Living with an invisible illness – Part 3

By Liverpool YPAG,

Blog by Sophie Ainsworth

It’s been 7 months since my initial planning meeting with former Chair of Lupus UK, Jane Dunnage, and Dr Eve Smith when I pitched an idea I’d had about raising awareness of invisible illnesses in schools, following my negative experience. Sat in a small meeting room in the old Alder Hey building, I never imagined that the project would ever become so big and take off as quickly as it has. A month later, I met Jenny Preston (Patient and Public Involvement Manager for the NIHR Alder Hey Clinical Research Facility), whose hard work and passion for the project has been invaluable, and we organised a meeting with three other young people with different invisible illnesses to share our experiences.

Since then, the project has grown bigger and bigger and I couldn’t be more excited! At the beginning of the month (9th April) we hosted a workshop day at Alder Hey’s Institute in the Park. We invited a variety of people to the event: young people, parents, and education and health professionals. Approximately 30 people attended to take part in a variety of workshops in which we photo 1.JPG.discussed issues and past experiences young people have had in school because of their invisible illness and we were able to get the views of all the different people involved. The day involved looking at case study examples, discussing ways difficult situations could be resolved; sharing personal past experiences, thinking about what worked well and what extra support was needed; and how we will communicate the information and advice we have (see the full report here). For me though, the most exciting part of the day was spending time with the other young people where we came up with an official name and logo for the project. I am pleased to announce the name of the campaign is RAiISE, meaning Raising Awareness of (Invisible) Illness in Schools and Education. We were all really happy with the name and it’s connotations of empowering young people with invisible illnesses, which was one of our main ideas acquired from the day.  You can now follow us on Twitter @raiiseuk and Facebook Raiise

I also enjoyed attending my local Lupus UK AGM last week, where I met a lot of interesting people of all ages who told me about their experiences which were very similar to mine, whether they were in school 2 years ago or 20, which emphasised to me the necessity of this project.

I am very much looking forward to attending the Royal College of Paediatric and Child Health (RCPCH) conference this week. I am honoured that my abstract has been accepted for me to speak about my project among such a large and influential group of people, whose passion for their field of work and for the high quality care of young people is inspiring. I look forward being there.

I’m also really excited about the International Children’s Advisory Network (iCAN) Summit in Barcelona in June. It’ll be so interesting to meet children and young people from all over the world, coming together for the common aim of improving research into paediatric conditions.

As you can tell, we have been extremely busy recently and will continue to be for the next few months. I am constantly overwhelmed by the positivity and support for the project we have receive and am always so inspired by the people I have met through this work. Thank you to anyone who has dedicated any time to help in any way. I really hope we can make a difference!