Brendan Smith (Cavan-Monaghan, Fianna Fail) | Oireachtas source

I wish to record my appreciation to the Ceann Comhairle for selecting this important topic for discussion. Before the Covid-19 pandemic, the waiting list to see a paediatric rheumatologist was three years long. It may very well be worse now. There is also a year's wait for a private appointment. There are only two paediatric rheumatologists for the entire country. Clearly, this level of service is anything but acceptable. Down Syndrome Ireland, Irish Children's Arthritis Network, iCan, and Arthritis Ireland had a meeting with Crumlin children's hospital personnel almost a year ago in respect of these issues.

The family that has been in contact with me posed a legitimate question, on the their own behalf and on behalf of other families, about when the additional paediatric rheumatologist, promised by the then Minister for Health, Deputy Harris, in 2019 will be appointed. Some advocacy groups in this area are strongly of the view that the country needs six such consultants. Given the incidence of Down's syndrome in this country, this issue requires urgent attention. Research has been brought to my attention which shows that one in 50 children with Down's syndrome has arthritis and that annual screening is required. I also understand there is a long delay in getting MRI scans, which is also unacceptable. Appropriate access to such diagnostics is essential.

The parents who contacted me say that Down's syndrome-associated arthritis is a very aggressive disease and requires aggressive treatment with particular medication. Continuous monitoring, along with follow-up MRI scans, are essential to assess the progress and value of such medication. Parents emphasise that these children may also have other ailments, with additional consequences for their immune systems. As we know, delays in getting assessments and follow-up treatment will generally cause further damage to the child's health that cannot be rectified. It has also been represented to me that access to MRIs is further limited as most children with Down's syndrome need a general anaesthetic and cannot avail of the private option.

Children with Down's syndrome face enough challenges without the extra burden of not having essential rheumatology treatment provided in a timely manner. A few years ago, parents were promised that appointments would follow within three months of referral. Regrettably, this evening we are talking about three years, not three months, for referral and follow-up treatment if deemed essential. I appeal to the Minister of State to ensure that this issue is addressed in an appropriate manner without further delay.

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