Caroline Spelman MP is supporting an All Party Parliamentary Group (APPG) on Heart Disease campaign which focuses on inherited conditions that put people at risk of developing coronary heart disease or sudden death. This week, the APPG, chaired by Stuart Andrew MP, held an event for Parliamentarians to meet with nurses and patients from their regions and find out about inherited conditions in their constituency.
In Meriden there are an estimated 430 people living with familial hypercholesterolaemia (FH), a potentially fatal and common inherited condition which, if undiagnosed, can cause people to die from a heart attack at an early age.
Recent evidence suggests that as many as one in every 250 people in the UK could have FH and each child of someone with the condition has a 50 per cent chance of inheriting it.
Early statin treatment, lifestyle advice and careful monitoring for people with FH can bring someone’s life expectancy back to that of someone without the condition. However, the majority of people in the UK are undiagnosed and are not being treated for the condition.
Thirty years of BHF research discovered one of the faulty genes responsible for the majority of FH cases, prompting NICE to recommend genetic cascade testing, a simple blood test, for immediate family members (parents, siblings or children) of those affected. Pilot cascade testing projects funded by the BHF have shown that genetic cascade testing services are highly cost effective and have identified over 2,000 people with the condition to date. But testing is still not available across the UK.
Caroline Spelman MP, said: “More than 430 people in my constituency are living with this potentially fatal inherited condition and worryingly, most of these people will be undiagnosed. We must do all we can to raise awareness of how a simple test can save the life of a patient with FH.
“Genetic cascade testing is a highly effective and efficient way of diagnosing people with FH and ensuring they receive the right treatment. Improving diagnosis rates for FH would not only save lives, it could also save the NHS millions of pounds each year.”
Simon Gillespie, Chief Executive of the British Heart Foundation, said: “The reality is that there could be hundreds of thousands of people across the UK who are unaware that they could be at risk of having an early heart attack.
“Our research has meant that we are now able to diagnose people with FH and prevent them from a potentially sudden and unexpected death at a young age. To continue this, we need to ensure that everyone at risk has access to these tests and effective follow-up support and treatment."
Huon Gray, National Clinical Director for Heart Disease for NHS England, said: “Familial Hypercholesterolaemia (FH) is an inherited condition and can have devastating consequences if left untreated, but the good news is that people with FH who are diagnosed and treated before they develop heart disease generally live as long as people who don't have FH. Genetic testing for FH enables an early diagnosis and better outcomes for patients and families."
For information and advice about FH and other inherited heart conditions, visit https://www.bhf.org.uk/fh