Written answers

Thursday, 31 March 2022

Department of Health

Disease Management

Photo of Jackie CahillJackie Cahill (Tipperary, Fianna Fail)
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28. To ask the Minister for Health the way in which he intends to improve services for persons with Huntingdon’s disease; and if he will make a statement on the matter. [16864/22]

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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Huntington’s Disease is a rare, complex, hereditary neurological condition with an estimated 1,000 people suffering from the disease in Ireland.

The National Clinical Programme for Neurology (NCPN) have been working in conjunction with HSE Scheduled Care Transformation Programme (SCTP), Strategy and Planning, through 2021 and 2022 on a proposed development on an integrated pathway for Huntington’s Disease.

As Huntington’s Disease is a complex condition that requires support across all aspect of the healthcare system, development of an integrated pathway will require detailed engagement with all stakeholders.

Patients with Huntington’s Disease are regularly seen through the ENROL-HD research programme at Beaumont Hospital.

A weekly clinic has been initiated in Beaumont to share best practice and mirror the existing national Motor Neuron Disease service in providing multidisciplinary care.

Supports for people with Huntington’s Disease are provided across acute hospital, primary care and community service settings.

The HSE funds a range of community services to people with a disability, to enable each individual to achieve their full potential and maximise independence, including persons with Huntington’s Disease.

These include Personal Assistant Services and Home Support, Therapy Services, Respite Care and Medical Aids and Appliances.

Services are provided either directly by the HSE or through a range of voluntary service providers, and in line with policy, are provided based on individual need rather than on diagnosis.


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