Have a Heart: We take a look at the history of the Children's Heart Surgery Fund in Leeds

It was the ambitious vision of one heart surgeon which led to the creation of the Children’s Heart Surgery Fund at Killingbeck in 1988.

Duncan Walker, a congenital cardiac surgeon in Leeds, wanted the city’s hospital to be able to use revolutionary equipment to move the service forward and save more babies’ and children’s lives.

Because of the limited resources at that time in this speciality - much like today - he decided to set up the charity to help generate those vital funds.

And the public immediately took the cause to heart.

Within one year, enough money had been raised to enable a new Paediatric Intensive Care Unit (PICU) to be built – the first of what has since become an impressive list of achievements, thanks to the generosity of fundraisers.

However Mr Walker could never have imagined the challenges that lay ahead, when the future of the unit itself was called into question.

In 2011, Children’s Heart Surgery Fund was forced to balance its attention away from fundraising to saving the unit from closure.

What followed was the ultimate David and Goliath battle, with the small charity punching well above its weight as it fought on behalf of the team which had saved so many lives.

A national review had decided children’s heart surgery should only be carried out in a small number of specialist units, to try to improve outcomes.

It followed a scandal at Bristol Royal Infirmary where small children and babies had died after undergoing heart operations in the 1980s and 1990s.

But of the four configurations put forward for the select group of specialist units, only one included a continuing role for operations in Leeds.

The Leeds-based Children’s Heart Surgery Fund rallied behind the unit and immediately set up the Save Our Surgery (SOS) campaign, spearheading the fight to protect children’s heart surgery at the hospital and leading meetings with regional cross-party MPs and health chiefs.

They organised a demonstration at the Royal Armouries in May 2011 and the next month, handed over a petition boasting 600,000 signatures to Downing Street.

In September 2011, SOS joined families from across the region to stage a protest outside the review’s public consultation meeting in Leeds, to try and convince the decision-makers to keep the unit open.

But the city’s worst fears were realised in July 2012 when health bosses confirmed the unit was one of those to be affected.

If anything that devastating setback merely sharpened the charity’s resolve to keep fighting.

The Save Our Surgery campaign was immediately stepped up, with the charity announcing it would be taking legal action against the Department of Health.

The move was a brave - and costly - one but their hard work paid off as, in March 2013, a High Court judge upheld the charity’s challenge.

That same day, Prime Minister David Cameron urged NHS bosses to “look very carefully” at the ruling.

The fight was boosted once again, three months later, when an independent review ordered by the Government found the decision to earmark Leeds for closure had been “based on flawed analysis”.

Health secretary Jeremy Hunt instructed the Department of Health to rerun the review - but the city’s unit was still not off the hook, with the case for streamlining units remaining firmly on the table.

The breakthrough finally came in the summer of 2015 when NHS England agreed a new list of “national standards” for heart units - many of which were already being met at LGI.

And in July 2016, the NHS announced that, although the number of centres nationwide performing adult and children’s heart surgery was to be cut from 13 to 10, LGI would be among the units staying open, as long as it continued to meet the standards.

In 2017, NHS England’s board confirmed that the unit was doing exactly that and gave it the green light to stay open - marking the end of a saga which showed just what this charity, and the city, was capable of when the future of children’s heart surgery in Leeds, and potentially children’s lives, were under threat.

But the pressures remain, and the unit - and charity - are working hard to keep up to date with NHS standards and the latest equipment.

Last year the unit opened a ground-breaking new ‘hybrid theatre’ which will offer specialist care to future generations of children.

It was made possible through the charity’s successful ‘Keeping the Beat’ campaign, which helped raise over £500,000 in donations towards the £1.9m equipment.

Sharon Milner, CEO of Children’s Heart Surgery Fund said: “I would like to pay tribute to everyone who has fundraised and campaigned for CHSF since 1988, not only securing the Leeds Congenital Heart Unit (LCHU) for the immediate future but providing the life-saving equipment for the revolutionary hybrid theatre which opened last year and is delivering on its promises every day.

“The LCHU staff really are the best in their field, from surgeons through to staff nurses, play specialists to psychologists, and their skill and passion is never in doubt.

“I am proud to lead my team into a new decade, to face the challenges ahead in a very complex field. With your continued help - which we need now more than ever, we can continue our mission to support hearts for life. Thank you from our hearts to yours.”

2013

Heart surgery for children was dramatically suspended at LGI in March 2013 - at the height of the campaign to stop the service being permanently axed.

The step was taken after NHS bosses said recently revealed data had indicated high death rates at the unit.

However, after an initial “rapid review”, no safety concerns were found and surgery was restarted.

The death rates’ data was shown to be incorrect soon afterwards.

To donate:

Visit chsf.org.uk/donate to give a one-off donation or to set up a regular, direct debit donation.

Or pay cheques to: Children’s Heart Surgery Fund at 3 Oxford Place, Leeds, LS1 3AX