An Aberdeen woman left “bedbound” by multiple sclerosis is preparing to pay £46,000 for stem cell treatment she hopes could change her life.
Former NHS feedback handler Fiona Caie, 56, was diagnosed with primary progressive MS five years ago.
“I was fine up until 2019, all I had was pins and needles in my feet,” she said.
“But I was still driving and working, walking my dog, I had a normal life.
“Then it just went downhill.”
Now, Fiona can’t walk unaided and has had to give up her job and driving.
She added: “My husband’s my carer now, he used to work five days a week but now he only works three because I’m bedbound if he’s not here.”
‘My options were Mexico, Russia or London’
When she was diagnosed, Fiona was offered infusions of a medication ocrevus, which is supposed to stop the progression of the illness.
But her latest scan has shown more lesions on her spine, leaving her worried the treatment has stopped working.
This led her to researching alternative options and discovering haematopoietic stem cell transplantation (HSCT).
“I’ve always wanted to get a stem cell treatment because it has a good success rate, but the neurologist in Aberdeen wasn’t really onboard with that,” she explained.
“It’s the unknown, but I always said ‘but what if – I have to try it’ because I’ve progressed quite badly.
“I had the option to either go to Mexico or Russia, but I went down the route of going to London and I had a consultation in November.”
‘It’s like a postcode lottery’
Eventually, Fiona discovered she was eligible to receive stem cell treatment, but she’d have to pay tens of thousands of pounds, in addition to travel and accommodation expenses.
“If I stayed in England, I’d get it on the NHS – it’s like a postcode lottery,” she said.
“It costs £45,500, plus you have to go down for a stem cell harvest two weeks before.
“My husband and I will need fourteen flights back and forth to London, plus hotels, it’s really expensive,” she stressed.
Why is HCTS not available on Scottish NHS?
Fiona now wants to shine a light on the obstacles Scottish MS patients face in getting stem cell treatment.
“It needs to be highlighted, I’m on this fusion that costs £19,000 per year and I wouldn’t be on that any more because I’d be getting this treatment.
“In around two-and-a-half years, it’ll be paid, it’s like a false economy, I really don’t understand it,” she added.
But the Scottish Government says Fiona hasn’t met the criteria required for them to fund the procedure.
“We understand how distressing and debilitating MS can be, and we want to ensure that people can access the best possible treatment and support,” a spokesman said.
“HSCT can be considered for patients with highly active relapsing-remitting MS which has not responded to licensed treatment.
“However, clinical trial data does not currently support the use of HSCT in primary and secondary progressive MS.”
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Aberdeenshire mum says 8,000 mile Mexico trip is ‘only option’ for her incurable condition
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