Midlands’ narcolepsy patients are waiting one year for an appointment in Dublin

Narcolepsy is a chronic sleep disorder with a range of very serious effects and symptoms and is often accompanied by a form of cataplexy, where a person’s muscles temporarily lose some or all of their strength, or their ability to function.

According to Narcolepsy Ireland, the most severe form of cataplexy results in the person totally collapsing and being effectively temporarily paralysed for periods ranging from as short as a split second or as long as several minutes.

Independent Deputy Carol Nolan has said she engaged with the HSE and the Minister for Health Stephen Donnelly on the matter after being contacted by parents and grandparents within her constituency who are increasingly concerned by the lack of access to diagnostic and support services for their loved ones.

Deputy Nolan also requested an update on the availability of compensation to persons diagnosed with vaccine related narcolepsy and cataplexy, the number of payments made to date and the number of claims outstanding or still in the process of mediation.

“While organisations such as Narcolepsy Ireland provide wonderful support and information, this must be matched by a greatly improved pathway toward medical and diagnostic assessments within the health service itself.

“At present this is not happening, with patients routinely waiting a year before they are even seen by the team at St James’s,” said Deputy Nolan.

“This is not ideal given that episodes of narcolepsy, as I understand it, can be linked to stressful or highly charged emotional situations.

“In terms of the availability of compensation to persons diagnosed with vaccine related narcolepsy and cataplexy, I am informed by the Minister that the management of cases taken by persons who claim they developed Narcolepsy and, or Cataplexy as a result of receiving the H1N1 vaccine, Pandemrix, is delegated to the State Claims Agency (SCA).

“I am also informed that following the settlement of a precedent case through mediation in November 2020, the SCA established a Scheme of Settlement for the other claims on similar terms to those agreed in that case.

“I am told that settlement of claims under that Scheme are progressing, with 153 people having entered into the Scheme by 11 April 2024.

“Of the claims received, 95 claims have been finalised with 58 claims currently active. Payments for damages have been made in respect of 129 claims as of April 11, 2024.

“The Minister also confirmed to me that his Department is currently working to develop a model for a vaccine damage scheme and that once the model is developed, it will be submitted for his consideration,” said Deputy Nolan.