Young people tell politicians about life with childhood arthritis

Two youngsters from west Wales attended an event at the National Assembly for Wales today to raise awareness of childhood arthritis.
Aimee Dworakowski from Haverfordwest and Aaron York from Carmarthen spoke with Joyce Watson AM about living with the condition.
The event, held in Cardiff Bay’s historic Pierhead building, highlighted the lack of specialist services in Wales. Unlike England, Scotland and Northern Ireland, Wales does not have a specialist paediatric rheumatoid centre or a fully-dedicated multidisciplinary paediatric rheumatology service.
Nine-year-old Aimee, who lives in St Ishmaels and attends Ysgol Glan Cleddau in Haverfordwest, and 12-year-old Aaron, a pupil of Carmarthen’s Queen Elizabeth High School, regularly travel for treatment from west Wales to Cardiff, often missing school.
Arthritis Care Wales, the National Rheumatoid Arthritis Society (NRAS) and the British Society for Rheumatology (BSR) are now calling for a specialist service to be established in south Wales, as well as improved provision in north Wales.
Joyce Watson said:
“I am very grateful to Aimee and (her dad) Darren, and Aaron and (his mum) Vanessa, for coming here today to share with us their experience of living with auto-immune arthritis.”
The Labour member for Mid and West Wales explained:
“At the moment, in south Wales, there is an experienced adult rheumatologist working part-time at University Hospital Wales in Cardiff – and a limited visiting service from Bristol at Swansea. For north Wales patients, Liverpool’s Alder Hey Hospital provides limited visiting clinics. So accessing care can be a big disruption in these children’s and their families’ lives.
“Earlier this year, the Welsh Health Specialist Services Committee (WHSSC) confirmed that they will be undertaking a comprehensive review of paediatric specialised services including rheumatology, which will consider the viability of a permanent service at the Children’s Hospital for Wales. I look forward to the outcome of that review.”
Juvenile Idiopathic Arthritis (JIA), which affects around 12,000 children in the UK, is an auto-immune condition that causes severe joint pain, swelling and stiffness. If not properly treated and managed, it can cause significant life-long disabilities.