A WOMAN hasn’t eaten properly for four years because her stomach is paralysed – but the NHS won’t pay for life-changing surgery.
Tina Lamniai, who is 54 but “feels 94” given her condition, is fed through a tube and cannot eat or drink anything without vomiting.
Her condition changed almost overnight, but what she thought was just a “one off” stomach bug turned out to be something far more debilitating – a condition called gastroparesis.
For people with the long-term condition, food passes through the stomach slower than it should because the muscles have slowed down or stopped working at all.
Although her condition is relatively rare, Tina is among 100 or so people in England who could benefit from surgery every year.
Called gastro-electrical stimulation, it involves implanting an electrical device into the abdomen to shock the stomach muscles into working.
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Patients in Scotland, Ireland and Wales are lucky enough to be funded for the £30,000 op.
Tina, who lives with her husband in temporary accommodation in Bishop's Stortford, Hertfordshire, after their home flooded in March, told The Sun: “People like me get fed up waiting and go privately, but I just don’t have that kind of money.
“I pay my national health stamp so I should be entitled. It just falls on deaf ears when it comes to NHS England they just prepared not to give any answers.
“I just want funding so my husband and I can get our life back to normal. Because while I’m on the feeding tube, my life expectancy has been reduced year after year.
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“[My husband’s] just scared because he can see me deteriorating in front of his eyes, but there's nothing he can do.”
Tina, who works from home as an account assistant, said she has “no quality of life”, adding: “I can't go out, I haven’t been on a holiday in four years, I always have to have somebody with me, I've got a disabled badge because I can't walk very far.
“When I do go out with my family it's horrible because it's hard when you sit there and watch people eating and you can’t. It is absolutely agony."
Tina’s consultant Mr Sritharan Kadirkamanathan at Broomfield Hospital in Chelmsford, Essex, says patients are “let down” by NHS England.
Being the leading hospital for the treatment of gastroparesis, Broomfield has conducted the op on more than 200 people, and has found the results to be effective and long-lasting.
It is also cost-effective for the NHS, which pays an estimated £3,000 per year for a patients’ feeding tube, and potentially thousands more for hospital stays for pain, vomiting and dehydration.
The surgeon, who has written letters to the NHS and Wes Streeting, the Labour MP for Ilford North and Shadow Secretary of State for Health & Social Care, told The Sun: “Based on the Scottish data we should be performing 100 of these procedures a year (a very conservative estimate).
“These patients are condemned to a life of tube feeding. They are often very young patients who are unable to go out to restaurants, socialise and enjoy their young lives.
“It is astonishing that NHS England does not fund this procedure. The irony is that patients from Wales and Ireland, travel to have their surgery in Chelmsford."
Sudden vomiting
Tina’s ordeal began around four years ago, around 2018, at a time when she was healthy and active.
She said: “One night I went to bed. I was being sick, but for no reason at all.
"I thought it's just a one off. It happened a couple of times. And then I went to my GP and she said, ‘We've got to find the reason for this’.”
Tests explored what doctors believed to be gastroparesis, during which time Tina says she “wasn’t eating very much”, mostly sugary food to keep her going.
It wasn’t until a year ago that Tina was given the formal diagnosis of gastroparesis.
Although diabetes and neurological conditions like Parkinson’s are known causes, many people like Tina are clueless as to why they have been struck with the condition.
The symptoms of gastroparesis make life miserable, and include feeling sick or being sick, tummy pain, heartburn, bloating and a general difficulty eating.
Tina, who says her stomach is “completely non-functioning” said: “I just couldn't tolerate food.
"Every time I ate food I was in chronic pain, being sick. I was bringing it up at night and then it's going back down with all the acid.
“I couldn't take it so I was put on a feeding tube, just in the short term, we hoped.
“We put a funding request into NHS England for me to get the gastric pacemaker twice.
"They rejected it and said I didn't follow any different symptoms than anybody else.”
The outlook for those with gastroparesis is rather bleak, with little treatment options.
Botox injections can give temporary relief. But a person’s diet must be overhauled.
For those that can stomach it, they must eat several small meals per day or have liquid meals.
Tina must be hooked up to a feeding bottle for almost 12 hours a day.
She had a feeding tube through her nose and down her throat to her bowel for a year. It left her constantly feeling as though she was choking.
In August, Tina had a tube fitted through a hole in her abdomen, which has given her some relief. It bypasses her stomach and goes straight to her bowel.
Tina said: “The bottle and pump are on a stand which I have to carry around with me. That’s for the whole day.
“The stomach doesn't absorb any of the nutrients that I need.
“I have an appetite but I know that if I ate something, I’d be sick. I physically can't touch food.
“I think my mind just tells me not to have food because it makes it worse, so I never feel hungry. But I do have the craving for food. Recently I’ve been craving lamb and mint sauce.”
Tina added: “I've got no energy, I've been collapsing because my blood sugar is dropping because I've not got enough sugar intake in the pump. I just feel tired.
“Before this condition came along, I was active, I was always out with the family. I’d take my mum out, we’d have family meals around people's houses.
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“It's hard for my family to get their head around it because one minute they saw me okay, then I was being sick, and then within the space of three years, I'm on a feeding tube and they just can't get their head around it, or why the NHS aren't funding it.”
NHS England said: “NHS England has carefully reviewed the evidence to treat severe gastroparesis with gastroelectrical stimulation (GES). We have concluded that there is not enough evidence to make the treatment available at this time.”
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