The Cardiomyopathy Association campaigns for improved services for families affected by cardiomyopathy. Some improvements have been achieved in recent years following the publication of the National Service Framework Chapter 8 on Arrhythmia & Sudden Death. However, there is still much work to do.
We believe many more lives could be save by:
More awareness among GPs that young people can have an inherited heart condition. So when GPs see anyone, including young people, who reports any of the following symptoms – breathlessness, palpitations, dizzy spells, fainting – they make the appropriate referral for the person to be seen by a cardiologist.
Improved knowledge of cardiomyopathy among cardiologists and GPs to ensure earlier diagnosis and correct treatment to improve quality of life and longevity.
More people diagnosed with cardiomyopathy should be seen at specialist centres so they can get the very best long term care. All patients and families known to be affected by cardiomyopathy should be offered regular screening with an ECG and echo. Clear guidelines are in place and evidence suggests that family screening reduces costs and is clinically effective.
Gene testing should be more widely available as this can show people who are really at risk so they can be followed up appropriately, and even yearly when necessary.
Better emergency care, including more CPR training and excellent care when patients arrive at hospital
These actions would help save the lives of people of all ages.
You can help us by writing to your MP or assembly representative highlighting the need for improved specialist services to treat those affected by cardiomyopathy.
You can also get involved in your local cardiac network through patient, carer and public involvement (PPI). This provides the essential patient voice from those who have first-hand experience of cardiac services.
Use the links below to find out more information and contact us if you wish to discuss ways in which you can help us to fight heart muscle disease cardiomyopathy.