HEART UK warns of cholesterol timebomb in England due to NHS genetics investment failings

Aug. 8, 2011 - PRLog -- HEART UK, the Cholesterol Charity, has warned that failures to implement genetics testing guidelines for raised cholesterol are costing lives in England – the only country in the UK where substantial genetics investment has not been undertaken.

The National Institute for Clinical Excellence (NICE) guidelines on Familial Hypercholesterolaemia (FH) in 2008 made recommendations that cascade screening should be available to people who have abnormally high cholesterol. Cascade screening employs blood cholesterol testing and genetic tests to screen the index case, then close relatives where a case is found.

Professor Sir John Bell, the Government’s chief genetics adviser, said recently that the NHS is “completely unprepared” to capitalise on advances in genetics medicine.

More than 120,000 people in Britain have a form of inherited high cholesterol called FH which can cause premature death as those as young as 30 – and only 15% of those with the condition are known.

Dr Bob Cramb, Chair of HEART UK, said: “Unlike a lot of genetic conditions, FH is something that can be easily treated. Once it is identified, all family members can be tested. We find ourselves in a position that simply defies logic. We’ve got NICE clinical guidelines to help us manage the condition, but they’re being ignored. The Dutch have developed some brilliant software to register patients and follow-up with FH families. But very few clinicians in England have access to this technology and appropriate genetic testing, which is creating a timebomb for those who may have the condition.”

Investment in health services and political support have ensured that there has been progress made on FH in Scotland, Wales and Northern Ireland and Prime Minister David Cameron is said to keen to put genetics at the centre of NHS treatment and diagnosis of major diseases.

Bob Cramb added: “HEART UK has been at the forefront of efforts to get the NICE guidelines implemented including running events to get local buy-in; holding a national conference and produced a toolkit for Primary Care Trusts.

“We need a national programme using dedicated funding, to kick start a proper infrastructure for people with FH or those who need to be tested. Time and time again HEART UK has seen local commissioning bids stumble at the last hurdle. Short-termism among managers makes them reluctant to buy new technology that will ultimately save lives and save money.”

HEART UK is the UK's only cholesterol charity and dedicated to providing support for people with inherited high cholesterol. They also work with governing bodies and medical stakeholders to develop better methods of detection and treatment for cholesterol related conditions.

HEART UK Chief Executive Jules Payne said: “HEART UK is passionate about preventing premature deaths caused by cholesterol and we are preparing a new FH Report, which we’ll be launching early next year. This Report will include new economic modelling that will highlight both the health and economic advantages of finding cases of FH and treating them early on.

“We’re delighted that the Prime Minister has indicated his support for the NHS doing more in genetic medicine, and we look forward to presenting our report to Mr Cameron and his Health Ministerial Team.”

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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

Two thirds of 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