QUESTION to the Minister of State at the Department of Health (Kathleen Lynch)
For WRITTEN ANSWER on 13/11/2014
To ask the Minister for Health the supports and services available to persons with Huntington’s disease; if there will be any Irish participation in Enroll-HD, a worldwide observational study for Huntington’s disease families; and if he will make a statement on the matter. – Jerry Buttimer T.D.
The supports provided by the Health Service Executive to people with Huntington’s Disease involve a multi-disciplinary team approach. This approach incorporates the provision of health and personal supports and incorporates Acute Hospital Services, Primary Care, Community Services and specialists disability supports and services.
The Huntington’s Disease Association of Ireland provides consultation, information and individualised support to those diagnosed with Huntington’s Disease, their families and their health care team. The Health Service Executive recognises the valuable contribution the Association provides to those who suffer from Huntington’s Disease, their families and carers. The HSE provided a grant totalling €68,887 in 2013 to support the Association in their work.
In relation to the specific queries raised by the Deputy, as these are service issues, they have been referred to the HSE for direct reply.
If the Deputy has not received a reply from the HSE within 15 working days, he can contact my Private Office and they will follow up the matter with the HSE.