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Children’s waiting times for specialists are unacceptable – McLellan

26 February, 2015

Commenting today during the Oireachtas Health committee meeting on Rare Diseases with representatives from the HSE and the Department of Health and Children and the Genetics and Rare Disorders Organisation (GRDO), Sinn Féin TD and Spokesperson on Children’s Affairs Sandra McLellan stated that the current waiting times for assessment by an appropriate special disease specialist were unacceptable.

Deputy McLellan said:

“The National Rare Disease Plan for Ireland 2014 - 2018 states that between 1 in 4 and 1 in 5 of rare disease patients wait over a year for assessment by an appropriate rare disease specialist.  Given that rare diseases require significant medical investigations with patients, and early diagnosis especially for children, I find this unacceptable.”

 “An appointment with a specialist should follow within 3 months of referral by a GP. And assessment should occur within 3 months, including genetic counselling for potentially affected family members in families where a genetic disease has been detected.”

“Dr. John Devlin, Chair of the National Steering Group on Rare Diseases correctly pointed out today during our meeting that 'Rare diseases in Ireland are not rare, they're common'. Indeed, Ireland has the highest incidence of Cystic Fibrosis in the world.”

“Early diagnosis and assessment is essential for the best possible chance in fighting any disease. I am calling on the Minister for Health and Minister for Children to urgently address the issue of excessive waiting times for children and adults with rare diseases.”

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