565 Children Waiting in Pain

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Children with arthritis are fed up waiting in pain. 565 is the number of children waiting to see a consultant paediatric rheumatologist for the treatment of childhood arthritis, Juvenile Idiopathic Arthritis (JIA). The latest figures show that the waiting list crisis has intensified, with the number of children waiting in pain for over a year and a half increasing by an exponential 400% since January, 2016.

More than 1,200 children are living with arthritis in Ireland today, making it as common as childhood diabetes. However, the paediatric rheumatology service at Our Lady’s Children’s Hospital, Crumlin (OLCHC) is inadequately staffed to deal with the volume of children waiting to be seen. There are just two dedicated consultant paediatric rheumatologists appointed for the entire country to cater for children who live with constant pain in their joints and many other parts of their bodies. There is no cure for arthritis but with the correct standards of care children can have as normal and as active a life as possible.

The inadequate staffing levels are leading to waiting lists of more than a year and half for children with suspected arthritis. This is despite recommendations from the British Society for Paediatric and Adolescent Rheumatology (BSPAR), which states that children with suspected arthritis must be seen by the paediatric rheumatology team within four weeks of the referral being made.

Sixteen-year-old Darcy White waited for almost two years to be seen and commented: “Having waited for nearly two years to be diagnosed, I know how important it is to have quick access to a rheumatologist to get the treatment you need. Nobody knows this moredarcywhite than me, had I been seen earlier my condition would not be this aggressive. The pain is excruciating, it often brings me to tears. Arthritis is an aggressive autoimmune disease that isn’t going anywhere. Most days when I come home from school I lie in bed, I don’t
have the energy to go out. Arthritis came out of nowhere and changed my life completely; it stopped me from doing the things I love, and I hate it for that. I wish I didn’t have to fight arthritis, it seemed a lot easier at first, but now I’m exhausted. But staying positive and hoping that one day we will manage the pain and I will go into remission, helps me to stay strong and more determined to fight. I wish with all my heart that the services for children with arthritis would improve, children should not be left waiting in pain. Don’t they realise they are robbing our childhood and causing irreparable damage physically and emotionally? Don’t they care?

John Church, CEO of Arthritis Ireland, said: “Ireland has only two paediatric rheumatology consultants, we are ranked as having one of the lowest number of paediatric rheumatologists in Europe. If left untreated, it can quickly lead to permanent joint damage, muscle wastage and deformity, not to mention the trauma a child and its family experiences. Children deserve better.”

This is a national crisis, so enough is enough. As part of National Arthritis Week, Arthritis Ireland are calling for the urgent appointment of a third consultant paediatric rheumatologist to be appointed at OLCHC to help ease the huge burden on the already overstretched services. Children on waiting lists are not just waiting in pain; they are also at risk of permanent, irreversible joint damage that impacts on their ability to live a normal a life as possible.

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