Pádraig O'Sullivan (Cork North Central, Fianna Fail) | Oireachtas source

I follow up on an issue raised earlier by Deputy Naughten concerning European reference networks, ERNs. I note the Tánaiste’s comments and welcome that he believes the ERNs need to be resourced and supported in upcoming Estimates processes but these ERNs cannot be sustained on the goodwill of clinical leads and consultants alone, as is the case now.

Yesterday. the cross-party committee on rare diseases met with Dr. Cormac McCarthy and Dr. Atif Awan, who outlined to us the critical role ERNs should play in the care of people living with a rare disease and highlighted the difficulties they face without adequate support from the HSE. The ERNs need support and investment or we risk losing them. The HSE has provided no funding or support for the work the clinical leads do and has heretofore failed to integrate the ERNs into its structures. No pathways have been established to route patients around the country into their relevant ERN and no support given to clinicians to commission reports or, as Deputy Naughten said, even do basic things like maintain and upload data. This needs urgent attention.

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