I took a stand for myself and others like me... it’s been a heart-breaking battle

Cork woman Amy Foley, who has a rare debilitating illness, has just been involved in a campaign that led to the Ombudsman calling on the HSE to change its policy on patients being treated abroad. She tells CHRIS DUNNE about her reasons for fighting.
I took a stand for myself and others like me... it’s been a heart-breaking battle
Amy Foley relaxing at her home in Midleton, Co Cork.Picture: David Keane.

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.”

Amy Foley.
Amy Foley.

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.

“I was 30 last February and I learned to drive in May. I practice driving when my condition is stabilised to some degree. Driving is a necessity, energy wise. Moving the weight of my body is very physical and saps my energy.”

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.

“Once, I believed I’d never drive a car when I was misdiagnosed with epilepsy.”

“I wanted to travel and work towards a promising career.

“I had been treated for pancreatic disease, for gastro-enteritis and rheumatoid problems, all to no avail.”

EDS is so rare, that very little knowledge or research in the disease had been explored. Amy was diagnopsed with it five years ago, in May, 2013.

“With the diagnoses came relief, but also a sense of being over-whelmed with the implications that the disease was progressive, that there was no treatment for it in Ireland, that Stephen and I would have to think long and hard about planning a family in the future, and that my life would always contain a question mark over my capabilities.”

Crucially, she has a positive outlook on life.

“I could live the life of an invalid but I don’t. I work three days a week in the Hazelton Clinic in Douglas. It is a great place to work and I love it. The team there are tremendously supportive.”

They realise the effort Amy must put in every day to go to work, something many of us take for granted.

“Like everyone, I’d love that extra hour in bed,” says Amy.

“My regime is very strict. I get up at 5.15am to take my medications, and take time to eat and swallow my food. This is becoming increasingly difficult in recent times.

“The night before I go to work I prepare everything from scratch. My medical regime is scary. When I can’t eat or absorb essential nutrients, I take more medications than food. It is hard to get the balance right.

“I get the bus to Cork from Midleton at 7am then a connecting bus to Douglas, starting work at 8am.

“I write a plan two weeks ahead, organising my medications and consultations.

“Sometimes I am in hospital a lot, or in the UK a lot, but when I am at work, I give it my all. I am totally present at work.”

Is travelling to the UK for treatment a big part of her life?

“If I didn’t go to the specialists in the UK. I wouldn’t be able to work. I wouldn’t function. I would have spent years here, like the last six, getting sicker and more immobile. My case worker at the office of the Ombudsman truly encouraged me to keep going and the result was the best gift.”

Today, when I meet her, Amy’s ribs are sore. She has a hot drink, but a scone or a piece of toast is a no-no.

“I frequently get flare-ups,” says Amy. “They settle down and you get used to a new normal. My health has suffered a series of setbacks, but I have very good spells too, which I live for.”

Why are her ribs paining her?

“It could be something as simple as opening a door, or a carrying a bag on my shoulder,” says Amy. “If I moved in bed: that could be the cause of dislocating my rib-cage.”

Amy puts in the work necessary to get what she wants and what she is entitled to.

“I have a good outlook to focus on for a better quality of life,” she says.

“I know the hard times and I know the prognosis. There is no cure for EDS. But I do everything I can to get on with life.

“I do my exercises every day, using a gym ball and a cross-trainer. The exercise is good for my circulation and for my heart. I do Pilates and yoga. I go to the gym and work out. I like it.”

What else does she like?

“I love my job. It is a new lease of life and very rewarding. I like going to the cinema and going out to eat in the few restaurants that can accommodate all my allergies.”

Amy often wants a day away from her illness.

“Yes, there are days you want to come out of your body and go into someone else’s, she says.

“It is 11 years since I got ill. I get a sense of achievement by helping myself. Some people can’t do that at all.

“I still attend hospital in the UK and will do so for the rest of my life. More people are being diagnosed with EDS and people are starting to know what it is.

“The future awareness for people is important.”

Amy is just like everyone else, on the same road, hopeful for the future.

“I know my limitations,” she says. “I love life. Like everyone else I have goals and dreams. It just takes me that bit longer to achieve them.”

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