HEART UK, the cholesterol charity, have spoken out against the stark inequalities in formal diagnosis and treatment programmes for Familial Hypercholesterolemia (FH) in the UK.

FH is a relatively common genetic disorder, affecting one in 500 people who suffer with unusually high cholesterol. If their condition remains untreated, FH sufferers have a much higher premature death rate from cardiovascular disease than the general population.

Research undertaken by HEART UK has shown that while Wales and Northern Ireland have benefited from investment, specialist nursing and genetic testing, Scotland has no joined-up programme and England’s approach remains ad hoc at best, putting lives at risk. This is despite the fact that, unlike many genetic conditions, FH can be diagnosed and treated relatively simply. With appropriate treatment, people with FH can lead normal, healthy lives.

Speaking on the eve of the HEART UK’s 27th Annual Conference in Bristol, HEART UK Chief Executive Jules Payne said: “HEART UK believes that everyone across the country should have the same access to good quality care, regardless of where they live in the UK. Patients are inadvertently part of a health lottery with treatment and diagnosis dependent on where they live.

“Heart disease is one of the UK’s biggest killers and it affects young and old. The progress on FH in some parts of the UK is shameful. We have lobbied the NHS and Ministers extensively, but there is much to be done.”

“England and Scotland need national programmes to manage FH, with national leadership and government investment to provide infrastructure and direction so that we help prevent the number of early deaths attributed to cardiovascular disease, especially amongst young people.”

The HEART UK Annual Conference – ‘Familial Hypercholesterolaemia – Recognised at Last?’ – takes place from July 3-5 and will be held at the UWE Exhibition and Conference Centre, University of the West of England (UWE), NORTH ENTRANCE, Frenchay Campus, Filton Road, Bristol, BS34 8QZ. To confirm your attendance, please call 01543 503 322 or email: wheldonevents@btconnect.com

NOTES TO EDITORS

HEART UK was formed in 2002 following a merger of The Family Heart Association (FHA) and the British Hyperlipidaemia Association (BHA).

HEART UK - The Cholesterol Charity - promotes healthy hearts and better lives by:

· helping and supporting individuals, families and health professionals to understand and control cholesterol conditions and other heart risks

· promoting education and research to improve identification, prevention, treatment and care of cholesterol and lipid conditions

· working in partnership with government, the NHS, industry and other charities

· promoting best practice in addressing inherited and non-inherited cholesterol conditions

Six in 10 adults in the UK have raised cholesterol. Over 120,000 people in Britain have a form of inherited high cholesterol called Familial Hypercholesterolaemia (FH) which can cause premature death as those as young as 30 – and only 15% of those with the condition are known.

People wishing to find out more about FH should contact: HEART UK on the helpline - 0845 450 5988, or visit www.heartuk.org.uk

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Gemma Mejer, Calacus PR on 07730-766195 or gemma.mejer@calacus.com