More people in the West Midlands will be screened for a deadly inherited heart condition, thanks to new funding awarded by the Miles Frost Fund and the British Heart Foundation (BHF).
Debrah Ntini has joined University Hospitals Birmingham NHS Trust as a clinical nurse specialist, thanks to funding from the Miles Frost Fund and British Heart Foundation (BHF).
The charitable fund has granted £70,000 to the University Hospitals Birmingham NHS Foundation Trust (UHB) to support and expand genetic testing for a life-threatening heart condition called hypertrophic cardiomyopathy (HCM).
We estimate that around 6,000 people in the West Midlands metropolitan county have this condition, which can cause a cardiac arrest without warning. However, the majority of people are undiagnosed, as HCM often has no symptoms.
Receiving the support they need
Valerie Marlow (pictured centre, back row) with her sister Pamela, father John and brother Robert.
Valerie Marlow, 68, from Sutton Coldfield was diagnosed with HCM four years ago.
She said: “I was out running, something that I had done regularly for many years, when I suddenly felt like I couldn’t breathe. It was like a switch had gone off and the next second, I had collapsed in the middle of the road.
“I was taken to hospital by ambulance and managed to regain consciousness. I was waiting to go home, but the cardiologist told me I wasn’t going anywhere soon, as an ECG test had detected an abnormal heart rhythm.
“Around that time, my brother Robert had tested positive for HCM. I received further tests and it was confirmed that I had also inherited this condition.”
Valerie has since been fitted with an ICD, a small device that has been surgically implanted into her chest which detects and corrects life-threatening heart rhythms.
Immediate family members of those who test positive to having the faulty gene should also be offered an assessment at a specialist inherited heart conditions centre. Since Valerie’s diagnosis, several relatives have been tested through the genetic testing service at UHB. Her sister, Pamela and father, John, have both been found to carry the faulty gene.
Valerie, a grandmother, added: “The diagnosis has been life changing and initially, it was difficult to understand what this would mean for my family. However, four years on I am able to live my life normally – I have even completed an eight and a half mile run in aid of the Miles Frost Fund.
“It’s great to hear that this service will now be extended, as this means more families like mine will receive the support they need.”
National cascade testing service
The Miles Frost Fund was set up in memory of Miles Frost, the eldest son of the late Sir David Frost, who died from HCM - a condition he had inherited from his father.
The Miles Frost Fund is a charitable fund set up in memory of Miles Frost, the eldest son of the late Sir David Frost. Miles died in July 2015 from HCM, a condition he had inherited from his father.
In response to his death the Frost family and the BHF set up the fund with the aim to raise £1.5 million to set up a national cascade testing service for family members of those who have died of, or have been diagnosed with, HCM.
UHB is the first trust in the Midlands to benefit from the charitable fund. The money will fund a clinical nurse specialist for the next two years.
The trust has now appointed Debrah Ntini to this role. Debrah, who has 15 years' experience in nursing, is based at the Centre of Rare Diseases at the Queen Elizabeth Hospital in Birmingham and will deliver the service across the region.
The role will also complement the existing HCM service at UHB, which is run by consultant cardiologist Dr William Bradlow.
Dr Bradlow said: “I am thrilled that the money made available by The Miles Frost Fund will allow UHB to enhance the HCM service we already provide to patients across the West Midlands.
“The impact this funding will have on detecting HCM is hugely positive and will allow us to deliver improved access to genetic testing for UHB patients affected by HCM and their family members.”
Preventing a needless loss of life
Paul Stern, the BHF’s Health Service Engagement Lead for the Midlands, added: “The majority of people with HCM are undiagnosed and will have no symptoms. BHF researchers were among the first to find the faulty genes underlying the deadly heart condition which caused the tragic death of Miles Frost.
“Thanks to this pioneering discovery, genetic testing for HCM and other inherited heart conditions is now available in the UK. Our aim is to ensure people who have HCM are identified and treated to prevent a needless loss of life.”
FIND OUT MORE ABOUT THE MILES FROST FUND