Our national survey

Living with cardiomyopathy – a state of the nation report

Following on from our previous state of the nation report, our new 2025 report provides an updated stocktake of cardiomyopathy care in the UK. 

Based on the findings of our 2024 MyInsight survey, it reveals significant gaps across the care pathway - people affected by cardiomyopathy continue to face delays in diagnosis, fragmented care, and limited access to personalised support and treatment. 

This report sets out Cardiomyopathy UK’s vision for improving outcomes for people living with the condition in the UK and their loved ones, and outlines the policy recommendations needed to make change happen. Building on our existing work, we will continue to collaborate with policymakers, clinicians and the wider system to turn these recommendations into reality.
 

Read the full report 

Here are some of our key findings:

• 50% of respondents diagnosed with cardiomyopathy in the last two years said they had not received enough support to come to terms with their diagnosis
• 28% of respondents were not offered genetic testing for themselves; 38% were not offered it for family members
• 76% of respondents do not have a care or treatment plan
• 62% said their condition affected their ability to exercise; 32% lacked access to physiotherapy
• 49% reported a negative impact on mental health, but only 10% had this discussed by their cardiology team
• 81% had not been offered the chance to participate in cardiomyopathy-related medical research

Recommendations for change

Cardiomyopathy UK’s MyInsight survey reveals a clear and urgent need for systemic change in how cardiomyopathy is diagnosed, treated, and supported across the UK. Our findings highlight three core priorities for transformation. For each, we have identified a series of recommendations including:

Early diagnosis and equitable access to genetic testing

• Train and incentivise GPs to recognise the symptoms of cardiomyopathy and record family cardiac history
• Introduce Best Practice Tariffs for timely genetic assessment and inherited cardiac conditions (ICC) referrals, supported by broader investment in ICC capacity
• Support earlier diagnosis of cardiomyopathy by improving access to diagnostic services
• Undertake a stratified targeted screening programme for cardiomyopathy, focused on individuals with known family history or other risk factors

Holistic, person-centred care that supports mental, physical, and social wellbeing

• Ensure equal access to specialist cardiac care via integrated care plans
• Facilitate more routine access to mental health support
• Incorporate cardiomyopathy into commissioning guidance for cardiac rehabilitation

Enhanced access to treatment and continuity of care across the system

• Expedite the Single Patient Record for seamless care coordination
• Prepare the NHS for new therapies through workforce and tech investment
• Invest in clinical researchers and research to that enables earlier diagnosis, targeted treatments and improved quality of life for those in the UK affected by cardiomyopathy

This survey on which the report is based was part-funded by Bristol Myers Squibb and Cytokinetics. These companies had no input on the content or methodology and will not have access to data gathered.

Talk to us 

If you have been affected by any of the issues raised in this report, speak to one of our expert Cardiomyopathy UK specialist nurses.