National
audit of the management of familial hypercholesterolaemia
(FH)
 Executive Summary
Final Report
The Department of Health has commissioned the Clinical Effectiveness and Evaluation Unit (CEEU) of the Royal College of Physicians to carry out a pilot study for a national audit of the management of familial hypercholesterolaemia (FH). The commission follows on from recommendation (3) of the recent Department of Health "FH cascade testing audit project". In addition, the pilot follows and builds upon the NICE guideline "Familial hypercholesterolaemia; identification and management". The NICE guidance for the management of FH was published in August 2008. It is anticipated that the findings of this pilot could be used to devise a national audit and also make some early recommendations on potential bottle-necks.
The delivery of services for children was a particular concern. As the expertise for managing FH and prescribing statins in children is within the sub-speciality of paediatric inherited metabolic disease, the BIMDG and the Royal College of Paediatrics and Child Health (RCPCH) were identified as stakeholders for this project. The BIMDG and the RCPCH nominated Dr Chris Hendriksz from Birmingham Children's Hospital to represent them. The report is now in the public domain for further action; as expected the lack of services for children was identified as a concern. The next challenge will be to address this issue on a national level and plan how services should best be delivered to children and young people affected by FH, recognising that other specialties may also be involved with their care.
An executive summary and the full report are attached for further information.
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