A one-year-old with a rare genetic condition will have to wait more than five months for an operation on the NHS

A one-year-old girl with a rare genetic condition will have to wait more than five months to be operated on by the NHS, her mother says. Rowanna Cookson, one of her, suffers from a rare genetic disease called CTNNB1, which means that her stomach does not allow her to eat normally and her muscles are weak. She is one of only 500 people in the world with the disorder and when she was seven months old, her mother Amy Cookson, 36, was told Rowanna would need an operation. Rowanna is being fed through a tube through her nose which has a risk of fluid entering her lungs, but the surgery will allow her to be fed directly to her stomach. But Amy said that although Rowanna was evaluated for surgery in December and she was told she could have it in a couple of weeks, she hasn’t had the surgery yet. Now Amy, who is Rowanna’s full-time caregiver, said she “doesn’t blame the nurses,” but instead she “blames those in charge.” Amy said: ‘I don’t blame the nurses, they are amazing and think she needs surgery.’ I blame those responsible, the system and government policies. “It doesn’t work. Most recently, they blamed it on the junior doctors’ strike. But she was referred on December 5 and saw a consultant in February. “I signed the consent forms and the pre-op. We want the operation as soon as possible. “Rowanna deserves to be fed properly and safely, it’s that simple. Rowanna has a life of disability ahead of her. The least we can do is feed her comfortably and safely.” She is due for surgery in May at Children’s Hospital of Sheffield, but Amy said it wouldn’t surprise her if that too was canceled. Meanwhile the tube in her nose causes discomfort and sometimes she pulls it out. But despite all this, she still said Rowanna is ‘so smiley’ and that ‘everyone is saying how happy and smiling she is.’ Amy, of Sheffield, South Yorks, said: “She’s so smiley – she has such a happy demeanor and giggles a lot.” Everyone says how happy and smiling she is. She is always very patient when she is taken to hospital.” Craig Radford, Chief Operating Officer of Sheffield Children’s NHS Foundation Trust, said the hospital was “doing everything we can” to reduce waiting times. He said: “Across Sheffield Children’s our teams are doing everything they can to see patients as soon as possible as we know how difficult it is to wait to access care. “Because we provide a range of specialist services, we have large numbers of patients coming to us for care they cannot get elsewhere. “We are reducing wait times in several ways, including introducing more weekend and evening clinics and surgical options for some specialties. “We are seeing a decrease in patient wait times, but we continue to work hard and find new ways to see people as quickly as possible to avoid further delays.” A spokesperson for the Department of Health and Social Care said: “Reducing waiting lists is one of the Prime Minister’s top five priorities and longer waits for treatment are decreasing, supported by a record £14.1bn over the next two years to address the most pressing issues facing the NHS and social care.” The NHS has successfully achieved the first objective of our plan to virtually eliminate waits by more than two years and reduced waits by 18 months of more than 50% in one year. “NHS trusts are using innovative surgical hubs and surgical robotic systems to contribute to the number of operations and improve patient outcomes.”

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