17th January, 2023
Callum Ferrier was a tall, happy young man. He played shinty and had just taken up rugby. With hopes of becoming a motor mechanic, he had his whole life ahead of him. In 2013, 16-year-old Callum went to bed with a sore head. He was found the next day by his father, having died in the night. His tragic and untimely death devastated his mother, his father and his three brothers.
Callum had cardiomyopathy—a condition affecting the shape of his heart. The Ferrier family, from Doune and Deanston in my constituency, have gone on to fundraise more than £30,000 for Cardiomyopathy UK, which is a national charity for those with the disease. Through ceilidhs, treks all over the world, sky-dives and concerts, Callum’s family are honouring his legacy and raising awareness. The charity is working to extend its offering in Scotland, but it needs volunteers to develop peer groups and provide advocacy.
Cardiomyopathy is a group of conditions, and various forms affect the heart in different ways. Dilated cardiomyopathy leads the walls of the heart to become stretched and thin, while hypertrophic cardiomyopathy leads to the enlargement of muscle cells in the heart, thickening the heart walls. With arrhythmogenic cardiomyopathy, cells in the heart muscle do not stick together properly, so the heart wall can become weak. Those conditions have a range of causes, but in many cases, they are genetic. They can all reduce the heart’s ability to pump blood around the body and can lead to heart failure.
At least one in 250 people in the United Kingdom have cardiomyopathy, but for many it remains undiagnosed. The story of Callum, who was young, active and a keen rugby player, is sadly not unique. According to the British Heart Foundation,
At least 12 people under 35 in the UK die from an undiagnosed heart condition
every week. Members will probably think, as I do, that that is quite a high number and that we need to be concerned about it.
With diagnosis and treatment, those tragic deaths can be prevented. However, Dr Steven Cox, the chief executive of Cardiac Risk in the Young, says that there are no signs or symptoms in 80 per cent of cases of cardiomyopathy because, for many, the first indication of the condition is death. Awareness and access to screening programmes are therefore vital.
Just weeks before Callum’s death, Phil O’Donnell, the captain of Motherwell Football Club, died on the pitch. Mr O’Donnell also had cardiomyopathy. Such high-profile deaths led to a rise in screening programmes, which at first were for young athletes but are now available for many young people through charities such as CRY. Their activities are funded mainly through the efforts of those who have lost relatives. CRY screens around 27,000 young people every year for free. Free screenings are, however, booked up quickly, and with well over a million people in Scotland aged 14 to 35, a more sustainable and far-reaching screening strategy is required.
Although cardiomyopathy is frequently undetected, it is possible to diagnose it. Doctors use scans and tests such as electrocardiograms, echocardiograms and magnetic resonance imaging, and once the condition is diagnosed, it can be managed through lifestyle, medication or surgery. Diagnosis for family members is also available on the national health service due to the genetic nature of the condition.
Symptoms can go unnoticed or remain mild, or they can get worse over time. They include breathlessness, chest pain and feeling faint or light-headed; the abdomen, legs or feet may become swollen; and the rhythm of the heart may be abnormal. However, Cardiomyopathy UK found that
73% of patients with symptoms did not associate their symptoms with a heart problem at the time of diagnosis.
The charity also highlights that those with symptoms spend a long time in primary care before diagnosis, which suggests that we need greater awareness among healthcare professionals.
I tried searching for the common symptoms online. When typing in “swollen legs” on NHS Inform, I found that heart failure comes up only on page 3, and the site mentions cardiomyopathy only in passing; the condition is not mentioned under “chest pains” or “breathlessness” either. There is plenty of information on cardiomyopathy out there, but only for those who know to look for it.
A page on NHS Inform to highlight the condition to parents and young people who may be googling symptoms would go some way towards bridging the gap. The Scottish Government’s “Heart Disease Action Plan 2021” sets out heart disease as a priority. However, cardiomyopathy is mentioned only in passing. A more robust outline of the plan relating to the condition would be welcomed by many. I look forward to hearing how the Government will ensure that raising awareness of cardiomyopathy and providing pathways for screening is built into the strategy. Morag, Callum’s mum, said: “If as family we do nothing else, we are raising awareness of this silent killer.”
The family say that they hope that their work prevents other families from going through the heartache that they still feel with Callum’s untimely death.
I am grateful, as I know that the Ferrier family are, for the interest and engagement in this debate, and I look forward to a future in which cardiomyopathy is diagnosed and treated for as many young people as possible.
