Recently three of us from the NIHR funded-project, ‘Improving the mental health of children and young people with long-term conditions: Linked evidence syntheses’ attended the INVOLVE conference to share our results.  The team was represented by one researcher (the patient and public involvement (PPI) lead on the project, Dr Erin Walker), and two young people who were involved in the work (Katie Hughes and Summer Teale.

We were very impressed with how much discussion there was about young people getting involved in research, although you don’t have to tell us twice about how valuable it is, we knew that from experience. The conference was kicked off by a member of the London Young Persons Advisory Group, Laila Xu and a service user-researcher Simon Stones co-presenting in the opening plenary session, sharing their experiences of involvement.

We three were all keen to hear from Sophie Ainsworth about her efforts, based on personal experience, of improving education for children and young people with chronic invisible illness, through the RAiISE (Raising Awareness of Invisible Illness in Schools & Education) project @raiiseuk.  We left her talk feeling sympathetic to, and frustrated for, every child or young person who has experienced the problems she described.  Coming up against attendance targets in schools as a child or young person with an invisible illness can be damaging and distressing for the child and family.  Targets are artificial and hold no meaning to a young person who experiences crippling fatigue or chronic pain, which is the experience of some of the young people we involved in this research project.  We will certainly be keeping a close eye on Sophie and her team’s work on the RAiISE project.

We had a poster and an oral presentation on how we involved eight children and young people in an evidence synthesis on interventions to improve the mental health of children and young people with long-term physical conditions (#tlc4ltc).  This was a very big topic, and we involved children and young people with primarily rheumatological or neurological conditions, and co-morbid mental health problems to help throughout the project.   This was the first time we’ve involved children and young people in evidence synthesis work, or co-presented with young people, and I think we were all curious to see how it would go!

summer poster

However, despite Erin, Katie and Summer all feeling nervous at the conference, it was an excellent experience and there was some great discussion after our presentation.  As Katie explained,

I really enjoyed going to the INVOLVE conference because it was a brand new experience for me and I’ve never been to anything like that before. I was really surprised by how many people were there at the conference and how many people were interested in health research. I really enjoyed listening to the presentation about raising awareness for invisible illnesses in schools because I have an invisible illness myself, so it was good to listen to a presentation where I could relate to what the presenter was saying. I felt really nervous about presenting, but I was really pleased with how it went because we all dealt with the questions really well and I was really surprised about how well I answered them.”

Summer also rated the experience highly, as she described:

First of all I would like to say I absolutely loved the conference, I listened to some amazing people speak and also got to speak myself about things that mean a lot to me. I really liked the one about invisible illness in schools by Sophie Ainsworth as I could relate a lot with everything she said and I found it very interesting. Our poster was very good and it was nice when everyone was coming over and asking about it so we could tell them about the research that we did. What I thought was also really good was the bag they gave us with the booklet that told us all about the day and timetable, also there was a certificate at the back saying that you went to the conference which is nice to remember it by. My favourite thing about the day was of course us doing our presentation because I was speaking about something so important to me to lots of other people who could find out more about it or relate to it. It went really really well and at the end when we had questions I was so worried that I wouldn’t be able to answer them and they would be really tricky. I couldn’t believe the response we got from everyone, mostly we didn’t get questions people were just commenting on our presentation (in a really good way). We did have some questions aimed directly at us (me and Katie) but we both answered them really well. There was also one about how we would have felt if our mums were in the room with us and I said I wouldn’t care as I can tell my mum everything which made my mum cry as she was sitting at the back watching. Mostly I want to thank Erin for letting me do this amazing experience and being involved in the research and will definitely continue to do these things.”

It was certainly a unique experience for all of us, and a brilliant day.  Now, on to co-producing the paper with our young people – stay tuned for more!