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.

I referenced the Deputy’s interest in this in my earlier contribution and his long-standing advocacy in this area. I spoke with the Minister for Health on the ERNs and the necessity to provide resources to build up supports for the clinicians involved, as well as to recruit people to the service to enable a critical mass of people within the HSE to be focused on our participation in ERNs. They are the way forward to bring expertise and knowledge together.