@DonnellyStephen @AnneRabbitte @rodericogorman @paulreiddublin I have written to you all about lack of access to Paediatric Rheumatology. I am hoping you will meet with me to discuss. My letter details how children with Down Syndrome have been let down by the health system. 1/
I learned today that the waiting list for a Paediatric Rheumatology appt is now 4 YEARS long not 3 as I said in my letter. It is a year long wait if parents opt to go privately. Most are forced. This is NOT acceptable. @CMRF_Crumlin @DownSyndromeIRL @Arthritisie @iCANIreland 2/
I am begging for a meeting with the Minister for Health for a long time. When is it going to be @DonnellyStephen ? This is URGENT! @OCO_ireland I have also written to the Ombudsman for children. 1 in 50 children w/ Down syndrome have arthritis v’s 1 in 1,000 of the NT pop. 3/
Yet the children with Down Syndrome can’t even get a referral. GPs are not aware of the prevalence. Paediatricians aren’t even aware. Children with DS need annual screening for arthritis by a Paediatric Rheumatologist. Most kids cannot say they have pain & many are non verbal. 4/
When will you all listen? My son has DS, a severe/ profound intellectual disability , a rare auto-inflammatory disease & is non verbal. He is under the care of Paediatric Rheumatology since he was a year old. Down syndrome associated arthritis is twice as aggressive than JIA. 5/
He is a full-time wheelchair user. He requires around the clock care. He suffers from chronic pain. He is under the care of at least 13 medical teams. Research is necessary as we don’t know yet what drugs/ biologics work for this cohort of kids. Jack is on his 4th biologic. 6. 🙏
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