Participants Not Patients

My name is Maisy and I am 19-years-old. For the last year I have been a part time Young Adviser for Anna Freud National Centre for Children and Families and am also on the participation steering group, working to try and ensure that children and young people have a say in the mental health care they receive.

To give some weepy context to my life, I spent too many of my teenage years locked into a pattern of many months in hospitals and with crisis teams, passed cautiously between clinicians as a result of serious post-traumatic stress disorder and obsessive compulsive disorder which I've had since childhood. I can remember vividly just how afraid I was about finally getting the help I knew I needed. In the end it turned out OK; I am slowly becoming a little more like the person I actually want to be.

Having said this, my experiences of services and therapy were far from perfect and there are things that I would change. Child and Adolescent Mental Health Services (CAMHS) have a long way to go if they are to help as many young people and families as possible. The world as a whole has miles further to go in terms of accepting young peoples' mental health needs as a priority and knowing what to do if a child needs help.

To me, participation means that I can be more than just a patient: I can actively contribute and make the changes to services that I want to see happen.

When I first applied to be involved at the Anna Freud National Centre, I was curious but sceptical. I never thought I'd be able to survive a job interview, let alone be hired. I also harbored a chronic mistrust of clinicians and other adults and was suspicious as my perceptions were marred by negative experiences. However, being involved with the participation steering group has given me opportunities to transform my bad experiences into good.

Whenever I have seen opportunities to make change, I have seized them. So far, participation has given me the opportunity to advise real life clinicians how to relate to and work with young people for the best possible outcomes. Much of the advice I give to clinicians is along the lines of not being afraid to ask young people for feedback about how things are going and to think of creative ways to deal with difficulties that arise. Obviously, all young people are different, but most, if not all, want to be involved in some way and it is their right to be listened to! After all, according to Article 12 of the UN Convention on the Rights of the Child, "Every child has the right to have a say in all matters affecting them, and to have their views taken seriously."

I have collaborated with researchers, promoted participation in CAMHS services all across the South East and delivered a presentation alongside the Mayor of Camden, Councillor Nadia Shah who has chosen the Centre as her named charity during her year in office. A particular highlight are the two podcasts in the Child in Mind series hosted by BBC's Claudia Hammond I featured in. The first one, which focuses on therapy, goes live today. You can listen to it on the Centre's iTunes or SoundCloud channels.

Participation has also helped me a lot in my personal life. I have made some amazing friends, many of whom have similar experiences to me. My newfound confidence has seeped into every opportunity and relationship I have. My mum has noticed the change in me: I speak confidently and assertively, I question everything and rant about the benefits of participation to everyone I meet. I've returned to full time education and started university. My future no longer seems so bleak.

The first step in getting the help you need is the hardest to take - but I promise that it is worth it. Clinicians are becoming much more open to the voices and opinions of young people. I urge other young people to get involved and to participate in shaping the services they receive - because a service is only as good as the experiences of the people who use it.


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