WHEN you suffer from a rare disorder that affects all your major organs — the heart, lungs, stomach, bowels, joints, muscles and the immune system — life is a constant battle.
But somehow, Midleton woman Amy Foley has managed to find the energy to fight another battle — with the authorities — over the payment for treatment abroad for people like herself.
Last month, the 30-year-old’s fight ended with victory when the Ombudsman Peter Tyndall called on the Health Service Executive to change how it administers the Treatment Abroad Scheme (TAS) because it is too complex and difficult for patients to access.
For Amy, it was a proud day as the Ombudsman’s two-year investigation into the administration of the HSE scheme was prompted by 19 complaints, including her own.
“I can only say that my campaign to get vital treatment abroad, in the UK, has been traumatic,” said Amy, who is to be partially reimbursed for the treatment by the HSE.
“To have to fight against administration to get the treatment you need — it’s heartbreaking.”
For Amy, the campaign has even meant changing her name — from Aimee to Amy — to make it easier to manage all the correspondence and form-filling she has had to do.
Amy, who suffers from a rare tissue disorder called Ehlers-Danlos-Syndrome, (EDS), added: To have the Ombudsman’s document and see the report in my hand is really going to change the lives of others going forward.
“That is worth everything that was so difficult for me.
“I am pleased that the HSE have acknowledged my case and have acted on the recommendations of the Ombudsman.
“I therefore will receive partial reimbursement for medical costs incurred by me which will be invested towards my future medical costs in the UK.”
Amy added: “I believe in standing up for myself and for people who are in the same position as me, so I have to try and highlight the plight of people with rare diseases.
“It was not easy to keep momentum going in the background, but I have always been true to what my human rights were and are: to have access to medical services in the UK that are not available in Ireland.”
Amy is proud that all her efforts have come to fruition.
“In 2013, I was looking down two paths,” says Amy, recalling the start of her EDS journey.
“One path had light at the end of the tunnel. The second path I was already on. It was a path of disability, no quality of life, poor healthcare, a long list of misdiagnoses, and countless hospital admissions. I was deteriorating rapidly.”
Professor Rodney Grahame, consultant rheumatologist in St John’s and Elizabeth Hospital in London, advised Amy that use of the hyper-mobility unit at the hospital was the quickest route to vital treatment.
“Professor Grahame told me to go back home to Ireland and campaign outside the Taoiseach’s office, I took the advice seriously,” says Amy.
“I knew I had to find a way to get the treatment and intervention that was essential. I publicly shared my journey as well as my public appeal.”
Thousands of people supported Amy, knowing that dealing with a life-changing diagnosis was enough for the young woman to contend with, never mind an added burden of bureacracy.
“It is more than fair to say that each and every single person that organised, volunteered and contributed to help my treatment fund are the only reason that I got the healthcare that I so desperately needed,” says Amy.
“It is because people fund-raised, coupled with my determination to live and fight, that I am in the position I am today.
“The Ombudsman’s report is very important to people in general who have to access treatment abroad that is not available here.”
Amy’s loved ones were always in her corner and went with her on the road.
“My mother, Deirdre, has always been there for me and she has always supported me. Mam is by my side wherever I go,” said Amy.
“The trips to the UK, when I attended three hospitals, proved tiring and stressful.
“My fiancé, Stephen has always been with me through thick and thin. He sees beyond that this is for life.
“My multi-disciplinary medical team in Cork are hugely supportive. Now they can liaise with my team in the UK with less administration involved which is a relief. The doctor/patient directive is much clearer. It is a step forward”
Stephen has brought Amy on another road.
“Yes, I learned to drive at the age of 30!” says Amy, smiling.
Amy is bright-eyed and enthusiastic. “That’s one of the things with EDS,” she says. “You can look like this and nobody
there is anything wrong with me.