Sir, – I have a son with Down Syndrome and a rare auto-inflammatory disease causing complex medical issues. One of the 13 teams he attends at Our Lady’s Children’s Hospital, Crumlin, is rheumatology. Did you know that we only have two paediatric rheumatologists for the entire country? We should have a minimum of six! We are promised a third this year, according to Minister for Health Simon Harris, in an announcement late last year! We are still waiting.
Care can’t wait, especially when it affects babies and children. Did you know that there is a three-year waiting list to see a paediatric rheumatologist? If you are fortunate enough to be seen privately then there is a nine-month wait! Then a further two-year wait for an MRI which many need for definitive diagnosis.
There is one cohort of children who have been forgotten in all of this and they are the children who have Down Syndrome. In research a few years ago, it was found that one in 50 have arthritis so they are all “supposed” to be screened. But that isn’t happening. They are all supposed to be seen within three months of referral but it’s more like three years! In that time irreversible damage is done, causing terrible pain and often further disability.
Routine screening and early referral should lead to quicker diagnosis, which should lead to quicker treatment, preventing permanent damage.
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Many have no voice and need strong advocates. People may not realise how devastating arthritis or rheumatological diseases are, but I do. My son knows, he is 14 years old and the size of a six-year-old child, he has a severe to profound intellectual disability, he is non-verbal, he cannot walk, he wears nappies, he is tube-fed, and he is on 15 different medicines.
All children with Down Syndrome need to be screened, and funding needs to be made available to the rheumatology unit in Crumlin.
Children should not be languishing on waiting lists for three years while this disease ravages their little bodies.
Care can’t wait! – Yours, etc,
AISLING McNIFFE,
Ardclough,
Co Kildare.