A leading consultant neurologist has warned that access to a newly published care pathway for people with Huntington’s disease (HD) risks becoming ‘a postcode lottery’.
Writing in this edition of the Medical Independent (MI), Prof Orla Hardiman outlined that in 2022 a working group was convened by the HSE, which comprised of the stakeholders involved in the care of those with HD.
The aim of the group was to design a structured pathway for HD, drawing on learnings from the modernised care programme for people with motor neurone disease.
EY was involved in the initial phase of design and a plan was subsequently submitted to HSE senior management.
“However, following the establishment of the health regions, the modernised care programme within the HSE was quietly disbanded,” according to Prof Hardiman.
In late 2025, a working group for HD was again convened. A second, revised document was provided to the HSE Chief Clinical Officer (CCO). The new pathway has recently been published by the HSE.
“However, this much simplified version does not have a budget attached due to the budgetary discretion of the health regions,” Prof Hardiman states.
“This effectively means that those with HD will be subject to a ‘postcode lottery’ for their care. There does not appear to be any mechanism for joined-up thinking across the different regions and there is no scope for the clinical programmes to recommend funding for supra-regional care pathways.”
As a result, families affected by HD will “be at the mercy of the priorities set by their local health region”.
A HSE spokesperson told MI that following the submission of the initial plan, “it was advised at that time to re-establish the working group and re-focus on a number of aspects of the initial pathway.”
“This has been completed and led to the approval by the CCO Clinical Forum of the pathway in August 2026.”
The spokesperson confirmed “the pathway is not yet funded”.
They said people with HD have access to specialist services in all HSE health regions, where there are consultant neurologists and multidisciplinary teams assessing and treating a large range of neurological disorders.
Currently, there are two dedicated advanced nurse practitioners in HD. They are based at Beaumont Hospital, Dublin, and Galway University Hospital. See opinion article, p14.
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