New paediatric rheumatology unit to be launched in Wales

07 October 2019
Wales assembly and Darren with daughter, Aimee.

Children and young people in South and Mid-Wales living with inflammatory arthritis, like juvenile idiopathic arthritis and rheumatoid arthritis, will soon benefit from a new paediatric rheumatology service - the first full time specialist service for younger people in Wales living with these conditions.

The announcement comes after our joint campaign with British Society for Rheumatology and the National Rheumatoid Arthritis Society, calling for a dedicated service.

Currently, paediatric rheumatology provision in Wales is only made up of part-time and limited services. This means that many children and families travel long distances to access the services they need. The condition can cause intense pain and fatigue and travelling can worsen these symptoms.

Our involvement

For the last two years, Versus Arthritis, The British Society for Rheumatology and the National Rheumatoid Arthritis Society have been campaigning for a dedicated multidisciplinary paediatric rheumatology service to be established in South Wales, and for an expansion of current services in North Wales.

The campaign led to a successful Motion at the Welsh National Assembly calling for a new service to be established. A subsequent review of paediatric rheumatology services by the Welsh Health Specialist Services Committee (WHSSC) found that a new service was needed.

We’re pleased to announce that funding has now been allocated to support the development of a new Cardiff-based service for children and young people across the South and Mid-Wales region.

New service is welcomed by many families in Wales

The announcement of a new service has been welcomed by many families in Wales. Darren Dworakowski, who lives in Pembrokeshire, is hopeful that his daughter Aimee, who was diagnosed with juvenile idiopathic arthritis (JIA) at the age of 2 will receive a greater level of care.

Darren says: “Aimee was diagnosed with arthritis as a toddler. Eight years on, the financial, emotional and physical impact of her condition, has affected Aimee and the whole family. For the last eight years, we’ve been required to attend at least one hospital appointment per month.

“Travelling long distances has put a huge strain on our family and often, Aimee and her siblings will need days off school, so we can make the 230-mile round trip. When Aimee has been treated locally, the healthcare professionals assigned to care for her, have never treated a child with arthritis. As a parent, this is very stressful.”

Darren adds: "I’m pleased that WHSSC has recognised the need for a full-time paediatric rheumatology unit for South and Mid Wales. I think it will ensure a greater level of care for children and young people affected by inflammatory arthritis and will ensure that skills and knowledge of the condition are developed across the region.”

What’s next?

Mary Cowern, Wales Director at Versus Arthritis, said: “We understand that arthritis can have a huge impact on a person’s quality of life. For the many hundreds of children living with the condition, it often means missing out on key parts of their learning and development at school and socialising with their friends.

“After campaigning alongside BSR, NRAS and families who care for a child or young person with arthritis, we’re confident that this new specialist service will make a huge difference. We will continue the campaign until the new service is fully operating and providing local clinics across South and Mid Wales.”

Have you been affected by this issue?

If you have any questions about the new service, please contact Kay Holmes, Senior Young People and Families Services Coordinator, Cymru Versus Arthritis, on 0800 5200 520.