Our impact in 2016
Our support services
Our support services are here to help people feel more informed about cardiomyopathy and better able to cope with the condition. Over the last year we've launched our new Live Chat services and recruited a paediatric nurses to provide specialist support to parents of young people with cardiomyopathy, amongst other activities.
Our helpline nurses were able to help over 1,200 people last year. All of our calls are unlimited in duration, giving callers all the time they needed to discuss their concerns and answer their questions.
Providing clear and accurate information
If you or someone you care about has been diagnosed with cardiomyopathy, or if you're trying to learn to live with the condition, then having clear and expert information is vital. The right information can help you feel more in control and less scared, and help you come to terms with your condition.
In 2016 we produced a simple animated introduction to cardiomyopathy, with key facts about the condition and its symptoms. We are proud to announce that our video has now been viewed and shared over 40,000 times.
Raising awareness and campaigning
Talking about cardiomyopathy saves lives. We know that there will be fewer avoidable deaths if more people can recognise the symptioms and get the treatment they need.
We worked across media channels last year to try and raise the profile of the condition, and our charity, so more people know about the help that we can give them. We secured free press in a range of local and print media, and increased our social media reach by over a third.
Educating and supporting healthcare professionals
It's a shocking fact but from our national survey of patient experience we know that almost 1 in 3 people are misdiagnosed in primary care. We also know that even experienced cardiologists can struggle to appropriately treat their patients with cardiomyopathy.
That's why we held training days and worked with medical professionals around the UK, as well as holding our onw national medical conference in London. Our conference focussed on the detection of cardiomyopathy, as well as rare diseases and the role of pathology, and included practical training sessions as well as seminars. To make sure that our training was effective we surveyed the medical professionals after the day, and 98% felt better able to treat their patients after they had attended.
Supporting research and growing our understanding
The more we know about cardiomyopathy, and the impact it can have on someone's life the more we can do to help. That's why in 2016 we understook our own research into the emotional aspects of living with the condition, and presented our findings to medical experts. We brought together our clinical advisory group, and participated in the Heart Failure Research Forum to ensure the needs of people with cardiomyopathy were understood by clinical researchers.
We couldn't do it without you
None of our work would be possible without the incredible support we receive from individuals up and down the country and from our fantastic fundraising volunteers. We receive no government funding and rely on these incredible to continue in our work. With their help last year we raised £652,000.