Hypertrophic cardiomyopathy (HCM), a condition that is within the family of ICCs, is a disease that puts patients potentially at risk for a range of adverse outcomes, as well as the development of debilitating symptoms that could gradually erode daily life. Too often, awareness occurs late, and gaps in care across the patient journey leave families vulnerable, with variations in delivery of care across the UK due to the absence of standardised care pathways. Reducing inequities and delays is critical not only to prevent adverse outcomes, but also to minimise the wider societal and economic burden of untreated or late-diagnosed disease.

The release of the British Heart Foundation’s 10 Year Health Plan for England earlier this year reflects a strong national commitment to improving cardiovascular care and reducing related deaths by 25% by 2035. At BMS, we share this vision: early prevention and intervention are critical to improving outcomes for people with ICCs. Access to high-quality care, alongside appropriate employment and wellbeing support, can make a vital difference.

To accelerate timely diagnosis and improve the management of ICCs, we partnered with the British Society of Echocardiography, the British Inherited Cardiovascular Conditions Society (BICCS), and Cardiomyopathy UK. Together, we have mapped out ways to overcome barriers and developed tangible recommendations for how collaboration can drive lasting improvements in patient care.

Bristol Myers Squibb’s More than Inherited Cardiac Conditions: Driving Policy Reform in ICCs report shed light on the unmet patient needs from identification of symptoms, to achieving a diagnosis and ongoing management of ICCs. The report also exposed key systemic barriers, including extensive waits for clinical services, inequitable access, and the resulting impact on patient outcomes.

Key recommendations identified in the report to improve care, included:

• Creating a system that works for patients and clinicians
• Ensuring patients have access to timely and effective diagnostic care
• Education for healthcare professionals
• Improving access to genetic testing for high-risk patients

The recommendations highlighted an opportunity to work together to improve outcomes for patients and clinicians across ICCs. Central to this is to drive towards greater equality across the UK in the testing and ongoing management of these conditions.

Cardiomyopathy UK’s most recent report showcased the real-world consequences of these systematic barriers. For instance, following the pandemic, 42% of patients were diagnosed in A&E, rather than through GPs or genetic testing, underscoring the urgent need to strengthen diagnostic pathways. These insights point to the same conclusion – a coordinated, partnership-led approach is essential to improving care and building a more equitable, higher quality range of services across the UK.

Access to ICC services across the UK remains inconsistent, driven by geographical variation and the absence of standardised care pathways. Currently, care is concentrated in just 36 specialised ICC centres, severely restricting the number of patients who can be tested and treated. This highlights the urgent need for the UK to expand and standardise provision so that patients, regardless of where they live, can access timely and equitable care.

The British Society of Echocardiography (BSE) highlights: “Echocardiography is pivotal to the diagnosis of these conditions, and developing advanced roles and physiologist-led services will support retention of our most experienced echocardiographers and increase capacity in ICC clinics. With continued partnership, support, and resourcing at a national level, these services can be expanded more effectively, ensuring workforce sustainability and helping the NHS deliver on its wider objectives for timely diagnosis and earlier access to care”

BICCS reinforces: “This report is a vital initiative to address geographical variation in service provision and access to specialist care. BICCS is committed to leading the transition towards a more equitable, higher-quality range of services across the UK. With the right strategic investment and ongoing alignment of national priorities, we can better support patients everywhere to have more consistent access to specialist expertise.”

The ICC report also highlights that partnership must extend beyond clinical care. ICCs affect far more than physical health, they can place a significant burden and impact on employment, financial security, and mental wellbeing. Without coordinated support, the wider societal costs, from economic inactivity to rising welfare spend, can be significant. A recent Cardiomyopathy UK survey revealed that more than half of respondents struggled to cope emotionally in the six months following diagnosis, underlining the urgent need for earlier, more coordinated, and holistic support for patients and their families.

Cardiomyopathy UK underscores the importance of collaboration, noting that: “HCM is a hidden challenge within our healthcare system – it is frequently underdiagnosed and inconsistently managed, despite its serious clinical and economic consequences. From the patient charity perspective, we urge policymakers to prioritise early detection, equitable access to specialist care, and integrated treatment pathways. Strategic investment in HCM services will not only improve patient outcomes, but also reduce avoidable costs across the NHS. Now is the time to act – by embedding HCM into national cardiovascular strategies and ensuring every patient has access to timely, coordinated care.”