Thursday, 9 February 2017
Topical Issue Matters
In effect, I seek an update on progress and funding of a narcolepsy clinic in St. James's Hospital. For those who perhaps are not acquainted with the condition, it is a very serious one. It has a very serious effect on people's lives and restricts their future hugely. Not only are they unable to regulate their own sleep patterns but their personalities can change drastically. There are around 70 to 200 estimated cases in the country. The State says there are between 70 and 100, but the Society of Unique Narcolepsy Disorder, SOUND, estimates that as many as 200 people of the 800,000 who were given the Pandemrix injection have this condition. It is quite hard to assess the number of young people and teenagers, in particular, who have this condition because many of the symptoms are often misidentified as hormones or changes in the lives of teenagers and young people. It is quite hard to quantify the number of people it affects. What we can say is for those who are diagnosed it is a very serious condition. Without help or treatment, those who are affected by it can have greatly reduced potential in their own lives. There are no cures but things can be made more manageable. One of the only true ways of diagnosing it is through a multiple sleep latency test, which must be done in a special overnight sleep test facility. Currently, there is only a handful in Ireland, with the Mater Hospital being the most used. There is no public sleep centre in Ireland. For people under 16, Temple Street hospital is often used. We are unique in Europe in that we are the only country without such a facility. Such a facility was committed to as far back as 2012. Funding was pledged for it. As such, I am bringing forward this Topical Issue to ascertain exactly where we are on that. It is my understanding that critical decisions are being made now on the allocation of budgets.
I have a few specific questions. Is the funding still in place? When will the project proceed? Are there timelines in place for its delivery? Has hiring of the specialists who will be needed for such a facility commenced? I understand that a leading expert in this area, Dr. Catherine Crowe, is involved in this and she has said there is a clear link between the Pandemrix vaccine and the condition. She and a great many others who are involved, and even people such as Mairead McGuinness, MEP, have highlighted the urgent need for Ireland to bring about this facility, fund it and to address this important problem. I would appreciate if the Minister of State would give me an update on that.
I thank Deputy Rock for giving me this opportunity to update the House on this very important issue. Narcolepsy is a chronic brain disorder and people with this disorder experience periods of extreme daytime sleepiness and sudden, irresistible bouts of sleep that can strike at any time. These sleep attacks usually last from a few seconds to several minutes.
I acknowledge the impact on the 1,500 to 1,600 patients with narcolepsy in Ireland. Narcolepsy can greatly affect daily activities. People may unwillingly fall asleep while at work or at school, when having a conversation, playing a game, eating a meal or, most dangerously, when driving or operating other types of machinery. In particular, I am aware of a specific group of individuals who claim to have developed narcolepsy as a result of receiving the Pandemrix vaccine during the 2009 influenza pandemic. Many of this group were children at the time of their diagnosis.
As many of the patients are now becoming adults, there have been calls from advocacy groups recently for the setting up of a centre of excellence for narcolepsy based in St. James's Hospital, which would include a nurse specialist, a dietary service, a psychological service and a full service between St. James's Hospital and the children's hospitals.
A business case for a service for adults with narcolepsy was submitted by St. James's Hospital as part of the overall 2017 Estimates process. St. James's Hospital is part of the Dublin Midlands hospital group. Any proposals for the funding for the narcolepsy clinic in St. James's Hospital have to be considered as part of the hospital group's overall priorities for services across the group and with regard to resources available. While no developmental moneys have been allocated for this proposal in the HSE's national service plan for 2017, I understand that work is under way on the proposed centre of excellence.
It is a priority for the Department of Health and the HSE that the individuals and families affected by narcolepsy receive appropriate health and social care supports. Therefore, my Department engaged with the HSE, the Department of Education and Skills and the Department of Social Protection to ensure the provision of a range of services and supports on an ex gratiabasis.
The HSE's advocacy unit acts as a liaison with other service providers and Departments to facilitate access to required services. It is in regular contact with the individuals affected. Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services.
The ex gratiahealth supports include clinical care pathways to ensure access to rapid diagnosis and treatment; multidisciplinary assessments led by clinical experts; counselling services for both the individuals and their families; discretionary medical cards for those who have been diagnosed to allow unlimited access to general practice care and any prescribed medication; ex gratiareimbursement of vouched expenses incurred in the process of diagnosis and treatment; and physiotherapy, occupational therapy assessments, dental assessments and dietary services all on a needs basis.
I again acknowledge the impact on the lives of these people and their families affected by narcolepsy and reiterate my commitment to the ongoing provision of appropriate services and supports.
I thank the Minister of State for addressing these concerns. I know that, like myself, she cares about those who are affected by this condition and that she places a great deal of emphasis and importance on resolving this issue. Even though this condition affects a relatively small number of people, it has had a serious impact on their lives. As the years are progressing and as these people are getting older, we are beginning to see how it has a deep impact on their lives.
I welcome the Minister of State's response. I am grateful that progress is being made. I would like to see more progress being made throughout the year. I would appreciate if I could be kept updated on this matter because it is an important one for the families to whom I have spoken. I will speak to them again having got the Minister of State's response and I hope they will be satisfied also. I believe we are making progress on this important matter. If the required level of progress is made, I will be delighted with that, but if it is not, I will be happy to raise this issue again in the future.
I know the Deputy, like myself, would welcome the fact work is under way on the proposed centre of excellence. I do not have the level of detail on the timelines that the Deputy asked for, but I will be happy to provide him with that separately.