Dáil Éireann Debate, Monday - 7 September 2026
3172. Deputy Barry Ward asked the Minister for Health the position regarding any engagement she has had with the HSE in relation to a case (details supplied); the actions she is taking to ensure that situations like this cannot arise again; and if she will make a statement on the matter. [60207/26]
Amharc ar fhreagra3189. Deputy Barry Ward asked the Minister for Health the position regarding the review process behind the implementation of the National Huntington's Disease Care Pathway; and if she will make a statement on the matter. [60196/26]
Amharc ar fhreagra3191. Deputy Barry Ward asked the Minister for Health the position regarding a timeline for the implementation of the National Huntington's Disease Care Pathway; and if she will make a statement on the matter. [60199/26]
Amharc ar fhreagra3195. Deputy Paul McAuliffe asked the Minister for Health if she has given consideration to the National Huntington's Disease Care Pathway; and if she intends to implement the care pathway. [60280/26]
Amharc ar fhreagra3203. Deputy Ruth Coppinger asked the Minister for Health her plans to implement the updated Huntington's Disease Care Pathway that has been recently submitted to the HSE; and if she will make a statement on the matter. [60498/26]
Amharc ar fhreagra3209. Deputy Louis O'Hara asked the Minister for Health if additional resources will be made available to implement the care pathway for Huntington’s disease; and if she will make a statement on the matter. [60575/26]
Amharc ar fhreagra3359. Deputy Michael Cahill asked the Minister for Health to approve, fund and implement the National Huntington's Disease Care Pathway (details supplied); and if she will make a statement on the matter. [60129/26]
Amharc ar fhreagra3363. Deputy Shónagh Ní Raghallaigh asked the Minister for Health her plans for funding and regional implementation of a national Huntington’s disease care pathway for Ireland; and if she will make a statement on the matter. [60148/26]
Amharc ar fhreagra3367. Deputy Matt Carthy asked the Minister for Health her response to a High Court ruling whereafter a judge said there is an urgent requirement for a national care pathway to help those diagnosed with Huntington’s disease, the rare genetic condition. [60168/26]
Amharc ar fhreagra3412. Deputy Grace Boland asked the Minister for Health whether funding for the National Huntington's Disease Care Pathway will be approved simultaneously with the pathway itself to ensure immediate implementation following approval and will she make a statement on the matter. [60871/26]
Amharc ar fhreagra3413. Deputy Grace Boland asked the Minister for Health whether dedicated national funding has been allocated for the implementation of the National Huntington's Disease Care Pathway; if so, the amount allocated and if she will make a statement on the matter. [60868/26]
Amharc ar fhreagra3449. Deputy Barry Ward asked the Minister for Health if her attention has been drawn to a case (details supplied); the actions she will take to address the significant issues related to the care and treatment for people diagnosed with Huntington's Disease; and if she will make a statement on the matter. [60203/26]
Amharc ar fhreagra3456. Deputy Michael Cahill asked the Minister for Health to ensure resources are made available to implement the care pathway for Huntington’s disease (details supplied); and if she will make a statement on the matter. [61269/26]
Amharc ar fhreagra3463. Deputy Roderic O'Gorman asked the Minister for Health her plans to provide funding and regional implementation for a national Huntington’s disease care pathway for Ireland; and if she will make a statement on the matter. [60303/26]
Amharc ar fhreagra3487. Deputy Paul McAuliffe asked the Minister for Health if she will ensure that resources are made available to implement the National Huntington's Disease Care Pathway for Huntington’s disease. [60320/26]
Amharc ar fhreagra3980. Deputy Eoin Hayes asked the Minister for Health the details of the care pathway for Huntington's disease; and the timeline for its full implementation. [63921/26]
Amharc ar fhreagra4008. Deputy Fionntán Ó Súilleabháin asked the Minister for Health if her attention has been drawn to the recent High Court judgment by Mr Justice Paul Coffey, which described the total absence of a coordinated care pathway for Huntington's disease (HD) in Ireland as "shameful" and "urgently required"; the reason the comprehensive proposal for a National HD Care Pathway submitted to the HSE by clinical experts and an organisation (details supplied) has not been implemented or funded; and if she will make a statement on this matter. [63571/26]
Amharc ar fhreagraI propose to take Questions Nos. 3172, 3189, 3191, 3195, 3203, 3209, 3359, 3363, 3367, 3412, 3413, 3449, 3456, 3463, 3487, 3980 and 4008 together.
Officials from the Department have been in contact with the HSE to seek an update on development of the Huntington’s Disease pathway.
I am advised that following a multi-stakeholder Huntington’s Disease Care Pathway Planning Workshop in 2022, a working group was established to commence a modernised care pathway design, which included representation from Huntington’s Disease patient advocacy groups, Health and Social Care Professionals (HSCPs), nursing, disability services, psychiatry and the National Clinical Programme (NCP) for Neurology. This working group developed a draft Huntington’s Disease Pathway which was reviewed by the relevant HSE National Clinical Director, Clinical Leads, and Clinical Advisors in March 2024.
I understand at this point, it was recommended that in order to progress the pathway further, making it more integrated and availing of resources that may be available, a working group should be reconvened, to include additional key stakeholders.
A Huntington’s Disease working group was re-convened and meetings were held between Q1 2025 and Q2 2026. Membership included representatives from NCP Neurology, National Dementia Service, NCP Palliative Care, NCP Older Persons, Psychiatry, Neuropsychology, Neurology, Huntington’s Disease Association Representative (PPI), Bloomfield Hospital, Disability and Mental Health services, and specialist nursing. The finalised draft pathway was submitted to HSE Chief Clinical Officer (CCO) Clinical Forum for consideration in July 2026.
The CCO Clinical Forum subsequently approved this clinical design in August 2026. The HSE advise that the approved pathway will now be circulated to the relevant stakeholders.
As you are aware, decisions on service developments and funding are considered through the annual Estimates, Budget and HSE National Service Planning processes. The issues raised in your correspondence have been noted and will be considered in that context for 2027, alongside wider service priorities and available resources.
