The Royal Free London NHS Foundation Trust has been awarded a grant of more than £155,000 from the British Heart Foundation that will enable it to diagnose and treat patients with familial hypercholesterolaemia (FH) closer to their homes.

The Royal Free London will be among just eight trusts in the country to implement the new pilot service by employing two FH specialist nurses to work in primary care settings such as GP surgeries and local community hospitals.

The FH service at the Royal Free London has continued to grow since the successful launch of the family support centre in 2008, with more than 800 FH patients now registered.

FH is an inherited condition where the level of low-density lipoprotein cholesterol in the blood is higher than normal. It is caused by a defect in the gene that controls the way cholesterol is processed in the body. There are believed to be 120,000 people in the UK with the condition, only 15,000 of whom have been diagnosed.

In line with the Department of Health Cardiovascular Disease Outcomes Strategy for England, which aims to improve mortality rates, quality of life, patient experience and patient safety, the specialist FH nurses will:

  • Work in the community to identify, treat, and cascade test patients with possible FH
  • Provide personalised patient care closer to home
  • Offer information and education on all aspects of FH
  • Perform genetic testing
  • Carry out an audit to demonstrate quality improvement
  • Initiate preventative and early intervention strategies
  • Help reduce waiting times and referrals, and increase equality of access to care
  • Meet quality standards as set out by NICE clinical guidelines for the management of FH

Dr Devaki Nair, consultant chemical pathologist and clinical lead for lipids and cardiovascular risk prevention, said: “Our specialist nurses will pilot a project based in north central and north east London by launching a primary care FH service. This will avoid unnecessary expenditure for the clinical commissioning groups that occurs when patients attend specialist hospital appointments for their long-term care. It also has the benefit of patients receiving their care closer to home.”

Family cascade testing, carried out in primary care, is recommended by NICE clinical guidelines as the most cost-effective method of diagnosing patients, leading to improved outcomes and experiences for individuals and communities.

Darren Harvey, clinical nurse specialist in cardiovascular risk management, said:  “Family cascade testing has previously been challenging within secondary care due to the geographical spread of families. By developing a sustainable service with GPs we will identify more people with FH and enable long-term follow up in the community.”

For more information about the service or new pilot project, contact Zoë Jayne or Julia Lungley on 020 7794 0500, ext. 33500 or by emailing or

Image (L-R): Darren Harvey, clinical nurse specialist in cardiovascular risk management, Dr Devaki Nair, consultant chemical pathologist, Zoe Jayne, specialist nurse in familial hypercholesterolaemia, Julia Lungley, specialist nurse in familial hypercholesterolaemia.


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About the Royal Free London NHS Foundation Trust

The Royal Free began as a pioneering organisation and continues to play a leading role in the care of patients. Our mission is to provide world class expertise and local care. In the 21st century, the Royal Free London continues to lead improvements in healthcare. 

The Royal Free London attracts patients from across the country and beyond to its specialist services in liver, kidney and bone marrow transplantation, haemophilia, renal, HIV, infectious diseases, plastic surgery, immunology, vascular surgery, cardiology, amyloidosis and scleroderma and we are a member of the academic health science partnership UCLPartners.

In July 2014 Barnet Hospital and Chase Farm Hospital became part of the Royal Free London.