I am Charlotte, a 24-year-old disability and mental health activist in Bristol. As a young person living with both physical and mental illness, I have much experience using health services. I was referred to Child and Adolescent Mental Health Services (CAMHS) when I was 17 after a long period struggling with depression, anxiety and anorexia.
Despite the fact that I was the one living with these illnesses and receiving treatment, my opinions were never considered during my time under CAMHS. I was not involved in decisions and was completely dictated to. It was as if my views were invalid - I felt more like a bag of symptoms than a human being. This made me despondent and non-compliant. Having the space to weigh up even the smallest of choices would have made me feel like I had some control at a time when a lot was being taken away from me. Shared and informed decision making is so important for empowering young people – it improves patient experience and cooperation.
Talking to other young people, I heard the same story again and again – we are not being involved in the choices regarding our treatment, our lives. Frankly, this baffled me. I wanted to ensure that young people were being empowered and involved in their treatment plans. Through drawing on my experience I aimed to produce something that would benefit others, and so I became involved with the Power Up project led by Anna Freud National Centre for Children and Families.
Power Up is an app that offers a set of tools to help young people communicate their thoughts, feelings and opinions. You can record appointments, store plans, weigh up decisions, and flag questions. The aim of Power Up is to ensure that young people can take control of their own care. During CAMHS I had trouble keeping track of appointments, symptoms and plans. Having somewhere to record agreed plans would have put my mind at rest and made me feel more in control of my treatment.
Frequently I had questions that I would forget to ask during appointments, only to frustratingly remember them when I got home. Having a dedicated tool to flag points for discussion at specific appointments would have meant I always got the information I needed for recovery. I also feel that I made some poorly informed choices in CAMHS. I didn’t have a space to sit down and really consider how choices would affect me. Having the app would have encouraged me to speak up and advocate for my opinions to be considered.
I believe Power Up can be used to improve CAMHS patient experience. It puts organisation, decision-making and treatment tracking back into the hands of the young person. This is crucial during CAMHS treatment as we can feel out of control of the situation, as if our voices are not heard or that our views are unimportant. Having a space to track treatment and outcomes, weigh up choices (however small they may be) and collate helpful resources would have really benefitted and empowered me. I could have got more out of my treatment and made informed decisions, being more aware of my progress ad options.
We have developed a Power Up prototype and will be interviewing young people, carers and clinicians in CAMHS for detailed feedback on their views of the app. We will also be testing it out with young people in a small number of services. Our aim is to refine the app to ensure it meets the needs of young people accessing CAMHS so we can then plan a larger study to make sure we have rigorous evidence and Power Up is as empowering as possible for youn