‘Families in turmoil’ fear over axing of children’s heart unit

Little Ruby Brice was diagnosed last year with a rare combination of multiple heart defects which means she is unlikely to live into adulthood.

She underwent one major operation in February and will need more open heart surgery in the years ahead as surgeons at Leeds Children’s Hospital battle to improve her heart function.

But her mother Sally Boocock fears family life for Ruby, her identical twin sister Daisy and their four-year-old brother Henry would be “non-existent” if a nationwide review of children’s heart surgery recommends the closure of the Leeds centre. Two-year-old Ruby, who lives in Cracoe, near Skipton, would instead travel to Liverpool for treatment – leaving the family 80 miles apart.

Her worried mother, 29, spent Easter in Dales villages securing over 3,000 signatures calling for services to remain in Leeds on a petition which has already won support from more than 100,000 people across the region.

The heart unit in Yorkshire is included in only one of four future configurations for surgery in England, forcing youngsters to travel to Newcastle, Liverpool or Leicester for treatment.

Supporters of the Leeds unit have angrily accused the review team of failing to acknowledge the full quality and extent of services available in the city.

Health Secretary Andrew Lansley has come under heavy pressure from Yorkshire MPs over the issue but now in a key move he has accepted for the first time that the final decision rests with him.

Sally Boocock, an ambulance technician, said: “I can’t imagine what we would do if the heart unit at Leeds closed. The thought of travelling to Liverpool is just so daunting. I just pray that if she became an emergency case, she would survive the trip for life-saving surgery.”

She said family life for her and partner Daniel, 32, and the three children would be “non-existent” if Ruby had to travel further away.

“If she got ill, we couldn’t all be in Liverpool together. I would be with her and Daniel would have to stop work to look after the children so there would be financial costs,” she said.

“If we were stuck a long way from home and she became really ill, she could be dead by the time Daniel gets there.

“With little Henry, he knows what is going on now and I wouldn’t be there for him or for the other twin. A lot of other parents are in the same boat.”

The twins have DiGeorge syndrome which can cause a range of health problems but checks on Daisy show she does not have similar heart complaints to her sister. Ruby has a series of congenital heart defects including a hole in her heart and will need another operation within a year.

“They told us they only come across a heart like hers once a year. It is a waiting game – she could deteriorate next week,” she said.

“I agree that centralising specialist services would be better but they cannot leave Yorkshire with no provision whatsoever over such a wide area. It’s just wrong.”

Sharon Cheng, of the Leeds-based Children’s Heart Surgery Fund charity, said the impact of moving care from the region would not just be felt by patients.

“Families are the ones as much opposed to this as patients as the whole family unit is disrupted,” she said.

Stuart Andrew, Tory MP for Pudsey, who is co-ordinating efforts by MPs to retain the Leeds unit, said if the decision went the wrong way, campaigners could now put legitimate concerns to Mr Lansley.

“It does give us a Plan B which I didn’t feel we would have before,” he said.