Andy has been a Cardiomyopathy UK Change Maker since the programme was set up in 2020. We caught up with Andy and asked him some questions about his journey as a Change Maker.
How long have you been a Change Maker?
I’ve been involved since the programme was first set up in 2020. I read about Change Makers through MyLife magazine and responded to the call for volunteers.
Why did you volunteer to be a Change Maker?
I have been living with cardiomyopathy since 2012. Looking back, and hearing about the experiences of others, I realised I was very fortunate to have had a smooth route through the diagnostic and care pathway.
I volunteered so that I could speak up on behalf of those who don’t have such a good journey. I want to improve care for people to reduce the fear they may feel when they’re diagnosed and to help remove the restrictions we all face as a result of our diagnosis.
What activities have you been involved with as a Change Maker?
As part of the first group of Change Makers, I participated in the initial training programme. As well learning how the NHS worked, we were asked to indicate the amount of time we could commit and the sort of work we’d like to do. I opted to work at a national policy level.
For the past three years I have been a member of the patient panel for the British Society for Heart Failure alongside another Change Maker. I can raise awareness of cardiomyopathy and promote Cardiomyopathy UK’s work as a member of various subcommittees. We have had the opportunity to sit on panels at the annual meeting and recently I attended the launch of a new British Society of Heart Failure policy initiative (25in25) as a patient representative.
Through the British Society for Heart Failure and Cardiomyopathy UK I have also been involved with the patient arm of the Global Heart Hub. Last September I had the privilege of attending a training course in Rome to help organisations develop a patient engagement strategy.
What aspects of the role have you found most rewarding?
I’ve met some amazing people who are 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. It’s also been good to meet with other Change Makers and to see how policy work can improve the lives of people living with cardiomyopathy.
What are you looking forward to working on as a Change Maker?
I’m excited to see how the Change Makers can help to deliver Cardiomyopathy UK’s new five year strategy. I would like to see people living with cardiomyopathy get more involved with making changes and getting measurable results to improve the health care system.
What would you change in the NHS to improve services for people with cardiomyopathy?
I would push hard for GPs to have more training and gain a better understanding of cardiomyopathy. I would also like to see more mental health support. Living with the condition has an impact on the mental health and wellbeing of both the patient and their family.
What would you say to anyone thinking of being a Change Maker?
I’d say if you’re thinking about it, you’ve probably already recognised the need for a patient voice. You may be wondering if you can have an impact. From my experience of being a Change Maker you will have a voice and it will be heard.