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U-turn on funding for epilepsy sufferer ‘insulting’

DENIS grainne 1.jpgEpilepsyU has been following this story in Ireland.  Here is a follow-up.  Is this the future of healthcare?  We wish them luck. The “U”

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

Speaking on Newstalk Breakfastthis 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.

Source: The Journal

In a bizarre letter, the HSE told Gráinne O’Connor 27 that even though she failed to meet the criteria for funding under their treatment abroad scheme (TAS), they were going to fund her treatment abroad anyway.

In addition, the office that administers their TAS would also do the administrative work in her case.

The letter from Pat O’Dowd, HSE assistant national director, stated that Ms O’Connor’s case was a “once-off funding arrangement — outside the parameters of the treatment abroad scheme”.

In fact, Mr O’Dowd began his letter to Ms O’Connor with bad news after reviewing her case, saying: “I regret to inform you that the decision to decline your application was correct and is upheld. Your application and subsequent appeal do not meet the criteria of the TAS as previously outlined.”

However, having considered Ms O’Connor’s “specific clinical circumstances”, Mr O’Dowd said the HSE was prepared to fund the cost of video EEG monitoring at the National Hospital for Neurology and Neurosurgery in London.

Ms O’Connor, who has poorly controlled epilepsy, is considered a likely suitable candidate for surgery by her consultant neurologist. However, she could not get the required monitoring here because funding shortages have kept the two epilepsy monitoring units in Cork University Hospital and Beaumont Hospital, Dublin, closed.

Despite these closures, the HSE had told Ms O’Connor, from Shanagarry, Midleton, Co Cork, to “seek the appropriate services in Beaumont”. Her initial appeal was refused on the grounds it arrived outside deadline despite being delayed in the Christmas postal rush.

Source: The Irish Examiner

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