Louise Norgrove, from Carmarthen has recently been appointed to the new role which will support the existing Inherited Cardiac Conditions service and ensure that more people receive the screening and treatment they need to prevent sudden death.
A cardiac nurse for 16 years, Louise will be based at Morriston Hospital in Swansea and deliver the service across the region.
The funding for the post has been provided by the Miles Frost Fund and the British Heart Foundation (BHF). Morriston hospital is the first in Wales to receive the funding from which will pay to improve genetic screening services to test for a genetic heart condition called hypertrophic cardiomyopathy (HCM).
Miles Frost, the eldest son of broadcaster Sir David Frost, died suddenly aged just 31 while he was out running in July 2015, from an undiagnosed heart condition called hypertrophic cardiomyopathy (HCM), which is believed he inherited from his father.
Although Sir David didn’t die of HCM, his post mortem found the disease was present. Unfortunately, Miles and his brothers, Wilf and George, were not tested for HCM at the time.
In response to his death the Frost family and British Heart Foundation (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.
The BHF estimates that up to 130,000 people across the UK could be living with the life-threatening heart condition, which often has no symptoms but can cause a cardiac arrest without warning.
Immediate family members of those who test positive to having the gene have a 50 per cent chance of inheriting the gene themselves.
Around 30,000 people in Wales have a faulty gene that can cause an inherited heart-related condition. This service in ABMU and Hywel Dda will ensure access to genetic testing for immediate family members of those diagnosed with HCM.
Roy Bergiers 68, from Carmarthen was diagnosed with HCM six years ago. He said:
“Receiving my diagnosis came as a shock to me. I’ve been fit and active all my life as a professional sportsman and a PE teacher. I was fit into my 50’s, cycling, going to the gym and I’ve always been healthy. I had been experiencing palpitations and a high heart rate so went to my GP. I had an ECG and I was diagnosed with Atrial Fibrillation which led to further tests and a diagnosis of HCM.
“My first reaction was not to think about myself. My main worry was what this meant for my adult children. I have a son and a daughter. They have both been tested and to my relief neither of them has been diagnosed with HCM. They will continue to be monitored and this support has given me great peace of mind.
“It was life changing finding out I have a genetic heart condition and initially I struggled to understand my diagnosis and what it might mean for my family. The service I’ve had from the inherited cardiac conditions clinic in Swansea has been invaluable in helping me come to terms with my HCM and giving me and my family the support we need.”
Louise Norgrove Cardio-Genetic Nurse Specialist at Morriston Hospital said:
“This is a really important service. It’s vital that immediate family members of those affected by HCM are referred for testing so we can carry out this cascade testing. It can be a frightening prospect so the care of a specialist inherited cardiac conditions nurse is vital to support them through the process.”
“My role means we can now raise more public awareness and help hundreds more families, as the consequences of failing to identify those at risk of HCM can be fatal.”
Dr Carey Edwards, Consultant Cardiologist at Morriston Hospital leads theInherited Cardiac Conditions service. He said:
“We are delighted that the BHF Miles Frost Fund has chosen to support our inherited cardiac condition service. The service we have developed at Morriston Hospital is small but growing. We expect this funding for a dedicated inherited cardiac condition specialist nurse and genetic counselling will dramatically improve access for diagnostic testing, family screening and genetic testing for the patients we look after across South West Wales.
“Developing a dedicated service will improve the speed and quality of care we are able to provide for patients with potentially dangerous conditions.”
Adam Fetcher, Head of BHF Cymru said:
“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.”
To find out more about the Miles Frost Fund or to make a donation to support the rollout of genetic testing for HCM, visit: www.milesfrostfund.com