Sunday, 19 November 2017

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Familial Hypercholesterolaemia (FH) Service


Published on 04 May 2017

Cardiac Nurse Team - LandH
NHSWI Cardiac Nursing Team (Lewis & Harris)

The award winning NHS Western Isles Cardiac Nursing Team has received funding from the British Heart Foundation for an 18 month specialist nurse post to help identify people in the Western Isles who have a genetic condition that may cause early heart disease. 

Familial Hypercholesterolaemia (FH) is an inherited condition that is passed down through families which can lead to early cardiovascular disease if not treated.

It is characterised by high cholesterol levels in an individual and usually some members of the individual’s family will have a history of early onset heart disease (heart attack, angina or stroke) or high cholesterol.  FH is the main inherited cause of early heart and circulatory disease if left untreated.

Sadly, for some the first indication that they have FH is a heart attack in their 30s, 40s or 50s which can be fatal.  It is thought to affect 1 out of every 250 people in the UK, is more common than Type 1 Diabetes in children, which affects around 1 in 500 children. However only 7% of those affected have been identified.

The BHF and NHS Western Isles are working together to identify new cases of FH within the Western Isles to prevent early heart disease or premature death in those affected.

The new FH Service works with GP practices where if a GP finds an individual with high cholesterol or who has a first degree relative with FH, they will be offered a referral to the FH Service for assessment. 

If certain criteria are met, a DNA test is then offered by the FH Nurse to confirm genetic diagnosis. In the event that FH is diagnosed, cholesterol lowering medication must be started in combination with diet and lifestyle changes.  Unlike some forms of high cholesterol, FH cannot be controlled by diet and improved lifestyle measures alone. Medication is the gold standard treatment.

Once an individual is identified as having FH, the FH Specialist Nurse will consult members of their family offering DNA tests to adults and children to identify more cases. This is known as cascade testing. Children as young as five are eligible for DNA tests in the Western Isles.

Norma MacLeod, who was appointed as the BHF FH Specialist Nurse for the Western Isles, said “It’s really important that these individuals are identified as young as possible. The earlier treatment starts the better the outcomes are for people with FH.  I have met some families who have very sadly suffered premature deaths in previous generations. If science had discovered the genetic mutation and treatment was available to them then, those deaths could have been prevented.

“It’s extremely rewarding working with these families as without cascade testing and treatment these individuals and families might have suffered the same fate as the generations before them.”

The BHF has funded the first 18 months for an FH Nurse, thereafter the NHS Western Isles Cardiac Nursing Team will continue the role to provide an ongoing service to people with FH living in the Western Isles.

If you have a family history of heart attacks or stroke below the age of 50 in a second  degree relative (aunts, uncles, grandparents) or below the age of 60 in a first degree relative (parents children and siblings) and are worried about high cholesterol, please speak to a member of your primary care team about your concerns

For further information please contact Norma MacLeod, BHF FH Specialist Nurse, Stornoway Health Centre, Springfield Road, Stornoway.  Tel. 01851 763331 or email: This email address is being protected from spambots. You need JavaScript enabled to view it.