A new partnership between NHS England and the British Heart Foundation could prevent hundreds of heart attacks and strokes across the West Midlands when a new region-wide service to screen people for high levels of cholesterol is launched.
Familial hypercholesterolaemia (FH) is an inherited condition that is passed down through families. It is characterised by high cholesterol levels and is the main inherited cause of early heart and circulatory disease if left untreated.
NHS England (West Midlands) and the British Heart Foundation have joined forces to work with all 22 Clinical Commissioning Groups to launch the country’s first region-wide cascade screening service which will see all relatives of people diagnosed with FH tested for the condition.
Today Dr Kiran Patel, Medical Director at NHS England (West Midlands) and who has spearheaded the development of the service, said: “By introducing this screening test as routine we could potentially prevent hundreds of deaths from cardiovascular disease across the West Midlands.”
Dr Patel, who is also a consultant cardiologist at Heart of England NHS Foundation Trust, said: “Currently we treat a lot of people as if they have FH based on an assumption and we could potentially eliminate them from needing more care as well thanks to this service and there are others who we don’t treat because we haven’t diagnosed them yet.”
It now means that if someone living in the West Midlands has an usually high cholesterol level their DNA can be tested for FH genes. If one is found, then their immediate family can be contacted to see if they want to be tested. Likewise, those who are unfortunate enough to have had premature cardiovascular disease can be screened for FH where it is appropriate to do so.
FH, once diagnosed is a manageable condition. Cholesterol lowering drugs can be prescribed and people are advised to lead a healthy lifestyle to keep cholesterol as low as possible.
David Collings, a civil servant living in Mold in Flintshire has first-hand experience of living with FH. He said: “On Boxing Day 2010, I could feel my chest getting tighter and tighter as I was walking my dogs through the forest and I was feeling exhausted and breathless. After a few days of struggling, I went to my doctor who said he thought I had had a heart attack. I was absolutely shocked, particularly as I had never smoked and had been walking and cycling for years. After I was diagnosed with FH, I was referred to the FH support group in Wrexham where I was living at the time. Not only did I have the gene, but six people in my immediate family were quickly identified, including my daughter Bethan who was 12 at the time.
“FH is a ticking bomb and I feel so much better knowing that my daughter has been identified and can be monitored and treated. If my local clinic hadn’t found the gene, the first sign of my daughter being affected could have been a heart attack in twenty years’ time. Finding out that she carries the gene as well might well have saved her life.”
The British Heart Foundation has provided almost £400,000 to fund five nurses who will provide testing across the region.
Simon Gillespie, Chief Executive at the British Heart Foundation, said: “FH is often called a hidden killer, but the truth is it doesn’t have to be hidden and it doesn’t have to be fatal; treatment to prevent heart attacks is straightforward once the condition has been identified. More than 2,000 people have been diagnosed with the faulty gene through BHF funded cascade testing and are now receiving the right treatment to achieve normal life expectancy. It’s more than each individual who benefits from the diagnosis, it’s the whole family.
“BHF has funded research into FH for more than 30 years and our ultimate goal is consistent access to genetic testing across the UK. Today’s launch is a huge step towards achieving that goal for the whole West Midlands region.”
The service is be launched at the Innovation Birmingham Campus on 8 March and will be attended by Huon Gray, NHS England Clinical Director for Cardiovascular Disease Prevention.