Tuesday, 23 July 2019

Questions (1262)

Peadar Tóibín


1262. Deputy Peadar Tóibín asked the Minister for Health if he will address matters in relation to the treatment of Huntington's disease (details supplied). [32413/19]

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Written answers (Question to Health)

Huntington's Disease is an inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain and can cause a range of symptoms. This disease has a broad impact on a person's functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders. Diagnosis is based on clinical symptoms and signs in an individual with a parent with proven Huntington's Disease and is confirmed by confirmation of the presence of the Huntington's Disease gene. There is no cure. Management is multi-disciplinary and is based on treating symptoms with a view to improving quality of life.

Any patient is eligible to apply to the Drugs Payment Scheme or to apply for a Medical Card. In addition, under the Drug Payment Scheme, no individual or family pays more than €124 a month towards the cost of approved prescribed medicines. The scheme significantly reduces the cost burden for families and individuals with ongoing expenditure on medicines. People who cannot, without undue hardship, arrange for the provision of medical services for themselves and their dependants may be entitled to a medical card or other state financial supports. In the assessment process, the HSE can take into account medical costs incurred by an individual or a family.  People who are not eligible for a medical card may still be able to avail of a GP visit card, which covers the cost of GP consultations. The Department of Employment Affairs and Social Protection can provide further information on the supports and services they can provide including Illness Benefit, Disability Allowance, Carer’s Allowance, Carer’s Benefit and Carer’s Support Grant.

General medical services are provided by GPs. If the patients clinical condition warrants a referral to a Consultant then their GP will organise that for them. A patient's Local Health Office is the entry point to access wider community health and personal social services. In addition to GP services these also include public health nursing, community welfare, speech therapy, social work, physiotherapy, occupational therapy, chiropody, psychiatric services and home help. The Department of Health also supports a non-condition specific approach to the delivery of health and personal social services to people with a disability. The overarching principle governing the planning and delivery of health services and supports for adults and children with disabilities, is that they should be integrated as much as possible with services and supports for the rest of the population. The Government’s policy in this regard is set out in the National Disability Inclusion Strategy (NDIS) which was published by the Department of Justice and Equality in July 2017

There are no plans to add this condition to the list of conditions currently listed under the Long-Term illness scheme. Instead, Sláintecare is focused on the need to expand entitlement and eligibility as part of a transition towards universal health and social care access. In 2019-2020 various entitlement and eligibility scenarios will be modelled and costs and benefits will be examined. Sláintecare proposes providing universal services at no or low cost to the patient / service user. Sláintecare will report on how, when, and in what order of priority this could be done and make proposals to government for consideration.

This question also concerns service matters and as such it has been referred to the Health Service Executive for attention and direct reply to the Deputy.