Written answers

Tuesday, 16 October 2012

Department of Health

Health Services Provision

Photo of Joe McHughJoe McHugh (Donegal North East, Fine Gael)
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To ask the Minister for Health if he will update Dáil Éireann on services provided by the State for citizens who suffer from Huntington's disease; if he envisages that improved neurological, genetic, psychiatric and psychological services will be available as part of a national strategy for the treatment of rare diseases; if he will engage with the British Government on the idea of sharing services for sufferers of Huntington's disease; if the fair deal scheme will incorporate home care support and respite services for sufferers who are age less than 65 years; if his Department will consider special facilitation for sufferers of chronic, progressive and incurable conditions including Huntington's disease, who must reapply for medical cards; and if he will make a statement on the matter. [44528/12]

Photo of Pádraig Mac LochlainnPádraig Mac Lochlainn (Donegal North East, Sinn Fein)
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To ask the Minister for Health his plans to resource the much needed support for persons living with Huntington's disease (details supplied) [44753/12]

Photo of Pádraig Mac LochlainnPádraig Mac Lochlainn (Donegal North East, Sinn Fein)
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To ask the Minister for Health the number of persons in County Donegal that have been diagnosed with Huntington's disease [44754/12]

Photo of Pádraig Mac LochlainnPádraig Mac Lochlainn (Donegal North East, Sinn Fein)
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To ask the Minister for Health the number of persons countrywide that have been diagnosed with Huntington's disease [44755/12]

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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I propose to take Questions Nos. 659 and 687 to 689, inclusive, together.

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.

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.

I established a National Steering Group to develop a policy framework for the prevention, detection and treatment of rare diseases based on the principles of high quality care, equity and to be patient centred. The policy will operate over a five year period, take account of the EU Council Recommendations on Rare Diseases (2009) and define priority actions subject to resource availability. Similar plans are being drafted by individual countries across the EU. Article 12 of Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients' rights in cross-border healthcare establishes that the Commission shall support Member States in the development of European Reference Networks between healthcare providers and Centres of Expertise in the Member States. It is envisaged that the main added value of the European Reference Networks and therefore of the Centres of Expertise will be to facilitate improvements in access to diagnosis and delivery of high-quality, accessible and cost-effective healthcare in the case of patients who have a medical condition requiring a particular concentration of expertise or resources, particularly in medical domains where expertise is rare. Work is ongoing on at EU level on the development of criteria, structures and governance arrangements for such networks and the Department of Health is participating in the relevant Expert Groups.

The Nursing Homes Support Scheme, A Fair Deal , is a system of financial support for people who require long-term nursing home care. The Programme for Government commits to review the Scheme with a view to developing a secure and equitable system of financing for community and long-term care which supports older people, including those with Huntington's Disease to stay in their own homes. My Department has requested information from the HSE on the numbers of people in Co. Donegal and nationwide who have been diagnosed with Huntington's Disease and my Department will forward that information to the Deputy as soon as possible.

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