My name is Pippa and I live in Silsoe, Bedfordshire. I volunteer as a Change Maker for Cardiomyopathy UK, which is the specialist national charity for people affected by cardiomyopathy.
Cardiomyopathy is one overall term used to describe a group of conditions that affect the structure of the heart and reduce its ability to pump blood around the body. Medical experts estimate at least 1 in 250 people (approximately 266,000 people in the UK) have cardiomyopathy.
Unfortunately, a lack of data is an issue. This is partly because people are often misdiagnosed with asthma or stress in the first instance, as the most common presenting symptoms of breathlessness, tiredness and palpitations can be very similar, but also because there is a lack of cardiomyopathy specific hospital outcome data. Cardiomyopathy can affect people of all ages – from babies to the elderly and is often an inherited condition.
My story began decades ago with some irregular heartbeats. For years, I lived with it being misdiagnosed as a benign stress related problem. However, in 2019 my world was turned upside down when I was diagnosed with a form of cardiomyopathy called Arrhythmogenic Right Ventricular Cardiomyopathy (also called ARVC or ACM). This incurable and progressive condition carries with it a risk of sudden death from cardiac arrest.
My diagnosis was understandably a huge shock and in the immediate aftermath of being diagnosed I had lots of questions about how best to manage this condition, and what the implications of my diagnosis would be for my family. I also struggled to process how vulnerable I suddenly felt. I felt fearful, struggled to sleep and my confidence suffered. Luckily, I found the Cardiomyopathy UK website, and was able to access a wide range of information and support resources, including a specialist nurse helpline and peer support groups, where I was able to speak to other people with my condition. I have learned that although it cannot be cured, there are increasingly effective medications and devices to treat and control the symptoms of cardiomyopathy. These reduce the risk of a cardiac arrest and sudden cardiac death. Over time, I have learned a range of positive strategies to help me manage my anxiety, as well some small positive changes to help me manage my ongoing physical symptoms and help me live well with my condition.
Cardiomyopathy UK is aware though that more needs to be done to improve the diagnosis, treatment, access to genetics and ongoing management of those with cardiomyopathy. All too often patients can wait far too long for a diagnosis and then be left unsupported after getting this life-changing diagnosis. For many, this is due to the need to wait for appropriate care and patients often having to move between several departments in different hospitals and unable to see a specialist or cardiologist years later. Others are not informed that it could be genetic in nature and fail to access genetic testing and counselling. Additionally, patients often experience a lack of emotional and wellbeing support. Consequently, they can feel ‘lost’ in the system, confused about what the following steps are in their treatment and how to access additional support, for them and their families.
To support people affected by cardiomyopathy, Cardiomyopathy UK has been working over the past 18 months or so, with a group of Change Maker volunteers from around the UK, who have all shared their experiences of being diagnosed with cardiomyopathy with the purpose of identifying where positive change is needed. This work has been shared with the wider Cardiomyopathy UK community, and leading professional experts. Together, they have developed the Cardiomyopathy Change Agenda. The agenda advocates for 16 improvements in the healthcare services for people affected by cardiomyopathy. We believe each change is achievable and will ensure everyone, wherever they live in the UK, will be able to benefit from early detection and diagnosis, access to specialist treatment, genetic and family testing, and high-quality ongoing care and support, including coordinated care plans for those living with advancing heart failure.
After recovering my confidence, I decided to use some of my spare time to help others and I became a Change Maker for Cardiomyopathy UK in September. I am delighted to have this opportunity to promote our Change Agenda and the charity’s wider support work, within Central Bedfordshire. Thank you Healthwatch for inviting me to write this article! I am living proof that the right support can positively transform your life and the lives of your loved ones.
If you, or anyone you know who is affected by cardiomyopathy, would like support from the charity, please click here to access our website and resources.