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Congenital heart disease standards

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Document Type

Standards

Summary

Congenital heart disease (CHD) is a general term for a range of conditions that affect the way the heart works. The term ‘congenital’ means the condition is present from birth. CHD affects up to 8 in every 1,000 babies born in the UK.

We have developed standards to support CHD care in Scotland.

The standards draw on current evidence, best practice and stakeholder recommendations.

Overview of standards 

Standard 1: NHS boards demonstrate leadership and effective governance to deliver their local CHD service.

Standard 2: People with CHD can access information that is right for them and are supported to participate in decisions about their care.

Standard 3: Staff have the training and skills to deliver the right care and support for people with CHD.

Standard 4: NHS boards provide a compassionate and understanding CHD service and ensure people with CHD can access support if they need it.

Standard 5: NHS boards have processes and pathways in place to support early diagnosis and effective management of fetal CHD.

Standard 6: NHS boards provide high quality outpatient care for people with CHD.

Standard 7: NHS boards ensure that people with CHD have access to seamless interspecialty care.

Standard 8: NHS boards ensure that people with CHD experience a seamless and person-centred transition between paediatric and adult services.

Standard 9: Women/people with CHD who may become pregnant receive preconception care, counselling and specialist antenatal care.

Standard 10: NHS boards ensure that emergency care for people with CHD is safe and effective.

Standard 11: NHS boards provide high quality and compassionate palliative and bereavement care.

CHD standards self-assessment tool 

To support the standards, we have published a self-assessment tool.

This tool can help those who manage and implement CHD services:

  • measure these services against the standards
  • create a plan for improvement

You can give us feedback on this tool at the form below:

CHD standards self-assessment tool: online feedback form

Bereavement support 

The death of a child is one of the most traumatic experiences any family can go through. If you have been affected by any of the issues raised in our standards, there is support available for you.

Visit the Scottish Government website for more information:  

Support if a child or baby dies