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Health Services Provision

Dáil Éireann Debate, Thursday - 27 September 2012

Thursday, 27 September 2012

Ceisteanna (69)

Brian Stanley

Ceist:

69. Deputy Brian Stanley asked the Minister for Health if he will address the need for greater support for persons with Huntington's Disease, including the provision of a HD neurology clinic, the promotion of increased awareness, the provision of medical cards for persons with the condition and all-Ireland cooperation in services; and if he will make a statement on the matter. [41008/12]

Amharc ar fhreagra

Freagraí scríofa

Huntington's Disease (HD) is a genetic, neurological disorder and is classified as a rare disease. The supports provided by the Health Service Executive (HSE) to people with HD involve a multi-disciplinary team approach to the provision of health and personal supports and incorporates assisted living services, including Personal Assistant Services, Aids & Appliances and hospital, primary care and community services.

The Huntington's Disease Association of Ireland (HDAI), provides consultation, information and individualised support to those diagnosed with Huntington's Disease, their families and their health care team. The HSE is committed to working in partnership with voluntary disability service providers including HDAI, to ensure that all of the resources available for people with disabilities are used in the most effective manner possible. The HSE recognises the valuable contribution of the HDAI and approved a grant of just over €68,000 for 2012 to support the work of the organisation. The HDAI is a member of the Neurological Alliance of Ireland and the Disability Federation of Ireland. Both umbrella organisations provide support to the HDAI and are supported by the State through funding from the Health Service Executive.

The Report - "The National Policy & Strategy for the Provision of Neuro-Rehabilitation Services 2011 - 2015" published in December 2011 and jointly commissioned by the Department of Health and the Health Service Executive (HSE), is the over-arching policy on Neuro-rehabilitation services. In conjunction with the development of the Rehabilitation Medicine Programme of the HSE Clinical Strategy Programmes Directorate, there is now a clear policy with a recommended service framework, which when implemented, will ensure that neuro-rehabilitation services are developed for those we serve in the most appropriate, effective and efficient way. The HSE National Service Plan 2012, specifically supports the work of the Rehabilitation Medicine Programme in committing to the development of regional networks, local rehabilitation teams and the development of associated protocols, pathways and bundles. The appointment of Regional Rehabilitation Medicine Consultants will, together with a multi-disciplinary team, ensure that national best practice is implemented in each Region, crossing the boundaries between acute and community services.

Medical cards are provided to persons who, under the provision of the Health Act 1970, are in the opinion of the HSE unable without undue hardship to arrange GP services and other health services for themselves and their dependants. The assessment for a medical card is therefore determined primarily by reference to the means, including the income and expenditure, of the applicant and his or her partner and dependants. Under this legislation, there is no automatic entitlement to a medical card for persons with specific illness such as Huntington's Disease. There is however, a provision for discretion by the HSE to grant a card in cases of "undue hardship", where the income guidelines are exceeded. The HSE has recently set up a clinical panel to assist in the processing of applications for discretionary medical cards where there are difficult personal circumstances.

Ireland has been supportive of EU proposals on rare diseases, which concluded with a council recommendation in June 2009 that countries are recommended to develop plans or strategies preferably by the end of 2013. We are now well advanced in developing this work. I established a National Steering Group to develop a policy framework for the prevention, detection and treatment of rare diseases. The Steering Group consulted extensively with patients and key stakeholders in June and July of this year and it is expected that the Steering Group will submit a plan to me towards the end of this year.

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