Background

Familial hypercholesterolaemia (FH) is a dominantly inherited genetic disorder affecting approximately 1 in 250 individuals. It is an inherited condition that is passed down through families and is caused by one or more faulty genes. Faulty genes (genetic mutation) make the liver less able to remove excess ‘bad’ cholesterol. This can lead to increased risk of heart and circulatory disease at an early age if not treated. In the UK it is estimated that around 200,000 people in the UK have FH but currently less than 10% of these have been identified.

Diagnosis of FH and treatment early in life can greatly reduce the risk of heart disease by up to 80%. Therefore it is important that people with FH can be found before they have a heart attack. The NHS 2019 Long term Plan set the ambition of finding 25% of the predicted FH patients in England in the next 5 years.

The Cardiac ODN hosts the South London Familial Hypercholesterolaemia Network Group.

The South London Familial Hypercholesterolaemia (FH) Network was set up in April 2023 in response to the delegation of FH the Pan-London network to North & South London ODNs respectively

The group has representation from all relevant South London sites including pharmacist and GP representation covering SWL and SEL ICBs.

Through the Working Group, the ODN supports improvements and innovations in FH across the region. Current focuses include:

  • Cascade Testing – Secure funding for FH Nurse support to cascade testing across the region
  • Lipid Profiles in Cardiology – Introduction of routine lipid profiles in acute cardiology and cardiac rehab
  • Health Inequalities – Implementation of recommendations following publication of KCL’s review into health inequalities in FH
  • Patient Engagement – Explore potential for patient engagement session for FH

If you are a healthcare professional working in Familial Hypercholesterolaemia (FH) in South London and wish to become involved with the Working Group or any other Network activity relating to FH, please contact Gillian.Selman@gstt.nhs.uk

Guidelines and support