Aged 13 I was diagnosed with Asperger’s Syndrome and additionally, around this time, I was also diagnosed as having conduct disorder. Both these diagnoses affected my behaviour, and I struggled at school, being expelled numerous times before being place in a specialist school. I never felt like I ‘fitted’ in, and aged 15 I had left school without any qualifications.
During this time I became involved in a gang culture. On the one hand, this was somewhere I could ‘socialise’ and belong – without the routine of education. However, the associated antisocial behaviour surrounding this lifestyle definitely negatively impacted on my mental health.
Aged 15, on a whim, I followed a friend to New York, and my lifestyle followed me. I got involved in different gangs and became homeless. Back in the UK, when I was 18 I was wrongfully accused of a crime related to my association with a gang. I spent a year on remand in a young offenders’ unit, awaiting trial. After being acquitted, I was sentenced for other unrelated offences linked to my former lifestyle and detained in prison.
During the trial, the Judge the failed to request a full psychiatric report pre-sentence despite it being asked for. My legal team, my family, numerous medical/legal professionals felt that I was failed during this process, and this had a knock-on effect for my time / experience in prison.
My behaviour in prison was challenging, and consequently I was moved to different prisons across the country. I spent a year in solitary confinement, which I can only describe as torture. After a lengthy process of assessments and referrals, which were disrupted each time I was moved, aged 19, I received a diagnosis of personality disorder. I was transferred to a secure care hospital and spent the rest of my sentence in NHS Forensic unit and specialist personality disorder unit.
Throughout my period in hospital, organisations such as Rethink Mental Illness played a pivotal role in providing extra independent support through publications and advocacy in ensuring that I had enough information about my treatment and rights and helping me to articulate any concerns I had. I felt truly able to have genuine conversations with my Rethink advocate, and it was this support and guidance that made a massive impact on my behaviour. I also know that my family found online resources and information available on the Rethink Mental Illness website extremely helpful. I have also found support in being able to read about others with similar experiences through Rethink Mental Illness blog posts.
Being discharged, I was faced with the challenge of reintegrating into the community. In this context, I had to review what I was going to do with my life and I started by looking at my strengths. When in hospital I’d spent time helping others around me. I’d been ward representative and Chair of the service user forum. Someone suggested I apply to become an Expert by Experience with the Care Quality Commission. The Care Quality Commission is the regulator for all types of hospitals, general practice and care homes.
Experts by Experience are people who have used (or still are using) services. They form part of the CQC inspection team and primarily focus on speaking to the people who use the service.
I felt doubtful that someone with a forensic history like mine would be able to get a job. But I applied, and was successful. Perhaps for the first time, I felt valued.
I have now lost count of the amount of inspections I’ve taken part in. It’s widely accepted that Experts by Experience are best placed to get accurate information about services from the
people who use them, but the role also breaks down barriers, gives people opportunities and can give service users hope when they see someone who has been in a similar situation to them, who has literally been on both sides of the fence, now coping well within the community.
Being an Expert by Experience has changed my outlook, particularly around mental health. I certainly feel being an Expert by Experience has taken away the ‘us and them’ mentality I used to have in relation to staff in general as I have seen first hand examples of real, good quality, compassionate care around the country.
Aside from inspections, I have also helped to train new CQC inspectors, and appeared on CQC videos. I’ve advised on the roll-out of an Experts by Experience programme in Holland, and I’ve been a judge for the Third Sector Care Awards. I have recently been accepted onto a National Institute for Clinical and Health Excellence (NICE) guideline committee as a committee member based in the Social Care Institute for Excellence.
I also continue to volunteer with gang members and ex-offenders through my video production company. These vulnerable groups of people tend to have a high prevalence of mental health problems, but the stigma can be a particularly tough barrier for them seeking any help. This environment provides them with a space to use their creativity through music and videography not only to get off the streets, but also learning skills to support access to education or employment.
My employer and my support organisation do not cease in continuing to surprise me on how engaging, accepting and involving they are and both organisations have been key to my rehabilitation and reintegration into the community, helping me to finally lead a pro-social lifestyle and be a better person all whilst helping others at the same time.