The charity is concerned that despite NICE recommending the roll-out of these family screening programmes (cascade testing) in August 2008, nothing has been done.
Familial hypercholesterolemia (FH) is an inherited form of high cholesterol that can be fatal. Close family members of a diagnosed patient will have a 50 per cent chance of inheriting the condition themselves, so screening is seen as crucial.
The charity is using retained political agency Hanover to persuade NHS commissioners to implement this programme.
Hanover will develop a toolkit for the commissioners that demonstrates how cascade testing can be introduced in their area. The kit will include information on clinical assessment, DNA diagnosis and cascade testing in families, sample letters and consent forms to send to families and clinical management, as well as audit support tools.
The agency will also organise a pilot meeting in the North West of England in October to promote the screening programme and toolkit to commissioners and clinicians.
The initial project will run until December, but the charity is currently trying to secure funding to make it a national campaign next year. Echo Communications will also run a media campaign for the charity.