This year should have marked the end of the campaign to keep children’s heart surgery in Leeds. But after the dreaded decision to close the unit was made, determined attempts to overturn it started. Katie Baldwin reports on the story so far.
TODAY Evan Davies is a happy, healthy nine-week-old.
However, it could have been very different.
His mum Rachel fears that if he hadn’t been diagnosed with a heart condition before he was born, he might not have survived.
It’s the specialist care and treatment in Leeds, and the fact it is not too far from their home, that she credits with saving him.
“The antenatal diagnosis saved his life,” she said.
“We would have come home and four days later he would have collapsed at home. It would have been luck whether we could get to hospital in time to save his life.”
A scan when Rachel was 20-weeks pregnant showed Evan had a problem with a heart valve, but medics also suspected a more serious defect.
A few days after his birth, they confirmed he was suffering from the more serious condition – coarctation of the aorta.
“They said he needed the surgery then, and if he didn’t, he might die,” said Rachel, 34.
Aged just six days, Evan underwent major heart surgery at LGI.
He made an amazing recovery and within five days was back at home.
Now he is doing well, gaining weight and his doctors are pleased. He may need further surgery eventually, but for now Rachel and husband Miles are just relieved his condition was picked up.
However they know that if they wanted the same surgeon to operate, it could be difficult if the expertise is no longer here.
“That’s devastating for us because we have such confidence in Leeds,” she said.
While Rachel was in hospital with Evan, older son Sam, two, could see her every day.
“If we had had to go to Newcastle, I would have been on my own.
“It’s hard enough anyway but at least I could see him for an hour a day. Not to have the support of my family would have been very hard.”
Three years ago, no-one could have foreseen how children’s heart surgery was going to become such a contentious issue.
It was the needless deaths of babies with heart problems in Bristol in the 1990s that prompted the changes.
Experts wanted fewer centres carrying out the operations – not to save money, but because surgeons become better at carrying out incredibly difficult procedures on tiny hearts if they have to do them more often.
The Safe and Sustainable review, part of the health service body NHS Specialised Services, was set up to draw up plans.
The review team say the changes are vitally important.
Programme director Jeremy Glyde said: “Royal Colleges of medicine and professional associations have publicly backed the NHS decision to pool surgical expertise in fewer larger centres.
“Clinicians have made clear that these urgent changes will save more children’s lives and reduce the side effects of surgery.”
At LGI, one of the 10 hospitals in the review, the moves were initially welcomed.
However, last year it was revealed that the city’s unit was under threat and in July, after a marathon meeting in London, NHS bosses decided it should no longer carry out children’s heart surgery.
Sick youngsters from Leeds and Wakefield would have to travel to Newcastle instead, sparking anger and fear from families in the region.
Immediately, a committee of Yorkshire councillors said they would appeal to the Health Secretary to intervene.
Elsewhere in the country, other politicians did the same, prompting Jeremy Hunt to ask the Independent Reconfiguration Panel, which looks at NHS changes, to review the whole process.
The body which made the final decision, the Joint Committee of Primary Care Trusts, says it will work with the review, but that any delays only increase uncertainty.
Chairman Sir Neil McKay said:“We will work closely with the IRP to assist the panel’s review of the JCPCT’s decision in whatever way possible.
“The decision on the future of children’s heart services, which was welcomed by the Royal Colleges of medicine, doctors, nurses and national charities, was made after carefully considering a number of factors, which included evidence on patient travel times, transferring ECMO (specialist lung) services and demand on surgical services.”
But another challenge is in the offing too.
Before the IRP review was announced, Leeds campaign group Save Our Surgery had already launched legal action.
It hopes to overturn the decision through a judicial review.
Both processes are now running side-by-side.
Sharon Cheng, from Save Our Surgery, said: “We are still fighting away.
“The court case is taking precedence and we’re submitting a submission to the IRP as well.
“We still feel this region would be deprived should there not be heart surgery here.”
She said the panel would be doing an in-depth review, including visiting the hospital, and campaigners hoped the verdict on the unit would be more positive than previously.
“Things were overlooked before, and we don’t want them to be overlooked again,” she said.
“We are ready.”
Sharon said the mood of the campaign was positive, as they look forward to the court case and results of the review, both expected next February.
“We have just got to remain hopeful because it’s such a logical thing to keep this service in Leeds,” she said.
“We have got a strong case.
“We will leave no stone unturned.
“We’ve got to get to the bottom of this because it’s the wrong decision”.
Campaigners plead for cash to finance fighting fund
As the fight to save the heart unit steps up, so does the need for cash to finance the battle.
This Friday, campaigners are hoping the whole of the region will back a massive fundraising event.
Hundreds of schools and businesses have already signed up to the Wear Red Day, supporting the Save Our Surgery campaign, which is backed by the Yorkshire Evening Post.
Money raised will go into a fighting fund to pay for the legal action launched to try to overturn the decision to strip LGI of its children’s heart surgery service.
Sharon Cheng, from the campaign, said: “We know it’s a tough time of year for people but this is about the future generation and it can affect anybody at any time,” she said.
“Even if you can give just a little, it will go a long way.”
Three Leeds sisters have organised the event after one of their sons was diagnosed with a congenital heart defect.
Carmen Emmerson’s five-year-old son Ciaran will need surgery next year.
Together with sisters Emma and Theresa, she has organised the Wear Red Day and contacted schools throughout the region.
Carmen, from Scholes, Leeds, said: “We’ve never done anything like this before.
“We’re just mums who had a grand idea.”
She said they were delighted at the response so far, with school children, businesses and even Leeds United getting behind the day.
“It’s raising lots of awareness as well,” she said.
“There’s still time to sign up to take part.”
* To support the Wear Red Day, log on to: www.saveoursurgery.net, call 0113 3925907 or email: firstname.lastname@example.org