WALKING MIRACLE
» NHS bosses told Emmy she would be in wheelchair for life »She pays for own physio sessions to get back on feet » Now health chiefs refuse to pay for life-changing leg brace
A WOMAN who was left paralysed following brain surgery says she has been abandoned by the NHS after using her own benefits to learn to walk again. Emmy Macnicol has been forced to find £60 each week for physiotherapy after being told there wasn’t enough cash to pay for the rehabilitation she needs. The 27-year-old’s self-funded treatment has been such a success that she’s defied doctors who warned she’d be confined to a wheelchair and may even have to live in a care home.
But she has now been dealt a further blow by NHS Highland health chiefs, who have refused to fund a specialist leg brace that would transform her quality of life.
Emmy said: “I’ve been let down at every turn. Because of a basic
I’ve been left to deal with it myself. What the health board have done is cruel. I don’t know where else to turn
lack of funding I’ve not received the vital help I need. The health board have just given up on me.”
Emmy has vagoglossopharyngeal neuralgia – a rare neurological condition that causes her nerves to strangle her brain stem, causing severe pain in her head, throat and ears.
It left her unable to eat for six months and caused her weight to plummet.
She was told by doctors she needed emergency surgery to save her life.
But after coming out of theatre, she suffered a massive stroke, which left her unable to move the left side of her body and medics said she would likely spend the rest of her life in a wheelchair.
Emmy said: “When I woke up from surgery, I’d suffered a medullary infarction which only affects one per cent of people worldwide.
“I couldn’t move the left-hand side of my body and was confined to a hospital bed.
“I was told by doctors that intensive physio was the only hope of getting me back on my feet but this has never materialised.”
She was operated on by specialists at Southmead Hospital in Bristol in 2016 before being transferred to Raigmore Hospital in Inverness to begin her rehabilitation six weeks later.
Her flight by helicopter back to Scotland was cancelled four times, leaving Emmy’s family with no option but to find the money themselves to bring her home on a commercial flight.
She said: “I couldn’t move. I’d had a stroke and undergone major brain surgery but the people in charge of my care cancelled the helicopter flight three times.
“On the fourth attempt, I was about to be taken to the helipad when my surgeon got a call to say they had refused to cover the cost of the helicopter and told my family to put me on a commercial flight.
“My mum had to come down and pay to fly me to Scotland and then transfer me to hospital. The medical team at Bristol were appalled at the way I had been treated.
“The plan was to place me into a rehabilitation unit but it never happened. Instead, I was put into a stroke ward and I’ll never forget the day the doctor said I’d never walk again.”
Emmy, from Inverness, was told she would need a powered wheelchair to get around and that because her parents’ home wasn’t suitable, her only realistic option was to go into a care home.
She said: “I was heartbroken. I couldn’t and wouldn’t accept it. I knew I had to battle to get back on my feet and that’s exactly what I did.”
She was moved to another ward where she met a cancer physiotherapist and, although she wasn’t neuro trained, she began working with Emmy.
Due to the very limited movement in her hip, she shouldn’t have been able to walk at all but, after being fitted with a knee ankle foot orthosis, she developed the ability to hop.
Emmy said: “The physio was amazing but she made it clear that she wasn’t trained to deal with cases like mine.
“I should have been getting physio twice a day but I was told I was only able to get it once a week.
“I told her I wanted to walk again and she came up with the idea of bracing my leg. It’s only designed for a few steps at a time but it has allowed me to take my first steps – something doctors told me I would never do again.
“I’ve progressed further than anybody thought but the brace is now doing more harm than good.
“It’s causing problems with my spine and I’m being forced to spend most of my time in a wheelchair.
“When I got out of hospital there was
no help and no physio input. Now I’m funding my own rehab and using the little money I have on a private session once a week. I’ve been left to deal with it all myself. What the health board have done is so cruel.”
Emmy is so desperate to walk again that with the help of her sister Rebekha, 22, she has launched an online appeal in a bid to raise the £5000 needed to buy a state-of-the art leg brace privately.
She said: “I don’t know where else to turn. I want my independence back, to be able to stand on my own two feet again and I’ll try whatever I can to get there.
“This lightweight brace would mean potentially I would have no need to use a wheelchair at all.
“I would be able to walk with a more natural gait without my leg fatiguing.
“Little things like walking uphill, upstairs or playing with my dog – simple, everyday things that people take for granted – would be within my grasp again. It would mean everything to me.”
The brace Emmy needs is made of lightweight carbon fibre material and is slimline, meaning she can wear it under her clothes.
She says she was told that NHS Orthotics are not funded to supply anything other than the heavyweight leg braces due to strict funding cuts.
She said: “I have the potential to walk much further but the heavy NHS brace locks my leg in place and holds me back.
“Even though it’s universally agreed that the new brace is exactly what I need, and I meet all the requirements, the NHS funding cuts mean I must
find all the money myself. I’ve been told there’s no scope for it whatsoever.” Emmy’s condition will mean she needs more brain surgery in the future.
She said: “I spent most of my childhood in hospital and had to cope with severe pain every day. It robbed me of my dream to become a vet because I had to miss so such school.
“The condition is also known as suicide disease because so many people can’t cope with it. The worst part was not being able to eat for six months and having to be fed through a tube. I lost a lot of weight because I couldn’t swallow anything.
“Without the help of my family and friends, I wouldn’t be where I am today. I am eternally grateful, words cannot express how thankful I am. I just hope I can raise the funds to buy the brace that could change my life.”
An NHS Highland spokeswoman said: “We are sorry that the patient is not happy with the care she has received from NHS Highland.
“We are unable to discuss this due to confidentiality but we would encourage her to get in touch with our feedback team so this can be discussed with her in detail.”