National Review

Congenital Heart Disease National review (2013_2016)

Congenital Heart Disease (CHD) affects up to 9 in every 1,000 babies born in the UK. Diagnosis for some conditions can be made antenatally by ultrasound scan, however some lesions are not detected until the postnatal period and some later in childhood.

Treatment depends on the condition and its severity, many surgical and catheter interventions do not provide a cure and the person may require care throughout their entire lifetime. Complex cases may require further surgeries and interventions throughout life, while less severe cases (such as a hole in the heart) may not require any treatment at all.

In 2015 it was reported that:

10 hospitals performed a total of 3,880 operations and 1,970 interventional catheter procedures on Children in the UK,

24 Hospitals performed 1,010 operations and 1,430 interventional catheter procedures on adults in the UK.

The number of children with CHD is expected to rise, as the birth rate rises. The number of operations and other interventional procedures has been increasing at three to four times the rate of population growth and this is expected to continue.

Congenital Heart Disease is a small speciality but accounts for just over 1% of NHS England’s specialised commissioning budget, Concentrated in relatively few centres, services, compare well internationally and outcomes have improved over the last 10 years.  Approximately 80% of children with congenital heart disease will now survive into adulthood, with the result that for the first time, the number of adults living with CHD is thought to exceed the number of children and young people.

A new CHD review was set up in June 2013 after previous attempts had failed to reach agreement and implement recommendations.  The new review was based on the foundations of transparency, engagement, data, evidence and inclusivity.

The review set itself 6 objectives, these are:

Objective 1: to develop standards to give improved outcomes, minimal variation and improved patient experience for people with congenital heart disease;

Objective 2: to analyse the demand for specialist inpatient congenital heart disease care, now and in the future;

Objective 3: to make recommendations about the function, form and capacity of services needed to meet that demand and meet quality standards, taking account of accessibility and health impact;

Objective 4: to make recommendations on the commissioning and change management approach including an assessment of workforce and training needs;

Objective 5: to establish a system for the provision of information about the performance of congenital heart disease services to inform the commissioning of these services and patient choice; and

Objective 6: to improve antenatal and neonatal detection rates.

From the outset the review was designed to deliver improvements by commissioning against a set of service standards. The scope of these standards for the first time was lifelong and included a whole range of hospital services not just surgery. The standards aim to ensure that all patients have the highest quality of care, while minimising unwarranted variation between centres. The standards are believed to particularly improve patient experience as issues that the patient and public groups found to be important but neglected were included.

Standards were set under a number of headings, these are:

Section A: The network approach

Section B: staffing and skills

Section C: Facilities

Section D: Interdependencies

Section E: Training and Education

Section F: Organisation, governance and audit

Section G: Research

Section H: Communication with patients

Section I: Transition

Section J: Pregnancy and contraception

Section K: Fetal diagnosis

Section L: Palliative care and bereavement

Section M: Dentistry

COVID-19 Advice for North West CHD Network: Advice for patients and families affected by congenital heart disease and children with other heart conditions pleaseclick here