Confusion over support for sleep disorder patients

Parents of children who developed a chronic sleep disorder after taking part in a State vaccination programme remained fearful last night that they could be forced to pay for out-of-pocket expenses despite reassurances from the HSE.

SOUND, the lobby group that represents the families, said statements from the HSE and the State Claims Agency appeared to contradict each other in terms of what expenses would be met by the State in the future.

The confusion arose after two women affected by narcolepsy went to the High Court yesterday seeking a judicial review of a HSE decision to end payments in respect of “any ongoing or future expenses incurred” associated with such a diagnosis.

This decision was communicated to the women — Aoife Bennett, of Lakelands, Naas, Co Kildare, and Samantha Atkinson, of St Brendan’s Terrace, Tibradden, Rahtfarnham, both in their 20s — in a letter from the HSE dated Nov 20 last and signed by its head of advocacy, Greg Price.

In the letter, Mr Price said the decision had been taken on foot of advice from the State Claims Agency in light of the fact that the women had instigated legal proceedings against the HSE and the health minister.

However, HSE director general Tony O’Brien said he was unaware of the letter until yesterday morning and said it would be set aside.

In a statement last night, the HSE said he had given a direction that medical supports and services “will not be withdrawn for this category of narcolepsy sufferers”. The statement said he apologised “if the letter issued has caused any distress or upset to any person, family or group”.

Mr O’Brien’s direction is at odds with the routine approach taken by the SCA in the case of individuals suing the State. As the SCA pointed out in a statement yesterday, this includes ending ongoing out-of-pocket payments to such individuals. Instead, “as happens in every comparable litigated case”, those suing include these expenses as part of any special damages claim.

SOUND spokeswoman Mairéad Lawless said her group was seeking clarification on the matter as out-of-pocket expenses were not specifically mentioned in the HSE statement, which referred to “medical supports and services” not being withdrawn.

She said Mr Price had confirmed to SOUND chair Mary Fitzpatrick last night the SCA had advised it to stop paying such expenses. “However, he said the HSE has decided to ignore this advice and they will continue to pay the expenses.”

Following yesterday’s developments, the judicial review was put on hold with permission to re-enter.

Meanwhile, Fianna Fáil health spokesman Billy Kelleher called on Health Minister James Reilly to clarify if he had a role in the issuing of the Nov 20 letter.

Mr Kelleher said the families of those suffering from narcolepsy after receiving the Pandemrix swine flu vaccine would incur significant financial costs if their medical expenses were not met by the HSE.

“The sleep disorder has a major impact on the patient’s daily life and the minister and the HSE must bear this in mind at all times.”

Mr Price told SOUND that families who received the Nov 20 letter wouldreceive letters today confirming that expenses would continue to be reimbursed. Up to six families were affected.

Up to 60 children and a number of adults were diagnosed with narcolepsy in Ireland after taking Pandemrix in 2009 and 2010.

A report for the Department of Health, published last year, found that the risk of narcolepsy was 13 times higher among those given the vaccine, compared to unvaccinated individuals.