A father whose daughter has severe epilepsy has asked the health watchdog to investigate the HSE’s refusal to allow her travel abroad for treatment not available here.
Tom O’Connor has written to the Health Information and Quality Authority (Hiqa) asking it to examine why his daughter Gráinne, 27, must remain indefinitely on a waiting list for crucial tests that are not available here, while the HSE continues to claim that they are.
Beaumont Hospital in Dublin and Cork Univ-ersity Hospital (CUH) would be in a position to offer the tests but for the fact that their two epilepsy monitoring units remained closed in the absence of funds to staff them.
Despite these ongoing closures, the HSE, in refusing permission to Gráinne to travel abroad, told her they were turning down her request on the grounds she could seek access “to the appropriate services at Beaumont”.
In his letter to Hiqa, Mr O’Connor wrote: “I would request that Hiqa would investigate this situation, where a person is refused necessary treatment for a significant and potentially life threatening illness on the basis that the equipment is available (though not the qualified staff), therefore the treatment is purportedly available (just not at the moment), and a patient must continue on a waiting list pending the lifting of a staff moratorium for an undefined period of time without due consideration of their health”.
A spokesman for Hiqa said it had received Mr O’Connor’s letter and was “looking into it”.
The HSE is re-considering an appeal into its refusal to allow Gráinne travel for treatment. Her initial appeal was unsuccessful on the grounds it arrived outside the deadline — after being held up in the Christmas post. The HSE relented on foot of adverse publicity and said it would take another look at her appeal.
On Feb 1, HSE assistant national director Pat O’Dowd said in a letter he was reviewing her application and hoped “to be in a position to reach a determination on your appeal in the course of next week”.
Gráinne, from Shanagarry, Co Cork, has been blind since birth and has poorly controlled epilepsy, putting her at risk of sudden unexpected death. Her doctors have written to the HSE in support of her receiving the crucial tests as soon as possible.
In Feb 2011, her consultant neurologist Dr Daniel Costello wrote to Mark Mulrooney, the senior clinical neuropsychologist at the department of psychology in Beaumont, saying he was “referring her earlier than is typical” as he believed Gráinne’s case “might take more work and time than usual” because of the part of her brain in which the epilepsy was occurring.
Two years later, Gráinne is still waiting for the tests she must have before any decision can be made as regards future surgery.
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