Mother's despair over life-changing surgery refusal
Mother-of-two Alison Jukes believes a postcode lottery may be preventing her from having the operation that could transform her life.
Mrs Jukes, who celebrated her 43rd birthday yesterday, suffers from gastroparesis, which means her stomach has a delayed rate of emptying and she cannot digest food normally. She has had the condition for two years and over that time has lost more than 40 per cent of her body weight.
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Alison Dukes
Unable to work, she lost the job she enjoyed, working as a cookery and gardening teacher at a primary school.
Bath & North East Somerset Primary Care Trust has rejected her application to have a gastric pacemaker fitted.
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The device is designed to stimulate the stomach muscle, and was suggested to Mrs Jukes by a London consultant to whom she was referred by the NHS.
The operation, which Mrs Jukes has been told could cost between £20,000 and £35,000, had to be considered by the trust’s funding panel because it was considered to be “exceptional”. Mrs Jukes, from Midsomer Norton, Somerset, also lost an appeal against the trust’s decision.
The trust says it cannot comment on individual cases, but did say said: “Each individual application for funding is considered 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 the cost of the treatment. Applications are approved when sufficient evidence is shown that treatment is likely to be clinically effective.”
Mrs Jukes says that people in surrounding areas have been allowed to have the operation on the NHS.
“I have spoken to one patient in Bristol who has told me it has helped her have a much better quality of life,” she said.
When her condition was first diagnosed last January she was prescribed tablets, but they did not work. While awaiting the outcome of her appeal she was put on a feeding tube to which she has to be attached for 15 hours a day.
It has stabilised her weight loss, at just under seven stones, but Mrs Jukes, who has two sons, Charlie, 15, and George, 17, says: “It causes me pain – I have to take pain-killers every day – and carry a pump with me wherever I go in the house or garden. I do so want the chance for a better quality of life, so that I can look after my family as I used to and enjoy social occasions as I once did.”
Son George said: “My mum’s doctor suggested giving up on the NHS funding and paying for the operation privately, which we believe she shouldn’t have to do as there are people in surrounding areas who have been allowed to have the operation on the NHS. It’s affecting our whole family life. We are desperate for a positive outcome.”
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