Woman with rare stomach condition which has caused her to lose nearly half her body weight begs NHS for an operation – to PILE ON the poundsAlison Jukes suffers vomiting and nausea whenever she tries to eat or drinkShe is kept alive by tube feeding nutrients directly to her stomachHer weight has plummeted from 12st in 2010 to just seven stone today
07:12 GMT, 13 September 2012
A woman with a rare disorder which has caused her to shed nearly half her body weight has been turned down by the NHS for an operation to help her to gain weight.
Alison Jukes, 43, of Midsomer Norton, Somerset, was two years ago diagnosed with gastroparesis, a condition which prevents her stomach from properly digesting food.
She suffers vomiting and nausea whenever she tries to eat or drink; to stay alive she receives nutrients through a tube directly into her abdomen.
Suffering: Alison Jukes, 43, before she developed gastroparesis (left) and after. She is begging the NHS for an operation that could help her to live a 'near-normal life'
Her weight has plummetted from 12st in 2010 to just seven stone today and she has been forced to give up her job as a primary school teaching assistant because of sickness and lack of energy.
Mrs Jukes has been battling for an operation which she hopes would help her to live a 'near-normal life'.
A consultant in London suggested she have a gastric pacemaker fitted – designed to stimulate her stomach – and referred her to the NHS for treatment.
But Bath & Somerset Primary Care Trust told her the operation, which costs up to 35,000, is not a proven solution to her illness and its funding panel rejected her application and her appeal.
Staying alive: Mrs Jukes with the Nutricia infinity pump that feeds her directly via her stomach. She must use it between 6pm and 9am every day
Mrs Jukes, who is married to Tim, 27, and has two sons, Charlie, 15, and George, 17, said that it was a 'heart-breaking decision', with her condition leaving her unable to look after her family.
'I wouldn’t be able to stand up long enough to make a whole meal for anyone,' she said. 'Not being able to look after them is the biggest problem for me. It’s so frustrating.'
Mrs Jukes said her pump had to run between 6pm and 9am every day. On the rare occasions she's up at those times, she must carry a special backpack containing the mechanism.
A tube remains connected to her body which passes through her abdomen into her stomach and feeds her small amounts of food each hour.
'If I eat or drink anything, I vomit,' she said. 'And I’m in constant pain – I have to take painkillers every day.
'The condition is incurable but I’m told this operation could help me lead a near-normal life, stopping the nausea, and helping me gain weight and energy.'
Despite the double-rejection, Mrs Jukes said she would not give up the fight and would try to apply for the operation again.
'I’m trying to be referred to a different expert who has experience of several gastric pacemaker operations,' she said. 'Hopefully he will be able to add evidence to my application.'
She added: 'I have spoken to one patient in Bristol who has told me it has helped her have a much better quality of life. If they can have it, why can’t I'
The trust said it judged each application for funding on its merits.
'Funding panels consider clinical circumstances of patients, expected risks and benefits of the treatment proposed, the clinical evidence supporting the treatment and cost of the treatment,' a spokesman said.
'Applications are approved when sufficient evidence is show that treatment is likely to be clinically effective.'