1.  INTRODUCTION

  The Children's Heart Federation is a national charity and the umbrella body for voluntary organisations working to meet the needs of children and young people with congenital and acquired heart conditions and their families. We provide information and support, medical equipment and grants, and campaign to improve the clinical and social care of children with heart conditions.

  The Children`s Heart Federation believes that there are a number of ways in which the NHS can help to achieve a reduction in health inequalities for children and adults with congenital heart conditions. We have identified the following objectives as being central to improving health inequalities for children and adults with congenital heart condition:

—  All children with heart conditions should receive the same high quality of treatment

—  All adults with congenital heart disease should receive a high standard of ongoing care and treatment.

—  Pregnancy should be seen as a key point of intervention in terms of creating a healthy environment for the foetus and hence reducing the risk of birth defects.

—  All children with heart conditions and their families should get the right services and support, should be fully included in society, and have access to an education system that meets the needs of each child.

2.  FACTUAL INFORMATION

—  One in every 145 children is born with a heart condition.

—  Congenital heart conditions are the most common birth defect in the UK, and a leading cause of birth-defect related deaths world-wide.

—  There are currently about 135,000 young people living with a heart condition.

—  Research suggests drinking alcohol and taking drugs during pregnancy could increase the risk of congenital heart disease.

3.  RECOMMENDATIONS FOR ACTION

  In view of the above, we would urge the Committee to consider the following recommendations in their inquiry:

—  To reorganise paediatric cardiac services in line with recommendations from the Report of the Paediatric Congenital Cardiac Services Review Group, published in December 2003 following the Bristol Inquiry.

In order for centres to provide a high quality of treatment to patients, their teams need to be performing a large quantity of procedures each year. The rationale is that a high number of procedures will ensure that surgeons maintain their competencies. The Children`s Heart Federation is particularly concerned that there are currently some paediatric cardiac centres with only a single consultant surgeon, bringing into question the quality and safety of treatment for patients. We believe that the current arrangement of paediatric cardiac services needs to be reorganised to centralise expertise and resources such that every centre is capable of providing a high quality and safe treatment to all children with heart conditions.

—  Young people and adults with congenital heart conditions should receive uninterrupted and coordinated care covering the transition from children's to adults services, as well as between specialist and local centres, primary care, obstetric care and other special needs.

—  Lifestyle choices that prospective mothers can make may reduce the risk of giving birth to a baby with heart defects. We therefore see the work of public health services targeting lifestyle choices, such as smoking, as being a key contributor in the quest to reduce health inequalities.

—  A specific duty on local authorities and education providers to assess and provide for the needs of children with heart conditions and their families. The health difficulties of children with heart conditions are not always obvious. As a result, any learning, physical, and emotional difficulties may be easily overlooked or misunderstood. This can make it even more difficult for parents to get the help and support that their child needs.

January 2008