Leeds General Infirmary child heart surgery unit 'safe'
A children's heart surgery unit that was temporarily closed last March owing to fears over a high number of patient deaths is safe, a review has found.
Surgery was suspended for two weeks at Leeds General Infirmary's paediatric heart unit after data suggested a higher death rate than average.
A year-long NHS England review has concluded the unit "does not have an excessive mortality".
But it also found that some families of very sick children received poor care.'Running well'
Operations at the hospital's unit were suspended on 28 March 2013 after NHS England raised concerns about data on mortality rates at the centre.
The suspension came just a day after a decision to stop children's heart surgery at the hospital - as part of an England-wide reorganisation of services - was quashed in the High Court.
Operations were allowed to resume at the unit on 10 April last year after an investigation revealed the mortality data was flawed.
A two-pronged review was launched by NHS England, one part examining the unit's mortality rates and the other looking at the experience of 16 families who felt they had been let down by the unit.
That review has found mortality rates, focusing on the 35 children who died after surgery between 2009 and 2013, show the unit "does not have an excessive mortality".
Mike Bewick, NHS England's deputy medical director, told Radio 4's Today programme that, although services at Leeds were found to be safe, he was "devastated" by some of the findings of the review.
End Quote Michelle Elliot Her daughter was left with brain damage after treatment at Leeds
It's very unfair, I feel, to say it has a clean bill of health because it doesn't”
He apologised to the families of sick children who were found to have received poor care, and insisted healthcare was "moving towards a much more compassionate type of medicine".
Politicians needed to work more closely with the medical profession to "align what's best practice", he said.
Sir Roger Boyle, the previous head of the National Institute for Cardiovascular Outcomes Research (Nicor), resigned as England's so-called "heart tsar", when Nicor flagged concerns about Leeds last year.
He later said he would not send his own child there.
Almost a year ago, the children's heart surgery unit in Leeds was plunged into crisis when surgery was suspended after safety concerns were raised with NHS England.
The unit was allowed to resume work but a broader inquiry was set up into patient deaths and how complaints were handled.
Today's report confirms the unit is safe and running well, but finds serious problems with the care offered to 16 families of very sick children.
Their testimony is heart-rending. The report details how, at a time of extraordinary stress, they experienced a lack of compassion, poor counselling and badly handled complaints.
Hundreds of children are treated at the Leeds unit every year so 16 families represents a tiny minority who had a bad experience.
But the report makes clear that every single one of them is entitled to the best possible care.
In the words of this report, their stories need to be not just listened to but heard.
He told the Today programme the behaviour of politicians who had campaigned to save the unit had been "downright disgraceful" and that children should be cared for in an "atmosphere that was caring and compassionate".
He said there had been an "overwhelming consensus" in about 2006 that the NHS needed fewer larger child surgical centres that could provide a "comprehensive and safe service".'No support'
Michelle Elliot, whose daughter Jessica was left with brain damage after her treatment at Leeds, said changes still needed to be made.
"There are numerous recommendations for the trust to work on as part of that report," Ms Elliot said.
"So it's very unfair, I feel, to say it has a clean bill of health because it doesn't."
Her daughter had a stroke as she awaited a heart transplant and remains in a wheelchair.
"We're the lucky ones. She's still with us," Ms Elliot said.
"There are many families in the group whose children and babies have died."
She added there had been "a lack of kindness, a lack of action, a lack of belief in the parents".
One parent, who has not been named, told investigators they were given "no support" by staff after their daughter had died.
"We were given a leaflet," they said.
End Quote Fragile Hearts, which represents parents who have lost children or seen them suffer medical harm
We hope that nobody else ever has to walk in our shoes”
"Nobody asked how we were getting home in the early hours of the morning."
Another parent described how a book had gone missing in which their son had been writing about his experiences before his death.
A fourth, a mother, described how she felt pressurised into having an abortion, which was against her beliefs as a Muslim.
Julian Hartley, chief executive of Leeds Teaching Hospitals NHS Trust, said he was "so sorry" for those families and offered them a "heartfelt apology".
He said: "Although we treat 10,000 children a year and do 800 operations, one poor experience is one too many."'Trust has learned'
A number of actions had already been taken to improve service at the unit, Mr Hartley said.
These included the appointment of three permanent consultant surgeons, a full review of how complaints are handled and the opening of a new £1.75m children's intensive care unit.
"We commit to making sure we derive every ounce of learning from their experience," said Mr Hartley.
Sharon Cheng, of the Leeds Children's Heart Surgery Fund, a charity giving support for children and adults born with congenital heart defects and their families, said she was "surprised" to read the critical comments.
"The trust has learned from this. I know things have been put in place since to address these issues and my sympathy goes out to those families. The whole country has to learn from this."
But Fragile Hearts, a group representing parents who have lost children or seen them suffer medical harm as a result of heart surgery, said the report was "evidence the culture which exists at LGI heart unit takes no account of the emotional, psychological or spiritual needs of children or parents".
In a statement, Fragile Hearts said its members did not believe the changes introduced at the unit went far enough.
"We believe that the changes required are not only in the skill and care provided but in the attitude of those care providers.
"We therefore call for systemic changes within the unit, but above all we hope that nobody else ever has to walk in our shoes."
The Children's Heart Foundation said other concerns, which it had raised with the Care Quality Commission in 2011, had been "totally missed from the report".
Chief executive Anne Keatley-Clarke said: "These include the quality of heart surgery and repeat operations, along with the morbidities of children who had received treatment at Leeds General Infirmary."