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Heart survival rates for children go online

Parents can now check up on specialist units

Parents can now look up the survival rates for specialist heart hospitals that treat children.

Information relating to units treating congenital heart disease has been put online by the Information Centre for health and social care.

The move comes after the Bristol Inquiry, whose report was published in 2001, found parents should have the right to more information.

The report examined the care children needing cardiac surgery received at Bristol Royal Infirmary between 1984 and 1995.

It found that a third of children received ‘less than adequate care’ and between 30 and 35 more children died there between 1991 and 1995 than would normally be expected.

Patient information

The Congenital Heart Disease Website is a world first and lists all UK units that treat the disease.

The site is divided into sections, such as information for patients, national data, and performance by operation.

It also lists telephone numbers, the names of consultants and links to hospital websites.

Specialists from The Society of Cardiothoracic Surgeons of Great Britain and Ireland and The British Congenital Cardiac Association helped develop the site, which was funded by the Healthcare Commission.

Bristol inquiry

Clinicians and hospitals provide information for the website to the Information Centre’s Central Cardiac Audit Database (CCAD).

IC Chief Executive Professor Denise Lievesley said: ‘This is the first time any country in the world has made information of this type available to parents and carers and we hope it helps and reassures them.

‘Ten years after the (start of the) Bristol Inquiry, the site has been developed with considerable input from surgeons and medical teams across the country and draws on data from the national audits that we carry out on heart treatment.

‘We hope parents find the website a useful, additional source of information and that it helps them when they are discussing their child’s treatment with their doctor or specialist.’

Cardiac surgery

Head of clinical audit at the Healthcare Commission, Jonathan Boyce, said: ‘Cardiac surgery on babies and children is often complicated and always stressful for the families involved.

‘The information being made available publicly for the first time is an important step on the journey to greater partnership between patients and their doctors.

‘It should prove useful to parents and their GPs as well as those responsible for running those services.’

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