 Ybodaeth ymlaenwch y gwisnwys meddwl ar gyfer ond modd 6-3-2-5 ar y petrach, gan Lyfydd Ffferriaol, mae sefydlu o dde quarantine i £30,280.90 o cardiomyopathy. Y fit yw ymlaenwch wedi ymlaenwch y gallai ddawn, mae yna bod wedi hynny ymlaenwch chi'n gwybod â cyunction gynrytu ychydig, o'r prysåd. Rds i'r wneud yn eich ffunctfyniad yn ddiwrnod i chi'n ddweud, ac rydw i ddim yn gwasanaeth i gyd yn ddwynd i'ch gweithio'n gweithio'n ddweud o gyrchon sy'n gweithio'n ddweud. Calum Fherry wedi wneud i gyd yn gweithi'n ddwynd i'ch gwaith dros ffyrdd hynny. Dyna, rydyn ni'n randdo i'ch fan ar gyfer Rhwygi. Fodra gyda gwybodaeth gyda gyntaf, rydyn ni'n fwrdd i ymwysig ar hyn. Ieithodau y cyfrifyn 2013, mae'r 16-yrlyg C выпenno yn gychaf i arniad dras hyn, ac rydyn ni'n fydd yn deitio i rydym yn y gwaith yn ei trei. Rydyn ni'n tragell a'r hyn i nhw'n erbyn i'r morheidiau, rydym ni'n rydyn ni'n rhyw bros i'r prif. Calum had cardiomyopathy, a condition affecting the shape of his heart. The ferrier family from Dunedinston in my constituency have gone on to fundraise over £30,000 for cardiomyopathy UK, national charity for those with this disease. Through Caleys, Trex all over the world, the sky dives and consulates, Calum's family are honouring his legacy and raising awareness. This charity is working to extend their offering in Scotland, but they need 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 sees muscle cells in the heart enlargening, thickening the heart walls. With arrhythmogenic cardiomyopathy cells in the heart muscle don't 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 UK have cardiomyopathy, but for many it remains undiagnosed. Young, active and keen rugby player Calum's story is sadly not unique, and according to the British Heart Foundation at least 12 people under 35 in the UK die from an undiagnosed heart condition every week. You will probably be like me in thinking that that is quite a high statistic, a high number and something that we need to be concerned about. With diagnosis and treatment, those tragic deaths can be prevented, but Dr Stephen Cox, chief executive of cardiac risk in the young or cry, says that there are no signs or symptoms in 80 per cent of cases of cardiomyopathy. For many, the first indication of the condition is death. Awareness and access to screening programmes are vital. Just weeks before Calum's death, Phil O'Donnell died on the pitch. The captain of Motherwell Football Club, Mr O'Donnell, also had cardiomyopathy. High-profile deaths such as this one led to a rise in screening programmes, first for young athletes, but 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, however, book up quickly, with well over a million people in Scotland aged 14 to 35. A more sustainable and far-reaching strategy for screening is required. Although frequently undetected, it is possible to diagnose cardiomyopathy. Doctors use scans and tests such as electrocardiograms, echocardiograms and MRIs. Once diagnosed, the condition can be managed through lifestyle, medication or surgery. Diagnosis for family members is also available on the NHS due to the genetic nature of the condition. Symptoms can go unnoticed or remain mild or can get worse over time. They include breathlessness, chest pain, the feeling faint or light-headed that abdomen, legs or feet may become swollen. 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 more awareness among healthcare professionals. I tried searching the common symptoms online, and when typing swollen legs in on NHS inform, heart failure only comes up on page 3. It only mentions cardiomyopathy and passing. It is not listed under chest pains, it is not mentioned under breathlessness. There is plenty of information on cardiomyopathy out there, but only for those who know to look for it. A page on NHS informed to highlight the condition to parents and young people who may be googling symptoms would go some way to bridge the gap. The Scottish Government's heart disease action plan from 2021 sets out that heart disease is a priority. However, cardiomyopathy is only mentioned in passing and a more robust outline of the plan relating to that condition would be welcomed by many. I look forward to hearing how the Government will ensure that raising awareness of cardiomyopathy, as well as providing pathways for screening, is built into that strategy. Morag Callum's mum said that if, as a family, we do nothing else, we are raising awareness of that silent killer. 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, and I know that the ferrier family are too, for the interest and engagement on this debate, and I look forward to a future where cardiomyopathy is diagnosed and treated for as many young people as possible. I am very grateful for the opportunity to contribute and congratulate Evelyn Tweed on bringing her members' business debate to the chamber this evening. I would also like to convey my most sincere condolences to the ferrier family on their deeply tragic loss of Callum. Although I acknowledge that this awful event happened almost exactly 15 years ago, I know from personal experience that no amount of years can cushion the type of loss in such terrible and unexpected circumstances. Many colleagues will know that in the last parliamentary session I was pleased to have been a co-convener of the previous cross-party group on heart disease and stroke. Collectively, during that time, fellow MSPs together with patients, health professionals, consultants and the British Heart Foundation as the secretariat, along with the stroke association and other charities involved, achieved a great deal of many objectives in the research and treatment of a myriad of heart conditions and, sadly, affect many people across Scotland and the wider UK. When I was invited to do similar for the new cross-party group on heart and disease, I was delighted to take up that opportunity. As we have already heard, the motivation and the motions that explain the cardiomyopathy are a disease of the heart muscle that is manifested in many forms. It ensures, however, that it makes it harder for the organ to pump blood to the rest of the body and that it can tragically lead to heart failure. Often, in the case of young Calum, it was one of many who have suffered from the condition. There are no real symptoms at all and individuals feel completely well before the situation occurs with tragic circumstances. Indeed, the scenario renders the effects of subsequent heart failure as a result of even more devastating. That makes the various fundraising achievements even more substantial and extraordinary. To raise excess of £30,000 is a phenomenal achievement. The way that they have dealt with such a terrible loss affecting grief and no doubtly dark times but have turned that round through time into a superhuman example of courage, determination and the wish to help others is truly exceptional. The target of such demonstration and focus to hear about what is happening with cardiomyopathy is the UK. The only UK charity dedicated to providing support and information to everyone who is affected by the condition. The charity realises externally and donations are what it relies on to ensure that it can and does have a prompt working to try and prevent a diagnosis and get information treatment to save lives and improve the quality of people affected by the condition. It is all about trying to ensure that the message is put across and a debate of this nature this evening is an example of what we can all do to try and highlight the circumstances and situations. In conclusion, I wholeheartedly commend what the ferias have done and cardiomyopathy UK for all that it has done, but I also congratulate the local businesses, the clubs, the organisations and the schools that are involved in all that is mentioned in the motion for their tireless and unsealing endeavours to benefit all levels of research, treatment and wellbeing for everyone who is affected by this devastating and often silent condition. As has been said already this evening, raising awareness is what we need to do. We are very privileged to have that opportunity to ensure that we can raise awareness and we can fight the corner for many individuals who do not have that opportunity and we take that very much on board and I thank you for the opportunity of contributing to this member's debate. Thank you, Deputy Presiding Officer. Thank you very much, Mr Stewart. I now call Christine Baillam to be followed by Claire Baker around four minutes, Ms Gray. Thank you very much, Deputy Presiding Officer. I am pleased to speak in the debate and support of my colleague and all who have campaigned over the years to highlight the issue of cardiomyopathy and the need for defibrillators. I also comment that you, Deputy Presiding Officer, are taking part in previous debates. There will be my fifth debate on the issue, the first in 2001, then 2010, 2014 and 2021. I want to record my condolences to Mr and Mrs Ferrier even while I congratulate their funding efforts following their own tragic circumstances. Similarly, I first became engaged with cardiomyopathy when I met Kenneth and Wilma Gunn, then constituents of mine in Selkirk, who established Scottish Heart, the Borders-based Charity, which is also known as the Cameron Gunn Memorial Fund, set up after their son died from hypertropic cardiomyopathy many years ago. Since then, Mr and Mrs Gunn over these decades have worked tirelessly to promote awareness of cardiomyopathy and to encourage the testing of young athletes. Back then, they were endeavouring to raise £25 million that was required to provide a mobile echocardiogram that could be used at sports clubs and schools to test young people. This is a disease that is usually more recognisable to people under the headlines that we unfortunately sometimes read, such as sudden death on sports field, heart condition kills youth or 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 and it was his 20th birthday the next day. Young people are still dying in similar circumstances. I pay tribute to other members of the Parliament who have raised awareness of cardiomyopathy and, of course, the work of Scottish Heart, which stands for heart at risk testing. Ewan Robson, former Liberal Democrat at MSP, first lodged a motion on the issue in 1999. It was followed by former Labour MSP Joanne Lamont in 2001, myself in 2003 and again former SSP MSP Rosemary Byrne in 2004. It covers huge cross-party support. I recognise the campaigning by outside organisations that are involved in cardiomyopathy prevention, and it has made progress. All parties have responded to it. Malcolm Chisholm, who was then the health minister, met Willman, Kenny Gunn and Nicola Sturgeon. Both gave up a lot of time to discuss the issues with them. That shows that, with a heartfelt commitment to an issue that requires attention, ordinary people, such as the ferriers and the guns, can, with determination, change things in Parliament. It shows that politicians do listen and there are results. Following a petition to Parliament in a further meeting with representations from Kenny and Willman Gunn in Scottish Heart, the Cabinet Secretary for Health and Well-being launched a pilot screening programme in conjunction with health professionals and the SFA at Hamden Park. It involves screening amateur athletes aged 16 or over for life-threatening conditions. The Cabinet Secretary at that time put in a further 150,000 of funding to extend the screening pilot over the coming years. It actually then found 400 youngsters who exhibited risk factors that ranged from mild to serious. Even if one life saved is excellent, so the programme was invaluable. The guns campaign for defibrillators in public areas such as large supermarkets, airports, train and bus stations, and that is what has happened over the years that has been moving. Fast forward to 2021, and I quote from my contribution then. From 1997 onwards, Willman and her husband Kenny have been fundraising, raising the organisation's profile 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, including myself in that. Their profile was raised here in debates and petitions to the Parliament. In 2014, Willman was deservedly awarded an MBE. Today, as I have said, we have defibrillators at many points, trains, stations, bus stations, airports and supermarkets, and in Parliament in some workplaces. Kenny and Willman have not stopped campaigning, and they are keen for even more to be distributed. The new ones are easy to use, and you cannot hurt the patient by using them. In fact, it is better to use a defibrillator than to hurt the patient down front of you for lack of action, as you cannot do any more harm than if you have done nothing. I have practised defibrillators in the Parliament elsewhere, and if I can use them—of course, 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. I want to take part in this debate to remind members of others, just like the ferriers through their own tragic circumstances, who have tried to move this debate forward, to try to bring defibrillators, testing where necessary, to save so many young lives to the forefront. I congratulate the ferriers as I remain forever congratulating Wilma and Kenny Gunn, who, all years later, in a sales to ferriers, keep campaigning. It does produce results. Thank you, Presiding Officer. I want to thank Evelyn Tweed for bringing this debate to the chamber and joining others in paying tribute to Calam ferrier, who sadly lost his life to high-powered trophic 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 Calam must have been devastating. To experience the death of a healthy fit young person with their life ahead of them is a tragedy. As testament to the ferrier family, they have invested time, effort and resources into fundraising for cardiomyopathy UK. It is fitting that their dedication is recognised in a parliamentary debate. Their fundraising efforts and their continuing work in raising awareness of cardiomyopathy and supporting cardiomyopathy UK should be praised. The breadth of campaigning and fundraising highlighted by Evelyn Tweed is impressive, and the ability to galvanise others is evident. I hope that by having this debate today, we are able to contribute to increasing awareness of those conditions, the importance of testing and the treatment and support that is available. As the motion for the debate stresses, cardiomyopathy is not a single condition, rather a group of conditions, which affect the structure of the heart and reduce its ability to pump blood. Some people may get cardiomyopathy as a result of another condition or a risk factor that they have, and for others it is a genetic condition that can be passed down, but for many the cause is not able to be found. The NHS estimates the condition to affect one in five hundred people, and that figure is reflected by the number of us who know a family who has experienced this tragic loss. I know how devastating it is for a family to lose a young son or daughter in these circumstances. Sudden death of a young person is a huge shock for everyone, as the condition often goes diagnosed, and the young person can often be someone who is 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, breathlessness or chest pains, swelling in their legs or stomach, but others will have no symptoms at all. Most of the people who live in the UK with cardiomyopathy are undiagnosed. When Phil O'Donnell died following his football match in 2007, as Evelyn Tweed mentioned, it was the first time that I have 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. While 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, if they know of any family history of heart disease or sudden unexplained death, they can talk to their GP about their own risk and, if required, take steps to manage it. With the right treatment of 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 found to have a condition to take steps to manage it. In 2017, the British Heart Foundation launched a UK-wide genetic testing service, which allowed an additional 800 people a year to be screened for hyper-triopic cardiomyopathy, with test centres across the UK, including at the Queen Elizabeth University Hospital in Glasgow. The Cure Heart Research Project, which cardiomyopathy UK is a part of, recently won the international competition, the Big Beat Challenge, securing a £300 million research grant. It was recognised as the project was the most chance of delivering a revolutionary advance in cardiovascular health and disease. The Cure Heart team aims to develop a treatment that targets and silences the faulty gene responsible for cardiomyopathies. I will close on that positive news. While the Ferrier family have experienced great loss, their actions and dedication to improving outcomes for future generations is a message of hope, and one that I applaud and very much welcome this afternoon. Thank you very much, Ms Breaker. I will call Fulvin McGregor again for around four minutes, Mr McGregor. Thank you, Presiding Officer. I hadn't actually intended to speak until I heard Evelyn Tweed's opening speech today and how powerful that it was and reminded me of a situation in my constituency, so I might not take up the whole four minutes, but I do appreciate you allowing me to speak in this debate. I want to just say again, as I said, that Evelyn Tweed is very powerful opening speech and I think a great tribute to the Ferrier family and to Callum, and it must have been very difficult to go up and speak in the way that she did, but I think she has done the family proud and put on record the work that they are doing to continue to fundraise, as well as Claire Baker raising a fellow Donald as well, who of course was a mother role player. What it brought to mind with me is an issue that I have raised, Presiding Officer, in this Parliament before, through motions and in the chamber, naturally relating to the very similar story of young Kieran McDade, who died in the 26th of August 2016, not long after the election of that year, while training with Dumbeth football club in Coatbridge just 13 years old. I felt that after Evelyn Tweed's speech that I should also make mention of him again and pay dedication to him and his legacy since, he, as I said, was only 13 years old and he was known as being dedicated to his team Dumbeth football club, a well-known team in the Coatbridge area. They had won the youth championship and were training at the time when they very sadly passed away. I am a massive Celtic fan and I think that one of the players in the Celtic game that followed paid tribute to when the player scored a goal against, I think it was Lee Griffiths and he scored a goal against Aberdeen and he removed his top to pay tribute to young Kieran and that would have been a very poignant moment for his family. Following that, the whole instance transpired in the football club helping to find the Kieran McDade Foundation, which launched in 2017 a year later and now runs a tournament annually, very well attended with teams from all across central Scotland. The purpose of the foundation is to raise money for defibrillators, which they have now given out. The last update that I had was about 115 but I am sure that it will be more now because that does not include the most recent tournament and they give out to grass roots football teams, particularly across Scotland but also in England and in Ireland and defibrillators to local organisations. One of such, which I also made a motion for, was that one of the said defibrillators was placed at the West End bar in Airdrie and very recently helped to save an individual's life. So a very, very big legacy this young person is continuing to leave. I know that the team regularly posts about them and obviously it posts a lot about the Kieran McDade Foundation and I am keen that the defibrillators are in every town and village across Scotland. I know that that is something that has got a lot of cross-party support in the Parliament and that it continued at this young boy just like Calum's legacy has continued and that we get to a place where routine screening for young people, particularly those who are active, becomes a reality in, you know, in hopefully these sort of things, things of the past, but that these individuals' legacies go on to do good and thanks for letting me speak, Presiding Officer, and thanks again to everyone to be there for inspiring the debate. Thank you. Thank you, Mr MacGregor. I now call Kevin Stewart to respond to the debate, Minister, for around seven minutes. Thank you, Presiding Officer, and I'd like to open my speech today by offering my condolences to the ferriers on the devastating loss of Calum. As we've already heard, sadly Calum died in his sleep age 16 as a result of hypertrophic cardiomyopathy. From the accounts I've seen, Calum was a young man who loved sports, a rugby player and a football fan. He supported Rangers and local side Dune Castle and Evelyn Tweed's debate today has been an opportunity for members from across the chamber to recognise his life and the ongoing impact of his loss. It also raises the importance of quality care and support for people with cardiomyopathy and the issue of out-of-hospital cardiac arrest, both of which I will touch on in my speech. First of all, it's important for us to recognise that in the 15 years since Calum's death his family have carried out exceptional fundraising efforts in his memory. They have raised over £30,000 for charity and this has been achieved by carrying out a number of quite incredible challenges. To mention just a few, they have climbed Machu Picchu, trekt the Sahara and the Great Wall of China, gone skydiving and ran multiple marathons. The result of those efforts has gone on to provide 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 this area. Cardiomyopathy UK have 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, Cardiomyopathy UK 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 this, but in many cases it is a genetic condition that can be passed down through families. It might also be referred to as an inherited cardiac condition. There is a network for inherited cardiac conditions in Scotland, known as NICS. This is a national managed clinical network, which supports improvements in the detection, diagnosis, treatment and outcomes of people with inherited cardiac conditions, including but not limited to inherited cardiomyopathies. NICS brings together healthcare professionals, people affected by inherited cardiac conditions and relevant third sector organisations. Together, they are supporting the delivery of quality patient care across our country. There are a number of helpful patient resources and healthcare professional guidance available on the NICS website for anyone who might be interested in learning more about their work. I would like to use this opportunity to recognise and give my thanks to everyone involved in NICS. Before closing, I will touch upon some of the wider work of the Scottish Government, which is relevant to this 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 Cardio Myopathy UK has identified as important areas for improvement. That is the action plan that has a focus on early detection and diagnosis, improving specialist treatment and ensuring access to on-going care and support for people living with a cardiac condition. Further to this, reflecting on the loss of Callum is a difficult reminder that each year in Scotland over 3,000 people experience a cardiac arrest in the community. I will certainly give way to Ms Graham. I tended to focus on defibrillators and we have come a long way. Do we know where they are located? For example, do we know local authority areas? Could they map where there are defibrillators? 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 get back to Ms Graham and see if we have a national mapping system in place. I do not have that information to hand, but I will get back to Ms Graham on. 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 and defibrillation rates, leading to increased survival. It is also 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 research resuscitation group of Edinburgh University to deliver a pilot project of aftercare support for people who have had that experience. I am very grateful for the opportunity to speak on that motion tonight. It has reminded 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 from out-of-hospital cardiac arrest and of providing aftercare to support those folks who have been impacted. I reiterate my thanks to Cardio Myopathy UK for their vital working support in people with those conditions across those islands. I also thank NICS for playing such an important role in ensuring that people who have been affected by Cardio Myopathy in Scotland have access to quality care. Finally, to close this debate, I would like to put on record the remembrance of Callum Ferrier and to give my sincere congratulations to his family for all that they have achieved in his memory. Thank you, Presiding Officer. Thank you very much minister. That concludes the debate and I close this meeting of Parliament.