The Familial Hypercholesterolaemia (FH) Identification Hub has been named winner of the Commissioning for Better Experience of Care category at the 2026 Picker Experience Network (PEN) Awards. This programme brings together NHS expertise to find people who may unknowingly be living with FH, an inherited condition causing very high cholesterol and significantly increasing the risk of developing heart disease at a younger age.
Around one in 250 people are thought to have FH, with an estimated 4,400 people in Norfolk and Waveney potentially living with the condition without knowing it. The Hub, delivered in partnership with Norfolk and Norwich University Hospitals NHS Foundation Trust (NNUH) and East Genomics, uses population health data and genomics to proactively identify at-risk individuals. Those identified can be offered specialist assessment and genetic testing, enabling earlier diagnosis and treatment. Identifying one person can also help find other family members who may have the condition.
Since the programme began, more than 1,400 people have been contacted and around 700 have received genetic testing. The approach has achieved a 19% diagnostic yield while reducing costs by 42% compared with traditional secondary care referrals.
“"For patients and families, the impact is simple but potentially life-changing: finding people who are at increased risk before they become seriously unwell means we can offer earlier diagnosis and treatment, helping to prevent heart attacks and strokes and potentially save lives. Because FH is inherited, identifying one person can also help protect the health of their wider family."
Ed Garratt OBE, Chief Executive of NHS Norfolk and Suffolk ICB, stated: “This is fantastic news and thoroughly deserved recognition for an innovative programme that is making a real difference to people’s lives.” He added that the programme aligns with the NHS 10 Year Health Plan, focusing on prevention and utilising data, technology, and genomics for earlier risk identification and personalised care. He also highlighted it as a prime example of cross-NHS collaboration.
The programme has also driven wider improvements in FH identification, with a local Community of Practice contributing to an increase in FH-related contacts across the East Genomics network from 96 to 994 over 12 months. The ICB is developing a business case to expand the approach into Suffolk and exploring partnerships with organisations like Ipswich Town Football Club to raise awareness.
“"Winning this award is a brilliant achievement, but what matters most is what comes next and how we build on what we have learned. We want more people across Norfolk and Suffolk to benefit from earlier identification and treatment, reducing their risk of serious cardiovascular disease and helping them live longer, healthier lives."
Ed Garratt OBE further commented on the programme's role in delivering the ambitions of the 10 Year Health Plan locally, demonstrating the shift towards prevention by identifying risk earlier, intervening sooner, and improving patient and family outcomes.
