Children who developed narcolepsy after receiving the swine flu vaccine are facing exams with no supports in place, it has emerged.
Campaign group Sound (Sufferers of Unique Narcolepsy Disorder), which represents 40 children it believes have been affected, is concerned that their needs are not being taken seriously.
Sound member Máiréad Lawless, whose six-year-old son Alex, developed the disorder after vaccination, said the group would escalate its campaign if no action was taken.
Ms Lawless raised the issue in an email to Health Minister James Reilly on Wednesday. “I know from our meeting with you [Dr Reilly] last September that you were most supportive and agreed that our children were to get the supports they required,” she wrote.
“Unfortunately, this has not happened yet.
“We the parents have been very patient to date. However, I cannot emphasise enough how distressed we are at this stage with the lack of progress.”
The minister, who was questioned about the matter yesterday, agreed that the children should have the supports they needed to do their exams. Dr Reilly said he would meet the group but wanted to wait until he had a report from the Department of Education on its view on the issue.
He said the chief medical officer would be meeting a senior official from the department to progress the matter.
Dr Reilly said it was very important the children got the supports they needed as quickly as possible.
“I know parents are worried and I know children have enough on their plate without this additional burden and we will do what we can to support them. I am as anxious as anyone to have this matter expedited,” he said.
Dr Reilly also said it was hoped that an expert report on a possible link between narcolepsy and the swine flu vaccine would be published early next month.
He said the report by the Health Protection Surveillance Centre, which is part of the HSE, was given to the Department of Health last month.
Dr Reilly said he planned to bring a memo to Government soon on the report for a decision.
Ms Lawless said they were very concerned that the findings had not been made available to the parents of children whose medical records were given to the surveillance centre.
“The report is a gathering of statistical data and we can’t understand why it is taking so long to release it to the parents — it is about our children,” she said.
Ms Lawless said they could only assume that the report was being examined from a legal point of view before making all or just part of it public.
She said parents wanted to meet the minister within two weeks and their main concern at this stage was about the children who would be sitting exams this year.
Ms Lawless said there had already been a meeting between the group and officials from the Department of Education at which details about the children’s schools were supplied.
She said they would be happy to meet Dr Reilly but would be looking for specific commitments from him in getting their children’s educational needs looked after.
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