Sheffield Children's Hospital: Worried mum fears wait for operation puts daughter, aged one, at risk

But the wait for an important operation for tiny Rowanna Cookson has now already been five months – and her mum fears it is putting her at risk

Rowanna, from Stannington, Sheffield, suffers from a rare genetic condition called CTNNB1, one of only 500 in the world with the disorder of her chromosomes. It means she has weak muscles, and cannot sit up. It also means her stomach does not allow her to eat normally.

Mum Amy Cookson has been told her daughter needs an operation to put in place a hole to allow her to be tube-fed straight to her stomach rather than a tube in through her nose, which is considered uncomfortable for Rowanna, and potentially risky if the tube gets knocked, as it could put liquid in her lungs instead of her stomach.

Amy fears this could cause her to effectively drown.

Rowanna, aged one, was first assessed for an operation in December at Sheffield Children’s Hospital. Then it took until February to see a gastro consultant. But she had still not been given a date for the operation. She was finally given a potential date, May 15, after Amy refused to leave until she had one. She was initially told there was only a five to six week waiting list and is worried whether it will actually happen in May.

Amy said: “She’s so smiley – she has such a happy demeanour and giggles a lot. Everyone says how happy and smiley she is. She’s always really patient when she gets taken into the hospital.

“I don’t blame the nurses. They are great and think she needs the operation. I blame the people in charge, the system, and Government policies. Its not working.

"Most recently, they’ve blamed the junior doctors strike. But she was referred on December 5 and saw a consultant in February. I’ve signed the consent forms and pre-op.

"We want the operation as soon as possible. Rowanna deserves to be fed properly and safely, it’s as simple as that. Rowanna has a lifetime of disability ahead of her. The least we can do is get her fed comfortably and safely.”

She said the tube through her daughter’s nose caused discomfort, with the area becoming sore, and because Rowanna moved a lot, she sometimes pulled it out.

Craig Radford, chief operating officer at Sheffield Children’s NHS Foundation Trust 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. As we provide a number of specialist services we have a high number of patients coming to us for care they can’t receive elsewhere.

“We are reducing waiting times in a number of ways, including introducing more weekend and evening clinics and surgery options for some specialities. We also have a panel which reviews patients waiting to receive care with us and this is to make sure no harm comes to patients while waiting and that those with highest priority are seen quickly. We are seeing a decrease in waiting times for patients but we’re continuing to work hard and find new ways to see people as quickly as we can to avoid any further delay.”

A Department of Health and Social Care spokesperson said: “Cutting waiting lists is one of the Prime Minister’s top five priorities and the longest waits for treatment are falling, backed by a record £14.1 billion over the next two years to address the most pressing issues facing the NHS and social care.

“The NHS successfully met the first target in our plan to virtually eliminate waits of over two years and has cut 18 month waits by over 50 per cent in a year.

“NHS trusts are using innovative surgical hubs and surgical robotic systems to help drive up the number of operations and improve outcomes for patients.”