Gazette Live - Teesside families frustration over children's heart surgery decision

Teesside families today spoke of their frustration as children’s heart surgery units face further uncertainty

Teesside families today spoke of their frustration as children’s heart surgery units face further uncertainty.

Health Secretary Jeremy Hunt yesterday suspended plans to close three units in Leeds, Leicester and west London.

The move once again calls into question the future of the Freeman’s children’s heart unit in Newcastle.

And it means yet more delays for plans to concentrate expertise by developing specialised centres.

Dawn Clasper’s daughter, Evie, was born with hypoplastic left heart syndrome – a condition where the left side of the heart fails to develop properly in the womb.

About to celebrate her third birthday – a milestone they once thought she may never see – the youngster has undergone numerous life-saving operations.

But Dawn, 41, said: “My daughter’s heart journey is far from over.

The Ingleby Barwick single mum-of-four, who is also a community nurse, said: “Her prognosis really is a transplant.”

With continued uncertainty surrounding the Newcastle unit’s future makes Dawn anxious.

With more surgery due in July she said: “We rely on the Freeman. I can’t bear the idea it might not be there for all of her journey.”

The original decision to close the three units was part of a general review of services across England.

The plan was to reduce the current 10 units to seven.

The Safe and Sustainable Review, concluded that Leeds General Infirmary (LGI), Glenfield Hospital in Leicester and the Royal Brompton in west London, should stop providing paediatric cardiac surgery.

But Mr Hunt said the local health scrutiny committees in the areas affected by the closures expressed concerns about the review process and the matter was referred to the Independent Reconfiguration Panel (IRP).

Mr Hunt said: “The IRP strongly agrees with the case for change.

“However, the report also concludes that the outcome of the Safe and Sustainable Review was based on a flawed analysis of the impact of incomplete proposals and leaves too many questions about sustainability and implementation.”

Speaking in the House of Commons, the Health Secretary said he had asked NHS England to continue the process of looking into the reorganisation children’s heart surgery and asked them to report back by the end of July.

Acklam dad Alan Formby Jackson said this latest move means yet more delays in establishing the best possible care for sick children.

He and wife Rachel were told their son, Theo, had heart problems within hours of him being born.

Diagnosed with total anomalous pulmonary venous drainage (TAPVD) he had his first operation at the Freeman at just 10 days.

He underwent a second operation at six months and a third at 11 months.

Like so many other families of sick children, Alan said the Freeman became a big part of their lives.

Today the seven-year-old is fighting fit, only going back for check-ups every two years.

Given their own experience Alan and Rachel, who also have a daughter Izobel, 13, follow the saga surrounding children’s heart units with interest.

Alan said: “The idea behind what they are trying to do is a good one, developing more specialised hospitals to do world-class work.

“But due to the delays it is going to stop that from happening and the real quality care is not going to be there because they can’t decide what they want to do.”

The 39-year-old said: “It is frustrating and annoying as it feels the initial review was a waste of money. These are intelligent people, but somewhere along the line something has gone wrong.

“You can only hope some of the information they found out is of use so it wasn’t a complete waste of time.”

Before Mr Hunt made his announcement, Prime Minister David Cameron said: “I think we have to be frank with people that we can’t expect really technical surgery – like children’s heart operations, to be carried out at every hospital in the country.

“As the parent of a desperately ill child, wanting to get the best care for that child, you need to know that you’re getting something that is world best.

“For really technical operations you can’t get that everywhere.

“Clearly the conclusion is that this process, which started in 2008, hasn’t been carried out properly so we need to make a re-start.”

 

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