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Survival rates of congenital heart disease is now available online

Healthcare Commission : 04 June, 2007  (New Product)
For the first time ever parents of children with congenital heart disease can now look up detailed information about survival rates at every specialist heart centre in the UK.
The information is available via a new website launched by The Information Centre for health and social care (The IC).

In a world first, the Congenital Heart Disease website has been developed by the leading independent provider of health information in order to help parents and carers make informed decisions about their child's care.

The initiative comes ten years after the Bristol Inquiry and, by presenting the results of interventions for public and professional scrutiny, is designed to reassure parents of the quality of care available to their child.

Specialists from the Society for Cardiothoracic Surgery and The British Congenital Cardiac Association helped develop the website which was funded by independent health watchdog the Healthcare Commission.

The website profiles every congenital heart disease centre in the UK, including the number and range of procedures they carry out and survival rates for the most common types of treatment.

Information on the site is from data collected by The IC through its Central Cardiac Audit Database (CCAD) which is used to collect information for the National Heart Disease Audits.

The IC's 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 when they come to make important decisions about their child's treatment'.

'Ten years after 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 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'.

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'.

President of the Society for Cardiothoracic Surgery and commissioner for the Healthcare Commission Sir Bruce Keogh said: 'Just over a decade ago the sad events in Bristol cast a cloud over British cardiac surgery'.

'Now this comprehensive website, which is the first of its kind in the world, shows that those involved in the highly complex area of children's heart surgery have risen to the challenge by presenting the results of their interventions for public and professional scrutiny'.

'Parents can be reassured that the quality of treatment in the UK is as good, if not better, than anywhere else in the world'.

Professor Roger Boyle, national director for Heart Disease and Strokes at the Department of Health said: 'I really welcome this addition to the suite of clinical information that is made available to the public about heart disease and how it is managed'.

'To analyse and make sense of the many complex operations that are performed for children with heart disease requires a huge effort by the clinical community'.

'I am sure that having this information available for parents and families will be welcomed by all concerned'.

Consultant paediatric cardiac surgeon at The Newcastle upon Tyne Hospital NHS Foundation Trust said: 'Surgery for congenital heart defects is very much a team effort'.

'We hope that this information will provide parents with reassurance that their child is receiving high quality care wherever they live in the UK'.
chief executive of the Children's Heart Federation Anne Keatley Clarke said: 'The publication of this data is a really important step in giving parents access to the information they need in order to make decisions about their child's treatment'.

'We hope that this information will also help to focus the current debate about the future of the paediatric and congenital cardiac service'.
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