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

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.

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