Colm Keaveney (Galway East, Independent)
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I thank the Office of the Ceann Comhairle for the selection of this topic.

On 19 April, a report entitled "Investigation of an increase in the incidence of narcolepsy in children and adolescents in 2009 and 2010" was prepared by the Department. The report was supported by the Health Protection Surveillance Centre and was published by the chief medical officer, Dr. Tony Houlihan, on behalf of the Minister, Deputy James Reilly. The report found that there was a significant 13-fold higher risk of narcolepsy among the vaccinated compared to those who were not vaccinated. The Minister for Health gave a commitment to Sufferers of the Unique Narcolepsy Disorder, SOUND, the organisation that represents families affected by narcolepsy. The Minister then gave a commitment to the families affected that a package of supports would be brought forward by the Government before the summer recess of 2012. It is a year since the report was published. Children and young adults who have developed narcolepsy as a result of the administration of Pandemrix have no permanent support package in place despite the Minister's commitment.

SOUND, the organisation representing the families affected, is concerned that the Minister is refusing to engage with it to design a package to respond to the needs of the families devastated by the effects of the symptoms of Pandemrix, which can have serious consequences for the welfare of the family and individual concerned.

It is important to note at this point that the Pandemrix vaccination was given as part of a State programme. Having listened to the testimonies of the families affected, I understand there are four main symptoms and effects of narcolepsy, including extreme sleepiness, muscle weakness while awake, hallucinations and sleep paralysis. Many of the young people affected are due to sit State examinations this year. These young adults are without the capacity to control their bodies and are sleeping up to 20 hours a day, which means they may not be able to sit their examinations. Parents often have to leave their place of work to babysit their young adult children as a consequence of the symptoms of the Pandemrix vaccination.

I invite the Minister of State to comment on the Department's plans to engage with SOUND on behalf of those affected by Pandemrix. Can we expect, this side of the summer recess, an engagement with this organisation that will put a construct on the needs of the individuals involved so that they can have a realistic opportunity of support from the Department and avail of all of the services available in situations comparable to this?

Kathleen Lynch (Cork North Central, Labour)
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I am replying to this topical issue on behalf of the Minister for Health, Deputy Reilly. While the reply does not give an assurance in regard to a meeting, the Deputy can be assured that I will bring that request to the Minister as soon as I leave the Chamber. I thank the Deputy for raising this matter as it provides us with an opportunity to outline to the House the importance of the issue raised.

At the Minister's request, a number of specific services have been put in place in response to the health needs of those affected by narcolepsy following Pandemrix vaccination. Specifically, the Health Service Executive advocacy unit acts as a liaison for those who require access to services and supports, medical and educational. A network of countrywide liaison officers has been set up to allow a single point of contact for affected families and provide a focal point for service access across all Departments. The HSE issued an awareness notice to all medical professionals to highlight the risk of an increase in incidents of narcolepsy and to identify all possible cases. Narcolepsy active case finding was undertaken by the HSE by its contacting all sleep clinics, neurologists, paediatricians, general practitioners, psychiatrists, psychologists and public health nurses. A further follow-up awareness letter also issued to health care professionals and GPs.

The Minister is advised that every possible measure is in place to ensure rapid diagnosis, with the Mater hospital sleep clinic providing a six-day service, including Saturdays, to facilitate those for whom a possibility of a diagnosis of narcolepsy exists. The Minister has also been reassured by the HSE that anyone who has a confirmed diagnosis of narcolepsy is fast-tracked through the system to ensure that required services are provided in the earliest possible timeframe. Reimbursement of expenses is ongoing. Temporary medical cards have been issued. The HSE advocacy unit is also in regular contact with SOUND and last met with representatives of the group on 28 February this year.

I understand that an information day was hosted by the HSE on 22 March to inform those affected by narcolepsy following Pandemrix vaccination of a range of services and supports available to them. This included information on the allowances available, which are administered by the Department of Social Protection, to those who fulfil the eligibility criteria. Consultants in sleep medicine from the Mater private and the Children's University Hospital, Temple Street, made presentations and answered questions at the information day. These consultants have ongoing access to international expertise and are experts in the field of sleep disorder. HSE staff and representatives from SOUND also attended the information session. Educational assistance is available through the Department of Education and Skills. A single point of contact for the Departments of Education and Skills and Social Protection is available through the HSE advocacy unit to assist service access.

Every possible effort is being made to provide ongoing individualised supports and services to those affected by narcolepsy following Pandemrix vaccination. I assure the Deputy that the Minister's priority and that of the Department remains that the health needs of those affected by narcolepsy following Pandemrix vaccination continue to be appropriately addressed. There is no getting away from the fact that the families involved find themselves in a very difficult situation.

Colm Keaveney (Galway East, Independent)
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I thank the Minister of State for her response. I would like to make a number of brief points. The Minister of State referred in her response to the provision of temporary medical cards. This is not a temporary situation.

Kathleen Lynch (Cork North Central, Labour)
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No.

Colm Keaveney (Galway East, Independent)
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This is a profound medical challenge for many families who have a number of grave concerns that need to be responded to by the State. The Mater clinic to which the Minister of State referred is a private clinic.

Kathleen Lynch (Cork North Central, Labour)
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Yes.

Colm Keaveney (Galway East, Independent)
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There is a cost for that service. There is no public sleep clinic in the country. In terms of access to service for people, this in itself is a barrier to those affected securing the best possible outcomes.

I am delighted that the Minister of State, Deputy Lynch, is in the House today. There is a requirement to also consider the recognition of narcolepsy as a disability in that many of those affected believe they will be discriminated against in the workplace as a consequence of either of the variables of the symptoms, be it muscle weakness, hallucinations or paralysis.

Some of the testimonies from SOUND, in terms of our requirement to address this issue, transcend health. Many of the young adults affected have special educational needs. Some of them hope to go on to third level education. We need to consider putting in place support measures in this regard. Younger children affected also have special educational needs and require the support of special needs assistants to get safely through their day in the education system. I have heard reports of adults having to give up their jobs to care for their young adult children as they cannot be left alone to shower, have a bath or shave in their own domestic environment as a consequence of this situation. What is required is a hands-on engagement on the part of the Minister and the Department, and, perhaps, a cross-departmental group to address the catalogue of concerns of families in regard to this crisis. I appeal to the Minister of State to follow up this matter with the Minister to ensure there is engagement this side of the summer recess with the families affected to ensure their needs as a consequence of this unforeseen situation are catered for.

Kathleen Lynch (Cork North Central, Labour)
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The issuing of temporary medical cards is not to indicate that there is an expectation that this situation will go away tomorrow, the following day or even next year.

It is a mechanism by which medical needs can be met in an urgent fashion. No one is saying otherwise. Even if there is recovery from narcolepsy it will not happen this year or next, although I suppose we do not know that.

With regard to diagnosis and treatment in sleep clinics, there is no charge, and any charge applied will be reimbursed. It is essential that people know that. We are talking about a small group of people. There were 48 confirmed diagnoses of narcolepsy with an onset of symptoms following the Pandemrix vaccination. The Deputy is right in pointing out that the majority of these cases are in children or adolescents. Further possible cases are being investigated by both the Irish Medicines Board and the HSE.

One of the demands - I do not like to use the word "demands" because we have had good engagement up to this point, and I hope that will continue - is for the development of a national centre for narcolepsy treatment. That is under active consideration by the HSE and moneys have been set aside for the development of such a centre this year. Irrespective of whether the clinic providing the service is private or public, there is a reimbursement scheme in place for people who have to pay for treatment. I will convey to the Minister the concerns in regard to a package and the matter of a possible meeting. I cannot give guarantees in respect of those here but I clearly hear what the Deputy is saying.