Huntington’s Disease patients

[Speaking in the Seanad during Matters on the Adjournment with Minister of State at the Department of Health, Deputy Kathleen Lynch]

I thank the Minister of State for taking this Adjournment matter. I want to tell her about a particularly troubling illness called Huntington’s disease on which I am sure she has accumulated some information. For the benefit of the uninitiated this is a disease which has an incidence of about one in 10,000 in the European population. It is a disease which is incredibly cruel in its trajectory. It is a genetic disease which is governed by a form of inheritance called autosomal dominant inheritance which means that if one has the disease there is a 50% chance one will pass on the gene to any offspring child. If he or she has the gene they will develop the disease. There are certain quirks in the genetics of the disease. It sometimes occurs in earlier manifestations in succeeding generations. People who courageously elect to have the test to see if they carry the gene, even though they are in good health, often do it to make important life decisions, reproductive decisions. If they carry the gene they know they are facing an utter inevitability of a serious illness which will give them catastrophic physical and mental decline. Typically, the time of the appearance of the first symptom to the time of death is about 20 years. Most people develop the symptoms during their mid-30s which means that during their latter young years and their early middle years they are developing severe progressive neurological abnormality, progressing ultimately to paralysis, dementia, heart failure, etc.

The reason I find this issue topical is that a citizen of our Republic wrote to me asking that I bring her plight to the attention of the House.

This was a young woman who had a husband in his early 50s who had been diagnosed with Huntington’s disease and he would rapidly reach the stage of requiring absolute care and could no longer be cared for at home. He required, for want of a better word, institutionalisation in a nursing home. He was assessed there, as would any other resident of a nursing home be, and they have found themselves making a major contribution to the care in a commercial nursing home on the basis that they had an asset, namely, their mortgaged home.

I guess what really brought the matter to my mind was the fact that patients who have the disease do not automatically quality for a medical card. They may qualify for a medical card on the basis of a means test but they do not qualify statutorily because the disease is not on the list of conditions that grants automatic access to a medical card. The matter needs to be rectified. Patients will often get a medical card but, as things stand now, they must go through a renewal process even though the circumstances for people with the disease do not change. Let me rephrase that by saying that their circumstances do change because they get worse. It is cruel that people who have the disease are asked to renew medical card applications with the uncertainty that they may not get one. In truth, the condition is of such catastrophic severity and so uncommon that a caring society should make a provision that basic care associated with a medical card should be made available to people.

I know the Minister was dealt a miserable set of cards at the time he found himself in public office in terms of the public finances. I understand that there are a number of demand restriction measures that take place across the health, social and educational services. It is hard to escape the conclusion that the new focus on the assessment of “probity” for medical card applications has something to do with demand limitation.

I ask the Minister of State to take a special look at the plight of people who have Huntington’s disease and other chronic neurodegenerative conditions where no cure is available and treatment is purely palliative. The diseases make people completely disabled and place an extraordinary burden on sufferers and their families. It is estimated that every Huntington’s disease patient directly affects the lives of at least four other people in Ireland. I thank the Minister of State for paying attention to this Adjournment matter.

    Minister of State at the Department of Health (Deputy Kathleen Lynch):

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.

Senator John Crown: Go raibh maith agat an tAire agus fáilte arís. I thank the Minister of State for her reply and I am grateful for the attention paid to the matter.

I ask her to convey three messages. First, please examine the medical card issue. I know that she will do so because I respect her word on the matter. Second, there must be some assessment of the adequacy of the arrangements that are in place for providing long-term care for the patients who sadly reach a very advanced stage of neurological deterioration that requires professional institutionalised care so can no longer can be cared for in the home. We must establish whether it is appropriate that they are assessed in the same way as everyone else who enters nursing home care. Third, we must consider establishing a national strategy for chronic neurodegenerative care. I thank the Minister of State.

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