Blog by Sophie Ainsworth

It’s been a while since my last blog post but that certainly doesn’t mean that we haven’t been busy with all things RAiISE! It has been an incredibly exciting few months as I have been promoting and sharing the project as we become closer to finishing the first draft of our information pack.

It was great to represent Lupus UK at the Paediatric Rheumatology European Society in Italy at the end of last year. I was given the opportunity to speak about RAiISE to members of the European Network for Children with Arthritis which mainly included parents of young people who had arthritis as well as some medical professionals from all over Europe. The response to RAiISE was incredibly positive and it became evident that a lack awareness of invisible illnesses, especially in schools, was something that was common across the continent. This makes me hope that in the near future we will be able to expand RAiISE and work together with the friends we made at the conference to share it internationally.

Earlier this year, I was honoured to be informed that I had been nominated for a North West Coast Research and Innovation Award for Outstanding Contribution to Patient and Public Involvement in Research (skip to 4.16 mins and 6.12 for photos of me with my award). It was wonderful to be nominated and even better to find out on the night that I had won! It was a lovely night spent celebrating the amazing work that is being done across the North West in healthcare and research.

We have also now established a RAiISE Committee who are a team of fantastic, hardworking people who are dedicated to making the project as successful as possible and we have spent a lot of time working together to write the first draft of the information pack we are creating. The pack will include things such as ‘Top Tips’, communication strategies, a ‘Health Passport’, which will highlight a student’s individual needs and an accessible toilet sign, indicating that someone doesn’t need to be visibly ill in order to use it. I’m really looking forward to sharing our hard work at our next focus group meeting on 18th March at Alder Hey. It will be a great day where young people, parents, medical and education professionals will be able to view the content for the first time and give their opinions on what we have created so far. I’m really looking forward to the day and would like to invite anyone who is interested to come along and give us some feedback.

As ever, we have a busy few months ahead as the information pack is finalised and I can’t wait to have a finished product! Thank you to everyone who has dedicated their time to help support RAiISE over the past year, I’m can’t wait to continue to work with such inspiring and dedicated people.

Also check out this video about some of our fund raising activities for Alder Hey Children’s Hospital.

Please also follow us on Twitter @raiiseuk