Embedding children and young people’s participation in health services and research – UCLan seminar May 2014

Last month I was invited, along with Dan Moxon from People, Dialogue and Change, to present at a one of the regular seminars organised by the UCLan Centre for Children and Young People’s Participation.

The seminar was on children and young people’s participation in health services and research (see flyer:12 May Louca Mai Dan Moxon POSTER). Both Dan and I discussed the work we’re doing in this area and, although a select audience, then had some really interesting discussions with those who attended. The recording of the event can be found here.

In my presentation I explored emerging findings from my research on what it means ‘embed’ children and young people’s participation in health services and research, including reflecting on learning from workshops in July and October last year:

Dan then went on to discuss some of the great work he’s doing in this area:

The discussions that followed raised some really interesting issues, which will inform the next phase of this work. Many thanks to Nigel Thomas and UCLan for hosting. It also very much like the start of a conversation, which you’re very welcome to join via this blog if you couldn’t make it on the day.

Good participation in health services – a young person’s perspective

As this blog is all about children and young people’s participation, another contribution from a young person was well overdue. The post below was written by Felicity, a young woman I’ve been working with at the Community Children’s Health Partnership in Bristol, as part of the research we’re doing together on embedding children and young people’s participation in health services and research. The post needs no further introduction – other than to say that this is why children and young people’s participation in health services matters…

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The Community Children’s Health Partnership is a partnership between Children’s Services in North Bristol Trust and a Barnardo’s Project called HYPE (Helping Young People Engage).

As a young person that has been involved with CCHP for nearly five years (and CAMHS for seven years), I jumped at the chance to become involved in developing the new ‘Participation Strategy’. Over the last six months I have been working with seven other young people. Collectively, we have experience of ten different services within CCHP and as a result, we know first-hand that there is a lot of great participation happening but also that the journey is not complete.

We wanted to be involved in developing the strategy to help embed participation on every level across the partnership. Drawing up this strategy gives participation the same importance as any other policy and provides a standard and formal tool for professionals to measure their performance against.

We met on several occasions with staff from CCHP. This partnership seemed to ignite a lot of enthusiasm and discussion. We tried to use creativity in our meetings, which was somewhat novel for some of the staff, but really facilitated expression and cohesion. By the end of our meetings I really felt as though we were an equal group and that there was no disparity between YP and staff. The one thing that is really poignant in my memory is the word collaboration. I left feeling really hopeful that this collaboration was definitely the way forward and the thing that was going to make this strategy authentic and meaningful. It would be a pretty hypocritical participation strategy if it was written without any participation from the Young People!

Now the strategy is written, the next step is to work together to make this strategy come alive, be truly meaningful and become more than words on paper. How do we communicate to YP what they can expect from good health care and what ‘good’ looks like in practice? The challenge now is how CCHP make the strategy really mean something to children, young people and their families.

As a group of Young People, we have some ideas about what we would like to do next. YP cannot hold staff to account when they have no idea of what they should be expecting in terms of good participation. We want to work on translating the strategy in to something that is accessible to all young people, their families and carers. We hope that there might be some scope to work with a graphic designer to produce a poster and leaflets that can be distributed around waiting rooms. We are also looking into the possibility of producing a film.

When good participation happens, both parties learn and gain from each other in equal measure. I’ve learnt new skills, regained the confidence and purpose that my mental illness had unceremoniously stolen and gained voluntary experience that has helped in applying for jobs and university. This work has revealed my passions and convictions, allowing me to carve out some direction in my life.

I would hope that the professionals have learnt something from us too!

As well as the strategy, another young person and I worked with Barnardo’s to produce a film of our participation journey. The past few years of our lives have been quite a difficult journey. We both agree that a big part of the progress we have made can be attributed to the participation we have been involved in. We made the film to convey the impact and difference good participation makes to individuals on a more personal level. For me, making this film was kind of like a closing chapter as I try and make the leap from having the identity of a service user to that of a recovered student/professional with lived experience. I’ve been inspired to choose a career in the NHS from the work I have seen and done in CCHP. Our film tells the story of participation, recovery and friendship:

In May the CCHP had a visit from Kath Evans, National Head of Patient Experience for Children and Young People. We were delighted to be able to present the Participation Strategy and our film to her. I don’t think I have ever met someone so enthusiastic and passionate about championing the voice of Young People. It is very reassuring to know that people like her are in charge and such a privilege to share the work we’ve been doing with her. We have even been invited to show our film at an event in London in a few months time.
I truly owe a lot of my recovery from mental health problems to the things I’ve been involved in with CCHP. It’s really exciting to see the progress we’ve already made and I can’t wait to see what the future holds.

Felicity Hathway