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Dublin: 10°C Wednesday 20 October 2021

HSE U-turn on funding for epilepsy sufferer 'insulting'

Gráinne O’Connor, 27, had originally been declined funding by the HSE, even though her required treatment is not available in Ireland.

File photo
File photo
Image: Eamonn Farrell/Photocall Ireland

THE FATHER OF epilepsy sufferer Gráinne O’Connor, 27, has called the HSE’s U-turn on treatment for his daughter “insulting” after what he described as a “horrendously long” wait.

Speaking on Newstalk Breakfast this morning, Tom O’Connor read out the letter that Gráinne had received in response to her appeal for funding to receive telemetry testing in the UK.

“I just love the way they word all these things,” he said, outlining the fact that although the letter said that the HSE’s decision to decline the funding was “correct and is upheld”, it went on to say that she would be funded on a once-off basis due to her “specific clinical circumstances”.

Responding to the way in which the concession was made, the girl’s father said that it was “insulting”.

The whole idea is to deflate you totally and then tell you what a great organisation the HSE is, and that they are magnanimously going to provide what they don’t have to provide, and also I may point out that what they are providing is a treatment abroad.

Grainne’s application for funding under the treatment abroad scheme (TAS) had initially been denied, despite the fact that epilepsy monitoring units are shut in Ireland.

“All the equipment is there and sitting on the shelf, but the staff are not,” Tom said.

What is wrong with them opening up the units and staffing them? How much is this going to cost them? If people are as able as I am to fight for my daughter, and they get what I’ve gotten for my daughter, how much is it going to cost them? How much embarrassment is it going to cost them? It just doesn’t make sense.

Plans are still to be finalised regarding her travel abroad for the telemetry testing, which will involve the withdrawal of her medication in order to induce a seizure, at which point doctors will attempt to determine where in her brain the damage is.

“Ultimately she’ll have to have brain surgery, if possible,” her father said.

Read: 20% of people would not employ someone with epilepsy – survey >

More: Column: My son has epilepsy and stigma still surrounds the disease >

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Paul Hyland

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