Reviewed on : 29 Nov 2024

Reviewed by : Gateway Editor

Expires : 29 Nov 2026

About the West Midlands Familial Hypercholesterolaemia Service (WMFHS)

Covers the whole of the West Midlands region: Birmingham, Solihull, The Black Country, Coventry, Warwickshire, Herefordshire, Worcestershire, Shropshire and Staffordshire

Familial Hypercholesterolaemia (FH) is a common genetic condition that causes a high cholesterol concentration in the blood, leading to an increased risk of premature coronary heart disease and possibly early death.

Untreated, people aged 20-39 with FH have a 100-fold increased risk of death from heart disease compared to those of a similar age without FH.

Early identification of FH is important because if treatment is started early enough, life expectancy is similar to that of the general population.

FH affects 1:250 people and currently only 7% of people with FH have been identified.

The NHS Long Term Plan aims to improve that to at least 25% in the next three years through the NHS genomics programme.

The West Midlands Familial Hypercholesterolaemia Service (WMFHS) is a nurse-led, assessment and genetic testing service commissioned by all West Midlands CCG’s.

Clinics are held in primary care venues across the CCGs and there is an allocated FH Specialist Nurse for Coventry and Warwickshire.

Patients can be referred to the service opportunistically or following a systematic search of GP records.

Bespoke searches have been created for GP clinical systems to identify patients who are eligible for referral.

Referrals should also include patients with clinically diagnosed FH (based on the Simon Broome criteria) who have not had FH genetically confirmed as this enables the cascade testing of family members.

Cascade testing is the process of systematically offering DNA testing to the relatives of affected individuals because someone with FH has a 50:50 chance of passing the condition on to their children.

The benefits of cascade testing are early identification and early initiation of treatment to reduce the risk of premature coronary heart disease.

Patients with confirmed monogenic FH will be referred to UHCW by the FH nurse for cardiac risk assessment

Referral criteria:

• Pretreatment Total Cholesterol 9 mmols/L or more
• To identify a genetic mutation.

Consider referring patients with a cholesterol greater than 7.5mmol/l (see Simon Broome FH Wales Criteria)

PLEASE NOTE:-

FH is characterised by lifelong elevation of LDL-C levels, therefore FH is not usually indicated in patients whose lipids have previously been in a ‘normal range’ (Cholesterol levels can rise considerably in post-menopausal women)

Patients with Triglycerides >4.5 mmol/L are not eligible for referral

Secondary causes of hypercholesterolaemia should be excluded prior to referral including:

• Chronic Liver Disease
• Nephrotic Syndrome
• Hypothyroidism
• Diabetes Mellitus (poorly controlled)

Email referral via eRS (formerly Choose and Book)

Speciality – Endocrinology and Metabolic Medicine
Clinic Type – Lipid Disorders

Service Name – Genetic Screening for Familial Hypercholesterolaemia – Primary Care Based Service – RRK
Referral Assessment Service (RAS)

Send for Triage and attach referral form

Referral Pathway

Clinics

All clinics are held in primary care (GP practices only) across the region

This can be close to their home or their place of work.

Waiting times are usually 2 – 3 weeks, this may increase as referrals increase

The service can review patients for genetic testing prexisting diagnosis of FH based on the Simon Broome criteria.

Current clinic locations:

• Forum Health Centre (Inspires) Coventry
• Woodend Health Centre (Godiva) Coventry
• Market Quarter Practice (Rugby) Rugby

Referrals should me made via eRS using completed referral forms

Contact

For more information, please contact Elaine George, Clinical Manager

Tel: 0121 371 8179

Email: Westmidlands.fhnurses@nhs.net