I am pleased that the mediation process was successful in the recent case relating to the administration of the Pandemrix vaccine during the 2009 H1N1 influenza pandemic and that the parties have been able to come to a resolution without the necessity to continue with legal proceedings.
In October 2013, the Government approved (S180/46/01/0005B) the delegation to the State Claims Agency (SCA) of the management of claims in relation to individuals alleging the development of narcolepsy resulting from the administration of the pandemic vaccine. The management of the cases transferred to the SCA when the National Treasury Management Agency (Delegation of Claims Management Functions) (Amendment) Order 2013 (S.I. no 405 of 2013) was signed by the then Taoiseach on 15 October 2013. As such, I have no role as regards the conduct of this or future cases, including as regards the issue of costs relating to them.
However, the Programme for a Partnership Government includes a commitment to “…put in place a scheme, on a no-fault basis, that will respond to the needs of people with disability arising from vaccination" and work is progressing with regard to this. An Expert Group was established in June of last year, under Judge Meenan, to examine the law in relation to personal injuries arising in the healthcare context and to explore alternative mechanisms by which claims could be managed more effectively, particularly from the perspective of the person on whose behalf a claim has been made. A report from this Expert Group is expected in the coming weeks, the recommendations of which will be taken into account as part of the development of a vaccine compensation scheme.
In addition, the Health Research Board recently completed a review of the evidence on vaccine injury redress programmes in other jurisdictions and this report will also be considered in conjunction with the Expert Group’s recommendations.
Since 2012, the Department of Health, the HSE, and the Department of Education and Skills, and the Department of Employment Affairs and Social Protection have worked together to provide a wide range of services and supports for those affected. The HSE’s Advocacy Unit acts as liaison with service and support providers and other Government Departments to facilitate access to required services. It is in regular contact with individuals affected and regularly meets with representatives of SOUND (Sufferers of Unique Narcolepsy Disorder). Regional co-ordinators have been appointed to assist individuals by providing advice, information and access to local services.
The ex-gratia health supports include:
- clinical care pathways to ensure access to diagnosis and treatment;
- multi-disciplinary assessments led by clinical experts;
- counselling services for both the individuals and their families;
- discretionary medical cards for those who have been diagnosed;
- physiotherapy and occupational therapy assessments.
Treatment and individual medical needs are reassessed over time to take account of changes in their condition or circumstances.
In conjunction with the above, a centre of excellence for narcolepsy (based in St. James’s Hospital) for treating all forms of narcolepsy in adults as well as children transitioning from paediatric services has been in development. A sleep lab is now complete at this facility, with equipment installed and commissioned. Additional sleep technicians have also been recruited. The sleep lab has opened and completed its first sleep studies in July 2019. Sleep studies are now continuing on a regular basis. A consultant neurologist with specialist interest in sleep medicine and two consultant respiratory physicians with specialist interest in sleep medicine have been appointed. They have all commenced their full-time positions and are seeing narcolepsy-related referrals in the clinic. A dietician has also joined the service as part of its multidisciplinary team.