Development of RAiISE
Back in January, I wrote a blog post about my experiences with having an invisible illness and how much it can affect my day-to-day life. I also introduced a project I am working on with the NIHR Alder Hey Clinical Research Facility (CRF) and Alder Hey NHS Children’s Foundation Trust to raise awareness of invisible illnesses within schools. I am very excited about the project’s progression and I’m looking forward to where it is heading.
Since sharing my first blog post a few months ago, I have had a lot of positive response from a lot of people. I was kindly invited to speak at the Cross Your Own Oceans event for Findacure. There I met several lovely and inspiring young people and their parents who had all had, or were still having, similar experiences. I am also excited about being given the opportunity to speak at the Annual Royal College of Paediatric and Child Health (RCPCH) conference at the end of April. We are even hoping to expand the project internationally over the course of the year. All these things are incredibly exciting and will hopefully generate more and more interest in the project so that we are able to help as many young people with invisible illnesses as possible.Since January I have spent a lot of time trying to let as many people as possible know about the project and try and get many people on board. This has gone very well and I am so pleased to have a group of young people, parents, teachers and healthcare professionals all so eager to help. I have spoken to a lot of young people, all with various conditions, who have had similar school experiences as me. It is reassuring to know that I was not alone in having to fight many battles in order to get the support I needed. Conversely, I have met many young people who have had very positive experiences at school. These people will be vital in providing an example of how to care for students with invisible conditions.