Moving in the right direction, #TooyoungforArthritis campaign

2017 03 20 HE JC Bella Philip Andrew RT Davies AM Hari Dawn

Did you know… Wales is the only home nation without a specialist paediatric rheumatology centre and there are an estimated 400 children in South Wales alone that are suffering with Juvenile Idiopathic Arthritis?

We’ve been actively raising awareness together with our campaign partners British Society for Rheumatology (BSR) and National Rheumatoid Arthritis Society (NRAS) to call for the creation of a fully dedicated multidisciplinary paediatric rheumatology centre in Wales.

Our #TooYoungForArthritis campaign received a boost in March as Assembly Members (AMs) once again tabled questions at the National Assembly in Cardiff Bay supporting calls for paediatric rheumatology services to be expanded.

This positive support builds on the productive debate in Plenary at the Welsh Assembly last year, where a motion was passed calling for a new paediatric rheumatology service to be established. A #TooYoungForArthritis awareness raising event in Cardiff Bay last summer was attended by over a third of Assembly Members and kept the campaign momentum building.

As a result of the campaign, a review of paediatric rheumatology provision is currently being undertaken by the NHS Wales body Welsh Health Specialised Services Committee (WHSSC). We were delighted to hear this month that WHSSC has decided to include including paediatric rheumatology in its next annual work plan. This is a significant step forward and means this issue will progress from the initial review stage to future service options being investigated. This takes us one step closer to the possibility of the current partial service being enhanced.

Hywel Evans, Arthritis Research UK, Policy & Engagement Manager Wales said We’d like to say a massive thank you to the families with children who have arthritis who’ve been involved and helped to generate more awareness of the campaign. They understand more than anyone about the impact of childhood arthritis and we certainly could not have made this much progress without their input.   To keep up-to-date with the campaign, follow the latest news on Facebook and Twitter.

Update on Beyond Limits – our project supporting young people with arthritis

The Beyond Limits project funded by Children in Need was launched in March 2017 to provide supportive activities and opportunities to young people with JIA and their families.

Young People & Families Coordinator, Andrea Radisic shares the latest from the Beyond Limits family day in March.

Eight families attended our Beyond Limits event, where we discussed coping skills, giving the young people the opportunity to share their stories and techniques about self-managing their condition."

The afternoon consisted of an amazing game at The Adventure Rooms Cardiff, split into two teams the group had to solve puzzles and clues to escape the locked room in 60 minutes before the other team.

Here’s some of the great comments we had from the attendees.

‘This was SOOOO fun! I would 100% do it again!’  (Eva, 11)

‘I enjoyed the activity that didn’t involve my condition. Nice to do a ‘normal’ fun activity with everyone’ (Shannon, 18).

'It was a brilliant opportunity for the young people to meet other people, socialise and share their experiences!”

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