Regional Familial Hypercholesterolaemia (FH) Service

The North East and North Cumbria (FH) Service is committed to ensuring all patients with FH receive the best care.

The AHSN work closely with the service as part of the FH and lipid optimising national programme.

The FH service started in 2015 and has 1.5 WTE specialist nurses (Susan Musson and Aimee Potter). Referrals currently come from lipid clinics across NENC. The index or proband patient is then offered an assessment visit or a phone or web call.

Nurse-led Telephone clinics cover South Tees, North Tees, Morpeth, Hexham, Bishop Auckland, Cumberland Infirmary, West Cumberland Infirmary, Queen Elizabeth Hospital, Royal Victoria Infirmary, Centre for Life and Sunderland Royal Hospital.

Paediatric clinics are held in Sunderland Royal, South Tees, Cumbria and Great North Children’s Hospital.

  • Relatives of index patients are contacted via indirect contact using reply slips or direct contact by the FH specialist nurses.
  • If a relative lives outside NENC a referral can be made to other FH services across the UK.

The NHS Long Term Plan has set an ambition of expanding access to genetic testing for FH through the NHS genomics programme, aiming to identify at least 25% of those affected by 2025.

To support these objectives the FH specialist nurses have launched an Advice and Guidance service to help primary care identify suitable patients for genetic testing or via [email protected]