Meeting of the Parliament

Meeting date: Tuesday, January 17, 2023

Official Report 944KB pdf

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Fundraising for Cardiomyopathy UK (Ferrier Family)

The final item of business is a members’ business debate on motion S6M-06325, in the name of Evelyn Tweed, on the Ferrier family raises £30,280.90 for Cardiomyopathy UK. The debate will be concluded without any question being put.

Motion debated,

That the Parliament congratulates the Ferrier family from Doune and Deanston on their incredible efforts raising £30,280.90 for Cardiomyopathy UK, which will assist the charity in providing support advice and nursing support; understands that the Ferrier family began fundraising following the death of Callum Ferrier on 12 February 2008, and that Callum, a 6-foot-tall rugby player, aged 16, went to bed complaining of a headache and was found the next day by his dad, having died from cardiomyopathy, something the family had never heard of; further understands that, since Callum’s death, the family has focused on fundraising for Cardiomyopathy UK through arranging ceilidhs, treks of the Sahara, Machu Picchu and the Great Wall of China, coffee mornings, Tough Mudder competitions, running the Stirling and London marathons and the Great British 10k Run, kids treasure hunts, a skydive, funeral collections, online collections, a Gargunnock songster concert and supper, selling wristbands, raffles, a fashion show and dinner, barn dance and many more fundraising efforts; understands that the family has had assistance from a number of individuals and businesses to help in their fundraising including Craig Johnstone, Craig Mair of Skelpit Lug Ceilidh Band, St. Modan’s High School, Souters, Gargunnock Songsters choir, Graeme Morgan of Natural Choice, Doune, Woodlane of Doune and McLaren Rugby Club; notes that cardiomyopathy is a disease of the heart muscle, with “cardio” meaning heart, “myo” muscle and “pathy” disease, and that it is not a single condition, but a group of conditions that affect the structure of the heart and reduce its ability to pump blood around the body, and understands that it affects around 1 in 250 people in the UK.

17:27  

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.

17:35  

I am grateful for the opportunity to contribute to the debate and congratulate Evelyn Tweed on bringing it to the chamber.

I, too, convey my most sincere condolences to the Ferrier family on their deeply tragic loss of Callum. Although I acknowledge that that awful event happened almost exactly 15 years ago, I know from personal experience that no number of years can cushion that type of loss in such terrible and unexpected circumstances.

Many colleagues will know that, in the previous parliamentary session, I was pleased to be a co-convener of the cross-party group on heart disease and stroke. During that time, fellow MSPs, together with patients, health professionals, consultants and the British Heart Foundation as the secretariat, along with Stroke Association Scotland and other charities involved, achieved a great many objectives in the research and treatment of the myriad heart conditions that sadly affect so many people across Scotland and the wider United Kingdom. When I was invited to do similar for the new cross-party group on heart and circulatory diseases, I was more than delighted to take up the opportunity.

As we have already heard and as the motion explains, cardiomyopathy is a disease of the heart muscle that is manifested in many forms. In essence, it makes it harder for the organ to pump blood to the rest of the body, which can tragically lead to heart failure. Young Callum was one of many people who have suffered from the condition. There can be no real symptoms at all and individuals can feel completely well before a tragic situation occurs. Indeed, that scenario renders the effects of subsequent heart failure even more devastating.

That makes the Ferriers’ fundraising achievements even more substantial and extraordinarily. To raise in excess of £30,000 is a phenomenal achievement. The way that they have dealt with such a terrible loss, appalling grief and undoubtedly dark times, and have turned those round through time into a superhuman example of courage, determination and the wish to help others is truly exceptional.

The target of such determination and focus is Cardiomyopathy UK. It is the only UK charity dedicated to providing support and information to everyone who is affected by the condition. The charity relies entirely on donations for its work on prevention, to ensure prompt diagnosis and to provide information and treatment to save lives and improve quality of life for people who are affected by the condition. It is all about trying to ensure that the message is put across. The debate is an example of what we can all do to try to highlight the circumstances and situations.

I wholeheartedly commend what the Ferriers have done and Cardiomyopathy UK for all that it has done. I also congratulate the local businesses, clubs, organisations and schools that are mentioned in the motion on their tireless and unstinting endeavours to benefit all levels of research, treatment and wellbeing for everyone affected by the devastating and often silent condition.

We need to raise awareness and we are privileged to have the opportunity to do so. We can fight the corner for many individuals who do not have that opportunity. We need to take that on board.

Thank you for the opportunity to contribute to the debate, Presiding Officer.

17:39  

I am pleased to speak in the debate in support of my colleague Evelyn Tweed and all who have campaigned over the years to highlight cardiomyopathy and the need for defibrillators.

I note that you, Presiding Officer, have taken part in previous debates on the issue. This will be my fifth. The first was in 2001, and the subsequent debates took place in 2010, 2014 and 2021.

I put on record my condolences to Mr and Mrs Ferrier, even while I congratulate them on their fundraising efforts following their tragic circumstances.

I first became engaged with the issue of cardiomyopathy when I met Kenneth and Wilma Gunn, who were then constituents of mine in Selkirk. After their son died from hypertrophic cardiomyopathy many years ago, they established the Borders-based charity Scottish HART—which stands for Heart At Risk Testing—which is also known as the Cameron Gunn Memorial Fund. Since then, over the decades, Mr and Mrs Gunn have worked tirelessly to promote awareness of cardiomyopathy and to encourage the testing of young athletes.

Back then, they were endeavouring to raise the £0.25 million that was required to provide a mobile echocardiogram that could be used at sports clubs and schools to test young people. Cardiomyopathy is a disease that is usually more recognisable under the headlines that we unfortunately sometimes read, such as “Sudden Death on Sports Field”, “Heart Condition Kills Youth” and “Teenager in Mystery Death”.

Cameron Gunn was playing five-a-side football with workmates, practising for a charity game, when he suddenly dropped down dead. He was 19; it would have been his 20th birthday the next day. Young people are still dying in similar circumstances, so I pay tribute to other members of the Scottish Parliament who have raised awareness of cardiomyopathy and of the work of Scottish HART.

Euan Robson, the former Liberal Democrat MSP, first lodged a motion on the issue in 1999, followed by former Labour MSP Johann Lamont in 2001, myself in 2003 and former Scottish Socialist Party MSP Rosemary Byrne in 2004. The issue has huge cross-party support.

I recognise the campaigning by outside organisations that are involved in cardiomyopathy prevention—it has made progress, and all parties have responded to it. Malcolm Chisholm, who was then Minister for Health and Community Care, and subsequently Nicola Sturgeon, met Wilma and Kenny Gunn, and both gave up a lot of time to discuss the issues with them. That shows that, with determination and a heartfelt commitment to an issue that requires attention, ordinary people such as the Ferriers and the Gunns can change things in the Parliament. It also shows that politicians listen, and that there are results.

Following the Gunns’ petition to Parliament, and further meetings with and representations from Kenny and Wilma Gunn and Scottish HART, the then Cabinet Secretary for Health and Wellbeing launched a pilot screening programme, in conjunction with health professionals and the Scottish Football Association, at Hampden park. It involved screening amateur athletes aged 16 or over for life-threatening conditions. The cabinet secretary put in a further £150,000 of funding to extend the screening pilot over the coming years, and the pilot subsequently found 400 youngsters who exhibited risk factors that ranged from mild to serious. Even one life saved is excellent, so the programme was invaluable.

The Gunns also campaigned for the placement of defibrillators in public areas such as large supermarkets, airports, and train and bus stations, and over the years that has happened—there has been movement on that.

I fast-forward to 2021, when I said in the chamber:

“From 1997 onwards, Wilma Gunn and her husband Kenny have been fundraising; raising the organisation’s profile, even in Parliament; and campaigning not only for early testing of young athletes but for accessible defibrillators. Back then, not many people knew what a defibrillator was—I include myself in that. The profile was raised here, with debates and petitions in ... the Parliament, and in 2014 Wilma was deservedly awarded an MBE.

Today, we have defibrillators at many points—in trains, bus stations, airports and supermarkets, and in the Parliament and some workplaces—but Kenny and Wilma ... have not stopped campaigning, and they are keen for even more ... to be distributed. The new ones are easy to use—you cannot hurt the patient by using them. In fact, it is better to use a defibrillator”

than have the patient die in front of you for lack of action,

“as you cannot do any more harm than if you had done nothing. I have practised on defibrillators, in the Parliament and elsewhere, and if I can use them—because I am hopeless”

with anything practical—

“anyone else certainly can. Those invaluable minutes on the defibrillator will mean life or death until the medics arrive. That is especially relevant in rural areas such as my constituency, where paramedics cannot simply arrive within eight minutes.”—[Official Report, 14 December 2021; c 98-99.]

I wanted to take part in the debate to remind members of others who have, just like the Ferriers, through their own tragic circumstances, tried to move the debate forward and tried to bring to the forefront the need for defibrillators, and testing where necessary, to save so many young lives. I congratulate the Ferriers, as I remain forever congratulating Wilma and Kenny Gunn, who are still campaigning after all these years, and I say to them: keep on campaigning, as it does produce results.

I call Claire Baker, who joins us remotely.

17:44  

I thank Evelyn Tweed for bringing the debate to the chamber, and I join other members in paying tribute to Callum Ferrier, who sadly lost his life to hypertrophic cardiomyopathy in 2008. The grief experienced by a family for the loss of a loved one is significant and, for the Ferrier family, the loss of Callum must have been devastating. To experience the death of a healthy and fit young person with their life ahead of them is a tragedy, so it is testament to the Ferrier family that they have invested time, effort and resources into fundraising for Cardiomyopathy UK, and it is fitting that their dedication is recognised in a parliamentary debate.

The family’s fundraising efforts and their continuing work in raising awareness of cardiomyopathy and supporting Cardiomyopathy UK should be praised. The breadth of campaigning and fundraising, which Evelyn Tweed highlighted, is impressive, and the family’s ability to galvanise others is evident. I hope that, by having this debate today, we can contribute to increasing awareness of the conditions, the importance of testing and the treatment and support that are available.

As the motion stresses, cardiomyopathy is not a single condition; rather, it is a group of conditions that affect the structure of the heart and reduce its ability to pump blood. Some people might get cardiomyopathy as a result of another condition or risk factor that they have and, for others, it is a genetic condition that can be passed down. However, for many, the cause cannot be found. The NHS estimates that the condition affects one in 500 people, and that figure is reflected in the number of members who know a family who have experienced such tragic loss.

I know how devastating it is for a family to lose a young son or daughter in such circumstances. The sudden death of a young person in that way is a huge shock for everyone, as the condition often goes undiagnosed, and the young person can often be athletic and active in sports.

At least 1,600 people across the UK are living with cardiomyopathy. Some people may be aware of it as a result of symptoms such as feeling tired, dizzy or light-headed or experiencing breathlessness, chest pains or swelling in the legs or stomach, but others will have no symptoms at all. Most of the people in the UK who live with cardiomyopathy are undiagnosed.

Evelyn Tweed mentioned Phil O’Donnell, who died during a football match in 2007. That was the first time that many of us had heard about cardiomyopathy and how it can cause cardiac arrest without warning. Only a few weeks later, Callum Ferrier lost his life to the same condition. Although there is no cure for cardiomyopathy, there are effective treatment options, and most symptoms can be controlled through medication, devices such as pacemakers or surgery. That is why raising awareness of cardiomyopathy is so important. If people are aware of the symptoms and know of any family history of heart disease or sudden unexplained death, they can talk to their GP about their risk and, if required, take steps to manage it. With the right treatment and support, people with cardiomyopathy can lead healthy and full lives.

Increased testing for cardiomyopathy would help to allow people with risk factors to be assessed and, if they are found to have the condition, to take steps to manage it. In 2017, the British Heart Foundation launched a UK-wide genetic testing service, which allows an additional 800 people a year to be screened for hypertrophic cardiomyopathy, with test centres across the UK, including at the Queen Elizabeth university hospital in Glasgow.

The CureHeart research project, of which Cardiomyopathy UK is a part, recently won an international competition, the big beat challenge, securing a £300 million research grant. The project was recognised as the one with the most chance of delivering a revolutionary advance in cardiovascular health and disease. The CureHeart team aims to develop a treatment that targets and silences the faulty gene that is responsible for cardiomyopathies.

I will close on that positive news. Although the Ferrier family have experienced great loss, their actions and dedication to improving outcomes for future generations send a message of hope that I applaud and very much welcome.

I call Fulton MacGregor. You have around four minutes.

17:49  

I had not intended to speak until I heard Evelyn Tweed’s powerful opening speech, which reminded me of a situation in my constituency. Therefore, I might not take up the whole four minutes, but I appreciate your allowing me to speak in the debate, Presiding Officer.

As I said, Evelyn Tweed’s speech was powerful, and it was a great tribute to the Ferrier family and to Callum. It must have been very difficult to get up and speak in the way that she did, but she did the family proud. She put on record the work that the family are doing to continue to raise funds. She and Claire Baker also mentioned Phil O’Donnell, who was, of course, a Motherwell player.

Evelyn Tweed’s speech brought to mind something that I have raised before in the Parliament, in motions and in the chamber: the similar story of young Kieran McDade, who died on 26 August 2016—which was not long after the election in that year—while training with Dunbeth Football Club in Coatbridge. He was just 13 years old. Following Evelyn Tweed’s speech, I thought that I should mention him again, and pay tribute to him and his legacy.

Kieran was known as being dedicated to Dunbeth Football Club, which is a well-known team in the Coatbridge area. The team had won the youth championship, and it was training when he, very sadly, passed away. He was a massive Celtic fan, and I think that one of the players in the Celtic game against Aberdeen that followed paid tribute to him when he scored a goal—I think that that was Leigh Griffiths. The player removed his top to pay tribute to young Kieran. That would have been a poignant moment for Kieran’s family.

The incident resulted in the football club helping to found the Kieran McDade Foundation, which was launched a year later, in 2017. The foundation now runs an annual tournament, which is very well attended and involves teams from throughout central Scotland. The purpose of the foundation is to raise money for defibrillators. According to the most recent update that I have, it has given out around 115 defibrillators, but I am sure that the figure will be more, as that update did not include the most recent tournament. The defibrillators are given to grass-roots football teams, particularly in Scotland but also in England and Ireland. They are given to local organisations. One was placed at the West End bar in Airdrie—I lodged a motion on that—and it recently helped to save an individual’s life. That young person continues to leave a very big legacy.

The Dunbeth team regularly posts about Kieran and, obviously, it posts a lot about the Kieran McDade Foundation. It is keen on defibrillators being in every town and village in Scotland. There is a lot of cross-party support in the Parliament for that, and I know that we want the legacies of that young boy and Callum Ferrier to be continued so that we get to a place in which routine screening for young people—particularly those who are active—is a reality. I hope that those sorts of incidents will become things of the past, and that the legacies of those individuals will continue to do good.

Thank you for letting me speak, Presiding Officer, and I thank Evelyn Tweed again for inspiring the debate.

17:53  

I offer my condolences to the Ferriers on the devastating loss of Callum. As we have heard, Callum, sadly, died in his sleep aged 16 as a result of hypertrophic cardiomyopathy. From the accounts that I have seen, Callum was a young man who loved sports. He was a rugby player and a football fan. He supported Rangers and the local side, Doune Castle AFC. Evelyn Tweed’s debate has been an opportunity for members across the chamber to recognise his life and the on-going impact of his loss.

The debate also raises the issue of the importance of quality care and support for people with cardiomyopathy and the issue of out-of-hospital cardiac arrest. I will touch on both of them.

It is important for us to recognise that, in the 15 years since Callum’s death, his family have carried out exceptional fundraising efforts in his memory. They have raised more than £30,000 for charity, which has been achieved by carrying out a number of quite incredible challenges. To mention just a few, they have climbed Machu Picchu, trekked the Sahara and the great wall of China, gone sky-diving and run multiple marathons. The result of those efforts has gone to providing support for Cardiomyopathy UK, which is the specialist national charity for people affected by cardiomyopathy.

The charity provides support and information, campaigns for better access to quality treatment, saves lives through raising awareness and provides hope through shaping research. Third sector partners, including Cardiomyopathy UK, play an important role in driving improvement for people with cardiac conditions in Scotland. The Scottish Government is grateful for their continued work and engagement in that area.

Cardiomyopathy UK has outlined the importance of early detection and diagnosis, improving specialist treatment, access to genetic and family testing and on-going care and support. At this point, I should explain that cardiomyopathy refers to a group of conditions that affect the structure of the heart and impact its ability to pump blood around the body. There can be a number of different causes for that, but in many cases it is a genetic condition that can be passed down through families. That might also be referred to as an inherited cardiac condition.

The Network for Inherited Cardiac Conditions Scotland is a national managed clinical network that supports improvement in the detection, diagnosis, treatment and outcomes of people with inherited cardiac conditions including, but not limited to, inherited cardiomyopathies. NICCS brings together healthcare professionals, people affected by inherited cardiac conditions and relevant third sector organisations, and together they are supporting the delivery of quality patient care across our country. A number of helpful patient resources and healthcare professional guidance are available on the NICCS website for anyone who might be interested in learning more about its work. I take this opportunity to recognise and give my thanks to everyone involved in NICCS.

Before closing, I will touch on some of the wider work of the Scottish Government that is of relevance to the debate. We recognise the scale and impact of heart diseases in Scotland and continue to deliver our heart disease action plan. The priorities and actions within that align closely with much of what Cardiomyopathy UK has identified as important areas for improvement. The action plan has a focus on early detection and diagnosis, improving specialist treatment and ensuring access to on-going care and support for people who are living with a cardiac condition.

Further to that, our reflections on the loss of Callum are a difficult reminder that, each year in Scotland, more than 3,000 people experience a cardiac arrest in the community.

In my speech I focused on defibrillators, on which we have come a long way. I just wonder whether we know where they are located. For example, do we know where they are in local authority areas? Could local authorities map where there are defibrillators, so that if somebody is in an emergency they know where to get one?

I know that in some areas the defibrillators are mapped, but I will see whether we have a national mapping system in place. I do not have that information to hand, but I will certainly get back to Ms Grahame on that.

We are working in partnership with Save a Life for Scotland to deliver the out-of-hospital cardiac arrest strategy. That includes a focus on ensuring that, in instances where a cardiac arrest is witnessed, people have the skills and confidence to intervene. The overall aim is to increase CPR—cardiopulmonary resuscitation—and defibrillation rates, leading to increased survival rates.

However, it is important to highlight that, beyond that, the strategy recognises the significant impact of witnessing a cardiac arrest or sudden cardiac death. That is why the Scottish Government has recently provided funding to Chest, Heart and Stroke Scotland and the Resuscitation Research Group at the University of Edinburgh to deliver a pilot project of aftercare support for people who have had that experience.

I am grateful for the opportunity to speak to the motion. It has reminded people in the chamber of the importance of efforts to improve early detection, diagnosis and access to care for people with cardiac conditions across Scotland. It has also served as a reminder of the importance of on-going work to increase survival of out-of-hospital cardiac arrest, and of providing aftercare to support those folks who have been impacted.

I reiterate my thanks to Cardiomyopathy UK for its vital work in supporting people with those conditions across these islands, and to NICCS, which plays such an important role in ensuring that people who are affected by cardiomyopathy in Scotland have access to quality care.

To close the debate, I put on record a remembrance of Callum Ferrier, and I give my sincere congratulations to his family on all that they have achieved in his memory.

Meeting closed at 18:01.