Developing testing pathways, a case finding approach and supporting education and training in Primary Care.
What is FH?
Familial Hypercholesteraemia (FH) is an inherited condition that is passed down through families. It's caused by a change in one or more genes, making the liver less able to remove excess 'bad' cholesterol, known as LDL. Early identification can lead to treatment and management that greatly reduces the chances of developing heart disease.
Around 270,000 people in the UK are estimated to have FH, but many don’t know they do. Early identification and management can greatly reduce the risk of heart disease.
What are we doing?
We are working to support Primary Care to identify patients at high risk of FH, to enable earlier treatment and management .
We are doing this through the development of Primary Care pathways for FH, establishing a primary care case finding approach, and provide education, training and support to primary care.
Who are we working with?
- Eastern AHSN
- Norfolk and Norwich University Hospitals NHS Trust
- PRIMIS (University of Nottingham)
- Integatred Care Boards (IBCs)
- Primary Care
Progress and next step
- FH Information Zone (resoruce for healthcare staff) published on the East Genomics website.
- Specialist FH Nurse at NNUH has led development of search tool/case finding approach including integration of FAMCAT 2 into ECLIPSE Live.
- FH Hub to go live in Q1 2023/24.
Watch Dr Kate Downes, our Clinical Lead for Rare and Inherited Disease, talk about our work on FH at a Showcase event we held in May 2023
Meet our team
- Dr Kate Downes, Lead Scientist for Rare and Inherited Disease, East GLH (Katedownes@nhs.net)
- Shelina Rajan, Clinical Nurse Specialist – Familial Hypercholesterolaemia & Lipid Management (email@example.com). Please note: we are unable to help with medical or health enquiries from members of the public. If you are concerned about your potential risk from FH, please speak to your GP in the first instance.
- Katy Blakely, Regional Programme Manager, East GMSA (Katy.firstname.lastname@example.org)
Information for patients
Information for healthcare staff
- FH Information Zone
- New FH genetic testing pathway
- FH Clinical pathway Initiative (opens in a new tab) (Genomics Education Programme)