An Argyll family preparing to sell their home to pay for their paralysed daughter’s treatment has received an apology.
The Buckleys of Tayvallich received a lengthy explanation and apology from the local health board.
It came after Jenni Minto, MSP for Argyll and Bute, complained on their behalf.
Argyll and Bute Health and Social Care Partnership has now ordered a specialist suit to help Jamie, 21, recover from her painful “locked-in” syndrome.
While this has been described as “great step forward” by Jamie’s parents Lee and Jenny, they still face selling their house.
The drastic action is necessary to finance the specialist care needed to allow Jamie to walk again. Unless the NHS steps in with a care plan. And fast.
Will the NHS step in?
But going by experience, the family are not optimistic.
Jamie is autistic and is incredibly sensitive.
When her beloved horse Cameron died two years ago, it triggered a painful and debilitating response in her previously healthy body.
Jamie lost the power of speech and the ability to move. The condition is known as Functional Neurological Disorder (FND), which affects the nervous system.
Private treatment
It has taken private treatment from Neurophysio Scotland in Edinburgh and counselling in Glasgow to slowly get her body moving again.
She is still in a wheelchair but is regaining the use of her right arm.
This care has cost in the region of £23,000. It has been financed by a justgiving page and charity events, plus the family’s own private funds. But both are quickly running out.
The health partnership applied for NHS funding in April. The Buckleys only got an answer this month in a letter sent to their MSP.
Mrs Minto received the correspondence from Fiona Davies, chief officer of the care partnership.
Ms Davies offers explanations for the delay. She writes: “Within NHS Highland an application can be made for a specialist out of area service when these services are not available within the health board area or via a service level agreement with another NHS board.
‘Confusion about responsibility’
“Unfortunately there seems to be confusion about who had responsibility for overseeing this application and it has become clear during this time that the actual
processes for applying for funding was not clear and was not followed correctly.”
The letter offers repeated apologies and continues: “..the family have been trialling a specialist piece of equipment called a ‘Mollii’ suit to relieve Jamie’s FND symptoms of pain and dystonia. Jamie has reported that her pain is reduced and she feels more relaxed after wearing the Mollii suit.
Health board is buying equipment
“..I have therefore agreed that NHS Highland will purchase this piece of equipment specifically for Jamie’s use in order to support her in her progress… This is being progressed as an immediate action.”
So far the cost of hiring the suit has been covered by fundraising.
Jenny, 47, said: “It is a really good step in the right direction that the NHS have agreed to pay for the mollii suit.
Selling their home is still necessary
“Regarding the house, we are still very much in the same position until the NHS agree to pay for Jamie’s treatment.”
Lee, 49, added: “There is no security.
“Until we get an answer and reassurance that the treatment will be paid for, we are still planning to sell.”
Jenny explained: “There is no quick fix. Her neurologist said it is going to take a very long time.
“I don’t think the NHS will want to pay for the amount of treatment Jamie is going to need.
“A new funding application has gone in. Given the amount of time it has taken to get to this point, I don’t hold much hope for anything happening soon.”
But stopping Jamie’s treatment to wait for a decision is “not an option”.
Thanks to MSP Jenni Minto
Both parents are grateful to their MSP.
Jenny said: “We would like to thank Jenni and her team for not giving up when the NHS kept closing doors. They were relentless.”
Last month we reported that the family have to sell their house to pay for her treatment.
Asking their supportive community for even more help just doesn’t feel right, they said.
The Buckleys feel they have no option but to downsize.
Jenni Minto said: “I am pleased that the family are happy to see progress being made but understand there will be a long road ahead for them and will continue to offer any support I can as their MSP.”
NHS Highland doesn’t comment on individual cases.
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