23-year-old Róisín Hackett said she was frustrated at having to pay most of her weekly disability allowance for an ankle foot orthosis  brace when hers broke this week.

A young woman on disability allowance has shared her frustration at having to pay out €197 for a leg splint because the €1,000 brace the HSE provides has been deemed by a private practitioner not to be the correct type for her.

Róisín Hackett “tweeted in a moment of frustration” at having to pay the majority of her €208 weekly disability allowance for an ankle foot orthosis (AFO) brace when hers suddenly broke this week.

She says the HSE refuses to cover the cost as it has a business partnership with another orthotics company which manufactures Róisín’s brace in France. She finds it unsuitable and so will have to continue paying for the AFO brace yearly.

The 23-year-old has scoliosis and cauda equina syndrome (CES), a rare and severe spinal stenosis that affects the mobility in her legs. She is essentially paralysed from the knee down on her left leg. As a result, Róisín needs a brace to walk.

“My disability affects both sides of my legs, it makes it difficult to walk and I walk at a much slower pace,” she said.

However, once I have my splint on it’s grand.  When I don't have it or it needs to be repaired, it feels like I’ve lost my leg. 

Róisín has been using a splint for over five years — without it she would have to use a wheelchair or crutches.

“When your brace needs to be repaired or replaced, the HSE provides you with a plastic splint which I find so uncomfortable,” she said. 

After eight months of the HSE sending her new splint back and forth to France as it did not fit Róisín, she took it into her own hands in March 2021 to see a private consultant.

“I’m a very active person and I was eight months without a splint and had been denied funding for the second backup splint. When it arrived back for the second time, it was still totally unusable.

“They kept saying it cost €1,000 to make because it’s custom carbon fibre — the cost was constantly being referred to. I was so frustrated, I went to a private orthotist who took one look at the splint and said, ‘why did they give you that?’ 

loooove having to spend 197 out of my weekly disability allowance of 203 euro on a new leg brace that the hse refuses to cover because they have a business partnership with another orthotics company that doesnt make braces that work for me :-)

“The orthotist said I was way too active to be wearing a splint like that. People who used wheelchairs and needed to move short distances like going to the toilet, or an elderly inactive person, would wear a splint like this,” she said.

The orthotist told her to buy an off-the-shelf AFO brace with an elastic strap for just under €200 online, which enabled her to use the little amount of movement she has in her foot and allows her to move the muscles that work in her left leg.

“It felt like getting a brand new leg,” Róisín said. "I had a range of movement that I hadn’t had in two years.

"It was an amazing feeling, but I couldn’t help getting the sense of just feeling really sorry for myself. I was thinking about all the things I could have done if I always had this brace." 

my new splint came today thanks to some very kind strangers on the internet 💖 https://t.co/NnOHDx8rCu pic.twitter.com/lhQmYZtuZP

Mobility aids not suiting the person using them is a common issue disabled people incur, according to Disabled Women Ireland (DWI).

Amy Hassett, a disability advocate with the DWI, also said there is an added expense living as a disabled person, and a lot of disabled people often have to go private like Róisín to get mobility aids they are happy with.

According to the latest disability report, it costs the average disabled person in Ireland just under €10,000 in expenses a year to cover disability-related costs.

“There are issues in terms of budgeting which does limit the HSE with what they can do," Ms Hassett said. 

“I have been waiting for an assessment for a manual wheelchair for two years. They won’t send you for an assessment until they know they have the funding for your new device.

Currently, I’m in a wheelchair that’s not fit for purpose, it’s about eight to 10 years old. 

The HSE Community Healthcare Organisation for Dublin North City and County (CHO DNCC) said it “can advise the HSE uses a number of suppliers to help meet the needs of patients requiring orthotics”.

“The agreements in place are compliant with the EU procurement policies,” it said. “The price of splints can vary greatly depending on the need of the patient. Each appliance prescribed will depend on a clinical assessment, with the aim of obtaining the best outcome in terms of comfort and mobility for the patient.”

CHO DNCC also encouraged patients who are dissatisfied to visit their healthcare provider who, it said, would be happy to engage with them.

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