An Argyll family say they have to sell their home to pay for their paralysed daughter’s treatment.
Jamie Buckley’s mum Jenny claims the therapy for a rare ‘locked-in’ condition would be available on the NHS if they lived elsewhere.
The family turned to their “amazing” community and donations funded treatment – which has helped Jamie immeasurably.
Watch this short video to see the difference and why Jamie’s family are desperate for treatment to continue:
But she says that they will have to sell their home and downsize to release money to pay for her treatment.
She added that the family cannot move to another health board area to qualify for free therapy because Jamie’s siblings are still studying.
What happened to Jamie?
Jamie, 21, who has autism, always relied on her horses to help her through life.
But when her beloved horse Cameron died two years ago, her previously healthy body went into shock.
Jamie, from Tayvallich in Argyll, lost the power of speech and the ability to move, effectively “locked in” with grief.
It is known as Functional Neurological Disorder (FND), a complex condition that affects the nervous system.
Messages between the brain and body get confused, resulting in full body paralysis, painful spasms and seizures.
How have they coped so far?
Hopes of getting treatment in Glasgow were dashed when the service was cut last December.
Her family and friends raised more than £15,000 with a just giving page and community events.
This helped to pay for private psychological and physical treatment. And Jamie is making major progress.
But it’s a fraction of what’s needed – and the family feel they have to find another way.
Jenny, 47, said: “We have asked too much of people, especially in the current economic situation.
“People have been so generous. Our local community has been incredible.
“I don’t feel it is appropriate to ask for more.
‘We have been backed into a corner’
Currently Jamie is six weeks into an eight week block of specialist neurologist care in Edinburgh. Her family says progress has been amazing.
Now she can turn pages in a book, stir a cake mixture, throw a ball and do a jigsaw puzzle with her right arm.
But the money is quickly drying up and the family feel they have been “backed into a corner” with no option but to sell their home.
Jenny said: “To stop treatment just now is not an option. The damage it would do to her mental state frankly isn’t worth thinking about.
“She can pick things up with her hand, is making automatic movements which she never did before. Scratching her head or her eye is another development. And she is able to put a bit of weight onto her right leg.”
Jamie is even becoming vocal again. She has started to say “Oh,” and “Ah.”
A decision is yet to be given on an application for NHS funding made back in April.
Their four-bedroom house is on Jenny’s family farm.
But they need to release cash by selling it.
Jenny said: “It worries me what we will be able to get – the market is crazy. The only reason we were able to build there in the first place was because it’s on my dad’s farm.
Selling the family home
“Tayvallich is one of the highest postcodes for house prices in Argyll.
“We will have to downsize.”
Jamie has a brother Vinnie, 15, soon to sit exams and a sister Drew, 18. So moving to another health board area is not feasible.
NHS Lothian, for example, has a team that works with FND patients.
The Buckleys are planning to put the house on the market in the new year. Jenny said: “We’re devastated. The kids have all grown up there.
‘We have no choice’
“The NHS have left us with no choice. They have kept us in the dark with what’s happening.”
Months on from the original funding application, the department continues to come back asking more questions.
“They are just stalling. They don’t reply to emails or they take ages to respond,” Jenny said.
As part of her treatment, Jamie has a molii suit from Neuro Physio Scotland.
The skin-tight suit has 58 electrodes sewn into it that targets muscles. An hour’s therapy gives 48 hours relief.
Buy invaluable suit or pay for more treatment?
Jenny said: “The difference after wearing the suit is night and day. It not only relaxes her muscles and increases mobility, but gives her a much needed relief from the pain.”
The suit costs £460 a month to rent. Or £5,100 to buy it outright.
Decision time has arrived: “We have got two weeks left of treatment in Edinburgh. I have got exactly £5,100 at the end of that.
“Now we are in a position, do we buy the suit or do we spend it on treatment? We are trying to find funding to buy the suit, but you have got to be part of an organisation to get funding from any charity.”
Jenny knew their money would be gone at the end of this block of treatment. She hoped to have an answer from the NHS by now.
Who is helping?
Argyll and Bute MSP Jenni Minto MSP is writing to the Scottish Government on Jamie’s behalf.
Ms Minto said: “I was very sorry to read of Jamie’s condition and feel NHS Highland are being too slow to respond to the family and to my emails.
“Therefore I am writing to the Cabinet Secretary for Health and Social Care to seek government assistance in providing the answers the Buckley family deserve.”
An Argyll and Bute Health and Social Care Partnership spokeswoman said: “Due to patient confidentiality, we are unable to comment on individual patient cases.
“We would encourage the family to get in touch to arrange a meeting with the active multidisciplinary team.”
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