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Their median age is 32 years and median duration of loss to follow-up is 22 years; most had been lost before Adult Congenital services had been consolidated in their present form.
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The recent Safe and Sustainable Paediatric Surgery Review of congenital heart services 1 recommended changes to the provision of paediatric cardiac surgery services in the UK.
There's just one month to go until the consultation on the future of children's congenital heart services closes - and the NHS is calling for more people to have their say.
The review encompasses for the first time adult and children's congenital heart services, and envisages that demand will grow as more children born with heart defects survive and need treatment as adults.
The body, the paediatric and congenital cardiac services review, was asked to settle a question at the centre of the Bristol tragedy, and which has been raised many times over the years: how many operations should be carried out by a children's heart unit each year for the surgeons to be expert in the complex techniques?
Changing focus in Belfast to elective and lower complexity adult congenital cardiac services.
There is to be an external review of children's congenital cardiac services in Belfast.
A review of adult congenital heart services is underway, and another looking at children's neurosurgery.
Health Minister Edwin Poots said the Health and Social Care Board planned to carry out a review of congenital cardiac services for children.
Families campaigning for the retention of children's congenital heart services in Northern Ireland believe they have been thrown a lifeline.
"While this wasn't the announcement many expected, or wanted, today, it is positive that we are another step closer to reaching a final decision on the future of paediatric congenital cardiac services in Belfast".
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