A mum misdiagnosed as an anorexic for 20 years now fears she has just months to live – but the NHS will not pay for her to have life saving surgery abroad.
Isla Evans, 31, suffers from a rare and life-threatening stomach disorder which causes severe pain when she eats.
She was finally diagnosed with Superior Mescentric Artery Syndrome (SMAS) last December, after being initially misdiagnosed as anorexic when the pain began 20 years ago.
The condition is potentially life-threatening as it causes the small intestine, called the duodenum, to be compressed by an overlying artery which stops food from passing through.
The illness cannot be treated in the UK, and Isla believes her only hope is to have an operation in Germany.
But NHS Grampian is refusing to fund her £16,000 treatment abroad.
Despite scans proving she suffers from the rare disorder, Isla says consultants at the NHS are suggesting the condition is “all in her head”.
Isla, from Elgin, Moray, said: “It’s quite scary. I’m just deteriorating all the time.
“I rarely get out of bed now because I’m too weak.
“It took about 20 years to get diagnosed and I wasn’t happy about the lead up to being diagnosed.
“They just wouldn’t listen to me and kept saying it was all in my head and it was anorexia.”
The mum-of-two says she was finally given the correct diagnosis after changing GPs last year.
But in a letter she received recently the NHS suggested she needed to try hypnotherapy to look at some of her “phobias”.
It also said her problem was with eating, rather than pain.
Isla added: “They admitted there’s nothing that could be done here as it’s far too complex.
“Aberdeen does not want me to go for the surgery. They have pulled my diagnosis back now.
“Even after looking at the images they said it was all in my head.”
The illness has now started to compress one of her kidneys, and Isla worries that if she does not get the surgery before the end of the summer she will die.
She said: “I need to have the £16,000 transferred over before we fly out on July 28. The surgery is on July 30.
“I don’t know if I would survive much longer and I don’t know if I would be well enough to travel.”
“My consultant is still trying to fight with the NHS to see if they can look at it again.
“I don’t expect the NHS to fund the whole operation but even if they could give a little bit.”
Isla has the full backing of her GP and consultant at Dr Gray’s Hospital in Elgin, and has contacted her local MSP Richard Lochhead.
The MSP said he he had been in touch with Isla and would continue to do what he could for her.
He added: “I am continuing to act on her behalf by raising her concerns with NHS Grampian.
“This is a complex and sensitive case.”
The NHS has offered Isla an operation but she says it would not solve the problem.
She added: “There’s an operation they can do but it wouldn’t help.
“It’s so I could eat without pain but it wouldn’t fix the artery so I would still die.”
Professor Wilhelm Sandmann, based in Duisburg, western Germany, has devised an operation which has had a 100 per cent success rate on patients affected by SMAS.
It involves cutting the major artery and re-routing it away from the intestines and kidneys.
A spokeswoman for NHS Grampian said: “It would be inappropriate to comment on an individual patient or the outcome of their treatment request.
“Speaking generally, an Individual Patient Treatment Request (IPTR) is made to the office of the Medical Director and requires support from a GP or consultant.
“A decision to support or reject the request is only made after expert opinion is sought.”
Isla and her husband Sean, 35, have started raising money for her surgery, raising £4000 so far, while also setting up a GoFundMe page.
