Kathleen Lynch (Cork North Central, Labour) | Oireachtas source

I thank the Senator. I shall commence by saying that I know about the disease. I first encountered it because my neighbour had the disease but it was called Huntington's Chorea at the time. It is a most distressing and cruel disease. Huntington's disease is a genetic neurological disorder and is classified as a rare disease. I shall not deal with the medical card issue raised by the Senator in my reply but I take on board what he has said and shall convey the matter to the relevant Minister.

The supports provided by the Health Service Executive to people with Huntington's disease involve a multidisciplinary team approach to the provision of health and personal supports. It incorporates acute hospital services, primary care, community services, specialists, disability supports and supports services.

The Huntington's Disease Association of Ireland provides consultation, information and individualised supports 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. It provided a grant totalling €66,887 in 2013 to support the association in its work.

Other developments that are under way and relevant to people's families and staff working with Huntington's disease include the following: the development of an implementation plan for the national policy and strategy for the provision of neuro rehabilitation services; the HSE clinical care programme in neurology and rehabilitation medicine; and the finalisation of a plan or strategy for rare diseases in Ireland, as recommended by the Council of the European Union.

Any patient with a diagnosis of Huntington's disease will be treated and cared for in one of the HSE's neurological departments. The diagnostic process will involve assessment between a consultant neurologist and other disciplines such as neuro psychology as part of the diagnostic process. Patients may also have a specific genetic test undertaken to confirm a diagnosis of Huntington's disease. The genetic test is carried out by the National Centre for Medical Genetics. The centre also offers patients with a known family history of Huntington's disease the ability to undertake a predictive test to assess the likelihood of inheritance. Predictive testing is only performed in conjunction with a counselling programme run by the clinical genetics division of the National Centre for Medical Genetics. I have been informed that there have been 27 clinical referrals in 2012 and 21 clinical referrals to date in 2013 in respect of Huntington's disease.

Beaumont Hospital provides specific clinics in respect of people with Huntington's disease and its department of psychology provides a specialist neuropsychology service for people diagnosed with Huntington's disease. Patients referred to the service receive a detailed neuropsychological assessment that examines aspects of thinking, emotion and behaviour in line with international guidelines on the assessment of Huntington's disease. Patients can also receive supportive psychotherapy and behavioural management, where appropriate. A supportive service for carers and family members of patients with Huntington's disease is also available. The HSE has informed the Department that the clinic currently operates fortnightly but individual sessions are available by appointment outside of clinic hours.

In Galway, patients with Huntington's disease are referred to the hospital's movement disorder clinic. A clinical nurse specialist also attends the clinic in addition to providing a telephone advice and support service to patients each day during the week.

A six-storey unit in the Mid-Western Regional Hospital in Limerick will be completed in early 2014. It will bring together existing and, in some cases, deliver new services for patients under one roof at the hospital. Floor 1 of the unit will include a six-bed acute stroke unit with the most advanced diagnostic equipment. In addition, the floor will also accommodate a neurological centre. Among the neurological conditions to be treated in the new unit will be Huntington's disease, Parkinson's disease, motor neurone disease and muscular dystrophy.

I thank Senator Crown for raising the issue of Huntington's disease. The Government is committed to advancing treatment and support for people who have rare neurological conditions through improved standards, quality of care, improved access to service and improved costs and efficiency. As I said, I have not addressed the medical card issue but I shall ensure that his message is delivered loud and clear.