Striving for hope

I first met Rafik (who I call Raf) during a comprehensive inspection with the CQC in Wembley, London. We had never met before and he shared with me that he had not long left mental health services. I remember him being quite quiet and somewhat reserved, only asking questions that were necessary for him to gain an understanding about the work he was about to undertake.

At the time, Raf was dressed in a black suit and wearing black shoes which had seen better days. But I could tell from the way he talked, and by the questions he asked, he had the potential to help bring change to the way people were cared for within mental health services.

I introduced him to a few other experts by experience and we shared some of our journey with each other. After a few hours of talking, we quickly gained an understanding of each other’s past lives and found a mutual respect for one another.

Being older, and a bit more mature, I decided to talk to Raf about his future. I explained that right now he had some important choices to make. The first being, what did he want to do with his life? I continued to explain that he could go back to the lifestyle he was living beforehand, and face uncertainty, or he could grasp this opportunity with both hands and make the most of it. We know from his blog posts on this very site which path he chose, and I’m very pleased he did.

Shortly after Raf became involved with Cygnet Healthcare, he invited me to to attend a few meetings and introduced me to some of the senior management team. Not long afterwards I found myself assisting with a few things and quickly discovered that all the experience I had could be put to good use, especially since I wasn’t able to utilise my full potential with the CQC as it was their policy that we couldn’t advise any of the services.

Overcoming my own mental health issues has been an uphill struggle. I found the support and care I needed to be lacking. What did help was finding a few individuals who really cared about people that were using these services. I was fortunate to have access to one nurse who wouldn’t give up on me and looked out for my needs in every way possible. Hence the reason I’m here today to share my experience.

On the other hand, there were professionals who didn’t care enough about the people they should have been supporting and I must admit this made my journey even more difficult. When you have doctors that are trying to section you for no real reason other than what has been fed back by staff that didn’t really care about you to begin with, doesn’t help. To think that they never cared enough about what would happen to my life or how it would affect my children and wife made this tough. Luckily, I watched as that one nurse put themselves on the line to challenge the decisions the doctor was about to make in my case, and ensured that I got the right medication.

This particular nurse had shared with me their experience of seeing black people being treated differently and how too many were under section in mental health services through a lack of understanding about their cultures. They said they could see that I had much to lose and that being admitted to hospital wouldn’t be the best thing for me or my family. I’m glad I had someone who truly cared because at the time I didn’t really have it in me to care about what happened to me.

I was suicidal and I had had enough of my miserable existence. All that I had been taught throughout my life, I felt, was a lie and a great deception. Maybe, if I was white, my life may have been different, but who knows. I did all the things I was supposed to do. The things that society expected me to do, which included working hard, educating myself, settling down and raising a family. But the rewards for my efforts fell short.

I soon realised that the opportunities which were available for others were not equally available to people of my complexion. This was very hard for me to accept as it wasn’t only opportunities that were problematic, it was also the way in which I was treated and how people would make assumptions about me based on my skin colour. I wasn’t the right colour, nor would I be treated equally or respected for my skills as my white counterparts. As a result, I gave up on life. I didn’t see the point in carrying on. I became a victim of society, even after trying to do the right thing in life. I was broken, with no hope.

The same nurse continued to support me, even after leaving the care of the service, and I was handed back into the care of my GP. That same nurse even supported me to build my own business. They supported me to do the things I wanted to do in life, and they ended up being my first customer. Before long I became involved with Choice Support and the CQC, which brought new hope into my life, and gave me even more purpose to continue on my journey.

Today, I work for Cygnet as an expert by experience and work closely with Raf, helping to shape the future of health care being received by hundreds of patients across the country. It can be tough at times, but the rewards of seeing patients progress and getting their lives back is what keeps me going.

What I have shared with you is just a brief insight into my experiences. The message I want to leave you with is to have hope. Find what makes you happy in life and hold onto that. Give with a cheerful heart. Offer kind words or a helpful hand as its never easy going through things alone, but with the right support, it can make a huge difference to someone’s life.

About the Author



Dwayne Smith, 38, is an expert by experience for Cygnet Healthcare. Dwayne has been a service user and a carer in general and mental health settings. His role at Cygnet is to work alongside the expert by experience lead and executive board of directors to support and improve service user involvement, co-production and patient experience structures on both strategic and local levels. In 2018, he was given the Cygnet Healthcare Expert by Experience Award in recognition for his contribution. He has participated in over 200 Care Quality Commission inspections and was previously involved in providing feedback regarding the state of mental health care services to the Department of Health. Dwayne is also a qualified IT Professional with over 20 years’ experience, who uses his skills and experience to aid with the improvement of mental health care, wherever possible. He has also completed a Co-Creation Welfare course, backed by Erasmus+ Funding and delivered by Coventry University. Dwayne is also the founding member of Vivid Clouds Limited, a company set up during his time using mental health services. He spends most of his time focusing on improving mental health care through co-production.