Children's heart surgery unit 'safe'

Written By Unknown on Kamis, 13 Maret 2014 | 16.50

13 March 2014 Last updated at 09:27
Baby in hospital bed

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The report found "a lack of compassion", as Dominic Hughes reports

A children's heart surgery unit which was temporarily closed last March due 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'
Continue reading the main story

Dominic Hughes Health correspondent, BBC News


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.

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 following 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.

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.

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, told the Today programme that changes still needed to be made.

"Yes it's safe, but it's not a clean bill of health," Ms Elliot said. "There were numerous recommendations made for improvement."

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."

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.

"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".

"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, from 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."


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