I volunteered to work at a national level when the programme was set up so I could speak up on behalf of those whose journey through the diagnosis and care pathway wasn’t as good as mine. I am a member of the patient panel for the British Society for Heart Failure. I raise awareness of cardiomyopathy and promote Cardiomyopathy UK’s work as a member of various subcommittees.
I’ve met some amazing people working to deliver better outcomes for people living with cardiomyopathy. It’s great to be involved with an organisation that really values the patient voice and to see how policy work can improve lives.
I would like GPs to have a better understanding of cardiomyopathy. Living with the condition has an impact on the health and wellbeing of both the patient and their family so I’d also like to see more mental health support.
It would be good to see people living with cardiomyopathy getting more involved to help improve the health care system. If you’re thinking about becoming a Change Maker, you’ve probably already recognised the need for a patient voice. From my experience you will have a voice and it will be heard.