Aimee Foley, 26, from Riversfield, Midleton, East Cork, applied in June for funding to travel to London for a formal diagnosis of a rare genetic connective tissue disorder known as Ehlers Danlos Syndrome.
Her initial application under the HSE’s Treatment Abroad Scheme was rejected on the grounds that the form — which she downloaded from the TAS website — was out of date. A fresh application was also rejected but Aimee did not discover this until she had already left for London to meet with a specialist.
Aimee’s mother Deirdre said they contacted TAS by telephone on the eve of their departure because they had not received a response to her application. This was despite the fact that TAS was aware of the timing of Aimee’s travel date — a TAS application cannot be completed without a date from the hospital abroad.
Deirdre said a TAS administrator told them information on approvals or refusals could not be given out over the phone. “We were told we had to wait for the letter,” Deirdre said.
The letter had not arrived by the time mother and daughter departed. Two days later, they received a refusal.
The TAS response said Aimee’s application was referenced as “seeking a second or specialist opinion abroad” and that TAS did “not have a remit” to fund specialist opinions.
The doctor who assessed her in London, consultant rheumatologist Rodney Grahame, wrote to Aimee’s GP saying that, because she does not have health insurance, “it will be essential for her treatment to be funded by the state”.
Prof Grahame also said that, should a programme for specific EDS patients not be available locally, another solution would be to refer her “via the NHS” to a specialist rehabilitation unit in Middlesex.
However, Aimee said obtaining treatment via the NHS would mean another nine-month delay. In the meantime, she said her quality of life continues to deteriorate. She suffers from, inter alia, partial dislocation of joints, bouts of acute pancreatitis and migraines, asthma, low blood pressure, and fatigue. Some of her meals must be liquidised.
When asked why Aimee was turned down for funding, the HSE said it “cannot comment on individual cases”, but that if a patient was not satisfied with the outcome of their application “they are advised of their right to a review of the decision under the appeal process”. Aimee said she received no such advice.
Aimee’s case has been raised in the Dáil by her local Fine Gael TD, David Stanton, who asked Health Minister James Reilly what services are available here for those with Aimee’s condition.
Dr Reilly said his department was “developing a rare disease plan” which will be finalised later this year.
* For more on Aimee’s campaign, log onto www.facebook.com/IrelandWakeUpSeeTheStripes.