The HSE initially refused Gráinne O’Connor, 27, from Shanagarry, Co Cork, permission to seek treatment abroad on the basis that the “appropriate services” were available in Beaumont Hospital.
However, the HSE was forced to reverse its decision on foot of negative publicity when the Irish Examiner highlighted Ms O’Connor’s plight and the fact that “appropriate services” are not available in Ireland.
While there are two units — one at Beaumont and another at Cork University Hospital — equipped to carry out the kind of specialist monitoring Ms O’Connor requires, neither is open because of a lack of money to staff them.
Yesterday, she flew to London with her mother Attracta, to meet with Prof John Duncan, a consultant neurologist specialising in epilepsy, in the first step of a process she hopes will lead to better-controlled epilepsy and improved quality of life.
Ms O’Connor, who is blind, met Prof Duncan at the National Hospital for Neurology and Neurosurgery, Queen’s St, London, for interview. She hopes to be sent shortly for specialist testing which will help determine if she is a suitable candidate for surgery. When successful, surgery can reduce the rate of seizure from daily attacks to none.
Her father Tom said he was delighted his daughter had finally been given the opportunity to access services what could lead to life-changing treatment.
“We are thrilled that it’s finally getting off the ground.”
The tests Ms O’Connor requires are a form of telemetry monitoring known as video EEG monitoring. Mr O’Connor said the hope is that his daughter will spend at least three weeks in an epilepsy monitoring unit. The units are a safe environment in which to observe seizures round the clock, with a view to helping make a definitive diagnosis, helping identify which part of the brain seizures are occurring in, and whether a patient might benefit from surgery.
There are more than 250 people on waiting lists for the units at CUH and Beaumont. The units are part of the HSE’s national epilepsy clinical care programme and were refurbished at a cost of almost €1m.
Ms O’Connor’s consultant neurologist at CUH, Dr Daniel Costello, has said that referral of people with epilepsy to an international epilepsy centre for tests that can be done in Ireland will cost approximately €20,000 per person.
There are 40,000 people with epilepsy in Ireland, of whom 30% have difficulty controlling epilepsy and would stand to benefit from the monitoring units.