Other FH initiatives

FH Audit Project in Medway

Increasing detection of patients with FH in the primary care setting could lead to better management through prevention of cardiovascular events and identification of additional ‘at risk’ relatives for screening and evaluation.  HEART UK has partnered with Medway Clinical Commissioning Group and Sanofi to deliver this exciting project in Medway, Kent. Following the development and widespread use of an audit prompt used in general practice, a nurse has been employed to help identify cases of FH and provide support and advice for their ongoing management.

An interim report on the project, Systematically identifying familial hypercholesterolaemia in primary care, demonstrates impressive results, and was launched at the HEART UK Conference in July 2014. A full report will be published in October 2014.

FH paediatric register

HEART UK is a partner in the FH paediatric register, run by the Royal College of Physicians. The FH paediatric register aims to establish how effective current therapies, offered for FH, are in children with the condition. This is an electronic register, with annual monitoring of the effects of current and new treatments on growth, puberty, liver function and long term safety. HEART encourages clinicians who see children with FH to register their patients.

NICE Implementation Advice

In January 2012, NICE published its implementation advice, providing tools to further the rollout of the FH Guideline’s recommendations.

» View the NICE FH: Implementation Advice

Freedom of Information requests

In early 2010, HEART UK sent Freedom of Information (FOI) requests to Primary Care Trusts, asking questions on their implementation of the NICE Guidelines on FH.

This work was made possible by an educational grant from MSD. The results showed that, at this point in time, too little is being done towards implementation of the NICE Guidelines.

» Download the data analysis (PDF)
» Download the presentation of results (PDF)

Royal College of Physicians Audit

The National Audit of the Management of Familial Hypercholesterolaemia is being undertaken by the Royal College of Physicians with funding from HEART UK, the British Heart Foundation, Cardiac Network Co-ordinating Group Wales and the Royal College of Physicians.

It aims to assess the implementation of the 2008 NICE FH Guideline.

» VIew the latest audit findings

Primary Care Service Framework on Familial Hypercholesterolaemia

HEART UK participated in the development of this framework for FH

» Download the Primary Care Service Framework on FH (PDF)

Health Committee Inquiry into NICE

In October 2012, the House of Commons Health Select Committee began an inquiry into the work of NICE. View HEART UK’s response.

A story of Hope

A Story of Hope is a short four-minute film about a family with a history of Familial Hypercholesterolemia.

Buddy’s FH Adventure

This e-book is aimed at children aged 7 and older. The book is published through Me Books, and is free to watch after registering.

FH report

HEART UK's assessment of London Health & Wellbeing Strategies highlights that cholesterol is often overlooked as a public health issue. 

FH Video

Video showing why Familial Hypercholesterolaemia (FH) needs to be addressed.