Experts urge PCTs in England to improve care for inherited high cholesterol condition
The NHS in England is lagging behind the rest of the UK when it comes to indentifying and treating patients with the inherited condition familial hypercholesterolaemia (FH), a leading expert has warned.
In an editorial entitled “a developing English scandal” in this month's British Journal of Cardiology, GP Dr Jonathan Morrell says that little has been done in England to implement the NICE recommendations on FH, despite them being published in August 2008.
This, he says, is in stark contrast to developments in Wales, Scotland and Northern Ireland, where significant progress has been made.
FH severely raises levels of LDL cholesterol which in turn can lead to heart disease and stroke. Roughly half of men with FH, if untreated, will develop heart disease by the age of 55, and roughly one third of women by the age of 60.
Crucially, half of their first degree relatives will be similarly affected but are often unaware of the condition.
The guidelines from NICE recommends early treatment with statins and lifestyle changes that can help to lower the risk of heart disease and improve life expectancy, as well as generating considerable savings for the NHS in the long-term.
But a survey of 70 per cent of primary care trusts (PCTs) in England, carried out by the charity Heart UK, found that many PCTs admitted to a lack of formal planning for FH and incomplete knowledge about relevant FH services.
Overall, 60 per cent of the surveyed PCTs said that they do not have written plans to support implementation of the NICE guidance on FH, and only 5 per cent provided evidence of written plans to support implementation.
Just over a quarter of PCTs indicated that there are no specialist lipid clinics in their area and that they did not know where lipid clinics were that FH patients may be referred to.
The survey showed a definite lack of lipid clinics or specialist centres available to children or young people with FH. Altogether, 41.5 per cent of PCTs answered that there are no appropriate services in their area, and a further 26 per cent did not know whether there were any appropriate services.
Dr Morrell, who is also the Chairman of Heart UK's FH Guideline Implementation Team, described the responses of English PCTs as “very disappointing” and suggested a lack of knowledge concerning FH.
“Of course, NICE guidelines are not compulsory, but we do recognise them as best clinical practice. As a result of this study, my colleagues at HEART UK and I have legitimate concerns that, if such guidance is not being implemented, patients cannot enjoy access to the best clinical diagnosis and care.
“Over the long term, increased diagnosis and management of people with FH will reduce long-term morbidity and early mortality from heart disease. While the health service faces cost pressures, the reduction in morbidity (and long-term disablement) has important implications for cost-savings to the health service over time.”
“Without a proper programme of cascade screening we cannot capture the generations of people within each family affected by FH. If the attitudes of English healthcare commissioners do not change, we risk the scandal whereby the genetic misfortune of about 100,000 people with undiagnosed FH will be further compounded by where they happen to live.”
NICE has produced a range of support tools to help PCTs implement the FH guidelines, including audit support, a costing template, a costing statement and an educational slide set.
12 April 2011