Woman, 34, with paralysed stomach who weighed six stone as NHS cancelled her £25,000 surgery says ‘I’ve been left to starve’ Alison Taylor says she was booked in for the operation twice and each time it was cancelled for funding reasons

Alison Taylor can vomit up to 90 times a day.

Her stomach is paralysed, meaning it can’t digest food and empty itself in the normal way. At her worst, her weight plummeted to just six stone.

In severe pain and malnourished, she was told she needed an operation to implant a device in her abdomen that would send electrical pulses in a bid to stimulate her stomach into functioning again.

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But she claims the NHS cancelled the £25,000 surgery twice and told her “the money isn’t there for it”.

This was in her late twenties and now 34, she has managed to put just a stone on to her 5 foot 8 inch frame. Alison says no further operation has been discussed and she has been “left to starve” by the health service.

I’m a complex case so they’ve just washed their hands of me Alison Taylor

“I have no quality of life,” she told i. “I’m a complex case so they’ve just washed their hands of me and left me suffering in agony.”

Alison needs powerful opioids including morphine and high dose fentanyl patches to get through the day.

She got in touch with i after reading our story about Matthew Pascoe, who suffers from the same condition. The 26-year-old, whose weight dropped to eight stone, was told he must fund the gastric stimulator operation himself.

‘Sorry the money isn’t there’

Alison, from Hull, says she suffered digestive problems since birth. She was eventually diagnosed with gastroparesis. While it can be a complication of diabetes, or some types of surgery, in many cases, including hers, there’s no obvious cause.

She says health professionals dismissed her symptoms for many years as ‘mental health‘ problems.

“I was 25 before it was confirmed. As a child my parents were told I was acting up for attention. Then I was told I was anorexic. I was even told it was all in my head and sent to a psychiatrist.

“By my mid twenties I was going to hospital every few days. I couldn’t eat without collapsing on the floor. ”

Alison was so sick she was forced to give up her job aged 23 as a complaints manager, and she has been unable to work since. She has a live-in carer.

When her weight fell dangerously low at 25, doctors fitted her with a nasal feeding tube, but she says this wasn’t providing a real solution.

When she was 28, and various medications had little effect, medics told her her only option was the gastric stimulator.

I can’t help but feel it’s all about the cost Alison Taylor

“In 2012, I was told I was booked in for the operation at Hull Royal Infirmary. Then they rang me up and said sorry the money isn’t there for it.

“Shortly after I got another call to say it was back on, then it was off again.

“My consultant eventually said he didn’t believe that the stimulator would help me. But I don’t know what to believe because at one point it was decided that was what was best for me. I can’t help but feel it’s all about the cost. Surely I am sick enough with no other options it should at least be tried on me.”

Can’t keep anything down

A few years ago, Alison was fitted with a jejunostomy tube, a soft pipe which is inserted into the small bowel to deliver nutrients directly.

She says this caused her constant agony and infections.

“One time I had taken it out to clean it and I was screaming and crying in pain, with blood everywhere. We had to call an ambulance and I was rushed to hospital.”

Doctors opted not to reinsert the tube and Alison instead she now struggles on full nutrition milkshake style drinks.

“It’s very difficult to keep anything down, I vomit most of what I sip so I still weigh just under seven stone.

“I’m malnourished and have all kinds of health problems as a result, including a host of vitamin deficiencies.”

‘My body has given up’

I had to give up begging for the operation Alison Taylor

Alison now suffers osteomalacia, a weakening of the bones, for which the most common cause is a lack of vitamin D. It increases the risk of her bones fracturing.

She has also been diagnosed with fibromyalgia, a long-term condition that causes pain all over the body, fatigue and muscle stiffness. It is often triggered by a stressful event, including physical stress.

“I’m in constant pain and can’t get my weight and strength up,” said Alison. “My body has given up on me.

“I’m just given strong painkillers. There must be something that can be done but I had to give up begging for the operation and accept it.”

NHS England is responsibly for making funding decisions about gastric stimulators, which are not routinely made available on the health service. Clinicians need to submit a funding request to the body for patients.

Hull Royal Infirmary said it is not responsible for commissioning this type of operation so cannot comment.

NHS England have been approached for comment.