This group formed after working alongside staff to develop a new crisis service business case to put forward to commissioners. This service was commissioned and is now a functioning service covering Leicester, Leicestershire and Rutland. The group then formed Evolving minds who collaboratively work alongside staff in co-designing improvements to services. The group of young people often lead on various projects and have developed content for our Health for Teens website, made changes to letters that are sent from CAMHS to service users, made changes to access assessment forms etc.
What We Did
My role started as a pilot project as a service user co-design coordinator and I work across families and children services. A big project I have been involved in was involving CAMHS service users and parents, carers in co-designing a crisis service alongside CAMHS staff. My role was to facilitate this. The young people worked with CAMHS to design a crisis proposal, and get it commissioned and enhanced. This service was launched in April 2017. As part of this one of the youngsters produced a film about their experience of being in crisis and this is now being used as a training aid in Leicester A&E department.
The young people wanted to remain involved and then formed Evolving Minds group which meet monthly and we also have a virtual group where young people get involved from the comfort of their smart phone.
The main achievement of the group is being involved in shaping the crisis service and getting the service commissioned with their voices being central to the business case put forward. One of the young people developed a patient story film of her experiences of being in crisis and this is now being used as a training aid in a local A&E department. Since then the group have been involved lots of activities from changing letters that CAMHS send out to service users, and changes to the forms used in initial access assessments – this is what the evolving minds group call ‘youth proofing’. Some of the young people have been trained in recruitment and helped to develop the activities for the recruitment and ways of capturing the interaction between the young people and the person being recruited, and some of them have been on recruitment panels to recruit new CAMHS staff.
They have developed content for our Health for Teens website around mental health, emotions, and other health related topics. They have also helped to design a resilience film which is live on the website. The group also help to reach out to other young people across Leicester, Leicestershire and Rutland and have looked at digital platforms to do this, eg through Twitter and Facebook groups,
Wider Active Support
We have developed many partnerships over the past 12 months, particularly with targeted groups through youth work and local authorities eg Youth offending, young carers, LGBT etc and they have been supporting us to get the group details out to other young people. We also send consultation work to these groups for their voice contribution too.
School nurses have referred young people onto our group via schools and parents.
CAMHs and Evolving Minds work closely together and staff regularly attend there meetings in order to move projects forward or to feedback to the group – you said we did.
Local authority childrens centres support the venues for the meetings, and offer us a room to use out of hours where a cleaner adjusts there hours in order to lock up for us – this is the only free suitable venue we could find as we have had no budget for this work.
The CAMHS crisis service was very much co-designed with CAMHS staff and the young people now part of the Evolving Minds group. This service was launched in April 2017 and we got additional funding due to the voice of young people being central to the proposal. The young people have volunteered to be part of the evaluations in 6-months time too, using peer to peer methods for young people that have accessed it to feedback.
Staff that have been recruited to the crisis service have been interviewed by staff and young people and recruited based on mutual discussions.
The health for teens website has mental health content which has been co-designed with young people and professionals.
Looking Back/Challenges Faced
Governance procedures were tricky when first setting up the group and looking at risks around involving vulnerable young people. In hindsight I wish I had of looked for examples of good practice and see how other trusts worked with governance and kept everyone happy.
Some staff found working with young people problematic as they see comments as personal, and some young people struggled to work with staff due to the possibility of having to work with their therapist.
We now have sessions where I take the information young people provide back to staff and I essentially act as the middle person. We very much work on choice and young people can get involved with as little or as much as they want. We maintain contact through emails and social media accounts which was the way young people wanted to do things.
The idea was for the group to become sustainable and I step away and there would be a main contact within CAMHS. Although we have champions within CAMHS who regularly work with the group and promote the group to other young people I have failed to persuade someone to take on the responsibility of the group. Clinical staff feel that they do not have enough time to commit to the group.
I sometimes struggle with capacity and therefore 2 of my older members of the group have started to lead on some of the sessions so that I am not always present at the group.
Evaluation (Peer or Academic)
We now have a crisis service which is live whereas previously we did not.
Young people are now actively involved with contributing to communication and leaflets that go out to children and young people which previously did not happen.
We have young people on recruitment panels which previously did not happen within CAMHS.
Our health for Teens website has all been co-designed and is an award winning website.
The Evolving Minds group has grown in size, to 24 members who meet face to face and also work virtually.
The group has volunteered over 100 hours and they have just won our Trusts celebrating excellence award for Volunteer of the year award.
The young people have also really grown in confidence, from initially not being able to look me in the eye to presenting to over 100 people. While battling with their own mental health issues they have shared personal and sensitive issues to tackle the stigma of mental health.
We now have a dedicated crisis team which takes some pressure of the CAMHS team for dealing with young people in crisis.
Young people have clearer correspondence which is more young people friendly and more understandable.
Young people have another clear route to be able to feedback about the service they have accessed in CAMHS.
Staff have a clear route to be able to access young people to involve them in various projects.
The group have helped co-design the crisis service which has been designed around young peoples voices and this is a service which will be used by other young people across Leicester. They have helped to develop content for the Health for teens website which is young people friendly and we know that other young people should understand this. The group have presented several times in front of commissioners, service managers and others to give context to a subject and to share their personal experiences so that people can learn from it.
The group has been active for 2 years and has gave up over 200 hours volunteering their own time to improve mental health services for young people and to reach out to other young people.
The group have also supported each other and have developed close friendships and they have learnt that they are not alone in their experiences and they have felt the benefit of sharing their stories with each other.
I share the work the group does regularly with the wider CAMHS team and report through our patient experience pathways.
Is there any other information you would like to add?
The group have not only youth proofed services, and content for the health for teens website, helped to design a crisis service, and taken part on recruitment panels they have also grown themselves in confidence and empowerment. I am extremely proud of these young people who have came out of the other side of their journeys and are now really positive about the future. One young member was previously an inpatient and is now a young adult who has worked alongside CAMHS and co-design to improve services by speaking about their experiences. They are now very positive about their future and training to be an engineer. Another young person had attempted suicide several times and is immensely proud of their involvement in the development of the crisis service, and their film which is being used as training, they are now just starting an Art course at university as they wish to pursue a career in art therapy. These young people have given so much of their time and knowledge of their experiences in order to better improve services for other young people in their local areas.