Adult Congenital Heart Disease (ACHD)
This is a Lead and Inform Clinical Reference Group (CRG).
Congenital heart disease (CHD) is one of the major categories of illness that, if treated, can restore health and improve quality of life. Adult Congenital Heart Disease (ACHD) affects people aged 16 and over living with a heart defect acquired during fetal development.
The demography of CHD is changing and this is largely as a consequence of successful cardiac surgery in childhood; there are increasing numbers of adults with CHD with a prevalence of more than 4 per 1000 adults. The number of ACHD patients with complex disease is increasing with 10% of the population now falling within the complex group.
Paediatric Cardiac Services
CHD constitutes the bulk of the paediatric cardiac workload. Currently 5–9 babies in every 1000 born in England will suffer from some form of CHD. In 2012 this resulted in 4716 paediatric cardiac surgical procedures. Recent data suggests a continuing increase can be expected in the number of paediatric cardiac surgical procedures beyond previous estimates.
Chair: Rafael Guerrero, National Specialty Adviser (NSA) for Congenital Heart Services
- Susie Gage, Clinical Member
- Petra Jenkins, Clinical Member
- Ying Chee, Clinical Member
- Andrew Parry, Clinical Member
- Owen Miller, Clinical Member
- Robert Yates, Clinical Member
- Victoria Jowett, Clinical Member
- Anna Dinsdale, Clinical Member
- Mohamed Nassar, Clinical Member
- Alison Conchie. Clinical Member
- Nevila Kallfa, Public Health England
- Tracey Williams, Medicines Optamisation
- Bernie Stocks, Highly Specialised Services
- Adam Foster, PPV Rep
- Nicola Morris, PPV Rep
- Rajwant Kaur Singh, PPV Rep
- Marion Eaves, Lead Commissioner
A key part of the CRG’s work is the delivery of the ‘products’ of commissioning. These are the tools used by the 10 Hub Commissioning Teams to contract services on an annual basis.
Urgent Policy Statements
Service specifications are important in clearly defining the standards of care expected from organisations funded by NHS England to provide specialised care. The specifications have been developed by specialised clinicians, commissioners, expert patients and public health representatives to describe both core and developmental service standards. Core standards are those that all funded providers should be able to demonstrate, with developmental standards being those which may require further changes in practice over time to provide excellence in the field.
The following service specifications fall within the scope of this CRG:
- Paediatric congenital heart disease specification
- Paediatric congenital heart disease standards level 1 specialist children’s surgical centres
- Paediatric congenital heart disease standards level 2 specialist children’s cardiology centres
- Paediatric congenital heart disease standards level 3 local children’s cardiology centres
- Adult congenital heart disease specification
- Adult congenital heart disease standards level 1 specialist surgical centres
- Adult congenital heart disease standards level 2 specialist centres
- Adult congenital heart disease standards level 3 local centres
- Cardiothoracic Transplantation Service (paediatrics)
- Pulmonary hypertension service (children)
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