Call for specialist paediatric rheumatology centre in Wales

When we think about arthritis, we often think of older people, but unfortunately this debilitating condition also affects children. In fact, in the UK, approximately 15,000 children and young people are living with arthritis.

Most types of childhood arthritis are known as juvenile idiopathic arthritis (JIA), which is a severe autoimmune condition that, if not properly treated and managed, can cause significant lifelong disabilities.

Children with arthritis need access to high-quality health and support services to help limit the impact of their condition and to help them reach their true potential. According to AbbVie, the pharmaceutical research and development organisation, one of the most important factors to ensure that a child with JIA doesn’t have severe arthritis and joint damage when they’re adults is for children to receive early diagnosis and treatment. The longer arthritis has been active before treatment begins, the more difficult it is to control the disease. Early diagnosis and treatment can also go as far as prolonging an arthritis sufferer’s life.

With this in mind, it is therefore greatly concerning that there is no specialist paediatric rheumatology centre or full dedicated multidisciplinary paediatric rheumatology services in Wales.

With its 3.1 million population, Wales is the only home nation without such a specialised service. This is in comparison to Northern Ireland with its 1.8 million population, which has one centre, and Scotland with its 5.2 million, which has two centres. England has 12 specialist paediatric rheumatology centres. Children with arthritis in Wales deserve better.

I therefore support calls by Arthritis Care, NRAS and the BSR calling for a tertiary multidisciplinary paediatric rheumatology service to be established in South Wales and an improved provision of services in North Wales.

Due to the population size of North Wales, they do not envisage a full dedicated multidisciplinary paediatric rheumatology unit being developed within North Wales, but do believe there is a significant need to improve paediatric rheumatology provision in the region.

They feel that whilst the current provision of services to children and young adults across North Wales is inadequate and requires development, there is an opportunity to utilise the current service model to develop a much improved service across North Wales and are currently in discussion with local stakeholders to develop proposals to support such a development.

Options they are exploring include increasing the number of visiting clinics provided from Alder Hey Hospital, the development of paediatric rheumatology specialist nurse roles based within North Wales and the development of transitional clinics within North Wales.

If a new multidisciplinary paediatric rhuematology service is developed in South Wales, they don’t want to see children and young adults in North Wales having to travel to South Wales to access the service, and neither do I. These children are in pain and can’t cope with long journeys.

Having arthritis can have an impact on all aspects of a child’s life – including otherwise routine day-to-day activities, family and social life activities, as well as education. These children have it tough and we need to be doing all we can to support them. They have every right to access the quality of treatment that we would expect throughout the entire NHS and the fight will continue until they get it.