FH: Planning and delivering care

Resources and guidance to help you diagnose and manage familial hypercholesterolaemia (FH) patients effectively.

FH is a genetic condition affecting approximately 1 in 250 people, resulting in high cholesterol levels from childhood and a high risk of early heart disease.

The BHF has invested £1.5M in tackling FH across the UK over a two-year period. Over this time, we have collected a wealth of information around setting up and delivering FH services from healthcare professionals and those who plan healthcare services.

We have collected this information into resources, along with other useful links to help you plan and deliver FH services effectively and efficiently. 

Resources for planning FH services

Our programme to implement FH cascade testing across the country revealed several local- and system-level enablers and barriers. You can read about these below in an independently commissioned report that gathered evidence from key stakeholders involved in planning and delivering FH cascade services.

NHS RightCare has produced the cardiovascular disease (CVD) prevention pathway, with the aim of providing local health economies with best practice guidance and case studies for a range of CVD conditions, including FH.

BHF-funded FH nurses have produced a series of conference posters, below, describing different aspects of FH services in their area.

The BHF has commissioned a paper published in the European Heart Journal, looking at the cost effectiveness of cascade testing for relatives of people diagnosed with FH. The paper concludes that cascade testing is highly cost effective and would prevent thousands of premature heart attacks.

Resources for delivering FH services

Heart UK have produced a map, below, of current lipid clinics across the UK.

The Royal College of Physicians (RCP) have created a register, below, to establish how effective current therapies, offered for FH, are in children with the condition. In addition, they have created a map of participating hospitals, also below.

Watch patient perspectives: optimal vs non-optimal FH pathway

FH services differ across the UK, leading to unwarranted variation in patient care. We commissioned three videos showcasing patient experiences of FH services in their area, ranging from a missed diagnosis (non-optimal pathway) to the best possible care (optimal pathway).


Watch: How the BHF are tackling FH through research

At the BHF we fund research into heart and circulatory disease and ensure discoveries from the lab bench make a difference at the patient’s bedside. Here’s one example of how we’ve done just that with FH.


Coming soon

  • Standard operating procedures for FH services
  • Patient/care pathways for FH services
  • Business case toolkit for setting up FH services 
  • Articles of interest around FH
  • How Can We Do Better resource: Cholesterol
  • Pathway linking NHS Health Checks and FH