Familial hypercholesterolaemia (Harefield Hospital)

Clinical nurse specialists

  • Jane Breen (lead)
  • Charis Browne
  • Laura Davis
  • Emma Neves (part-time)
  • Lorraine Priestley-Barnham (part-time) 

An estimated 300,000 people in the UK have familial hypercholesterolaemia (FH), an inherited genetic disorder that can cause early heart disease and lead to premature death. 

Very few NHS trusts employ a full-time cascade nurse specialist for dealing with FH. Jane, Emma and Lorraine work closely with Dr Mahmoud Barbir, who is a specialist in FH and runs regular and comprehensive clinics at Harefield Hospital, one of the only cardiac centres in the UK to do so.

Genetic cascade screening outpatient clinics are run at Harefield and Royal Brompton hospitals, and outreach clinics at Hillingdon Hospital and Cedar Brook Practice in Hayes, to identify FH patients and to provide the screening, information and advice that can help maintain a healthy lifestyle and prevent problems in the future. 

Cascade screening identifies affected relatives of patients with FH, starting initially with first-degree relatives, then progressing throughout the family. 

The nursing teams also manage the follow-up of patients with FH in either the coronary prevention clinic or by telephone.

The familial hypercholesterolemia (FH) team at Harefield has been named 'top recruiter' by the Royal College of Physicians.

Care Quality Commission, 2017

FH genetic screening referral form (pdf, 78.6KB)