Inherited cardiac conditions (ICCs), including, but not limited to, hypertrophic cardiomyopathy, dilated cardiomyopathy and arrhythmogenic cardiomyopathy, can lead to heart failure (NHS Inform, 2022).
Fewer than half of those diagnosed with heart failure are alive five years later, a survival rate worse than some cancers (NHS Inform, 2022; Taylor et al, 2019). Despite this reality, ICC nursing services are often still viewed as ‘non-urgent’ or complimentary, which undervalues their clinical impact.
In this Q&A, Bethan Cowley, lead nurse for ICCs at Royal Brompton and Harefield Hospitals, speaks with Lisa Thakur, professional relations manager for cardiology at BMS UK & Ireland, about the evolving scope of ICC nursing, its place within multidisciplinary teams and how collaboration can help address growing capacity challenges.
How would you describe the role of the ICC nurse within cardiology services, and what makes it a distinct and critical area of clinical expertise?
ICC nurses work within a highly specialised field, supporting patients with rare inherited conditions that can carry serious clinical and family-wide implications. Clinical nurse specialist roles are well established with cardiology, but ICCs bring a level of complexity and family impact that sets the work apart. Our role varies nationally, but the core purpose is the same.
ICCs are largely monogenic disorders, and in specialist clinics we can typically identify a linked pathogenic variant in around 40% of patients (Stafford et al, 2022). That single result has implications beyond the individual, triggering cascade screening, surveillance and long‑term follow‑up for multiple relatives (NHS Inform, 2022). Very quickly, one patient becomes an entire family navigating risk, uncertainty and lifelong care.
ICC nurses combine clinical, genomic, and family-centred expertise to recognise patterns and ‘red flags’ others may miss. This blend of clinical assessment, genomic expertise and continuity of chronic care makes the role of an ICC nurse unique and safety critical members of the multidisciplinary team, which is often described as the lynchpin of ICC services.
Given the lack of a standardised ICC training pathway, what clinical exposure or education do you feel is essential to develop competence and confidence in this field?
To work confidently in this space, I strongly feel the emphasis should focus on cardiology skills and experience. Nurses require genomic education that is both formal and experiential, but we should move away from the antiquated ‘cardiac genetic nurse’ role – where genetic testing is the only task. ICC nurses require further postgraduate genomic training, as undergraduate exposure remains limited (Silva et al, 2026). But you only truly grow into the ICC role through experience.
With currently no formal ICC-specific training pathway, we rely on mixed-modality learning: time in clinic and, most importantly, multidisciplinary team meetings alongside cardiologists, genetic counsellors, clinical geneticists and other experienced nurses. In practice, you only truly develop confidence through sustained clinical exposure, where nurses learn to manage uncertainty and support patients through family-mediated genetic-risk disclosure.
Nurses consistently highlight the need for a bespoke set of competencies for ICC care, which would help standardise skills nationally. There remains a clear need for a national ICC competency framework integrating cardiology, genomics and advanced clinical practice.
What are the key challenges ICC nurses encounter in delivering effective and timely care, and what support is needed to help mitigate these?
Many services are reaching, or already at, breaking point. Time pressure and rising demand remain the most significant challenges for ICC nurses. As referrals increase, delays in accessing specialist care become more common, with patients often discharged back to community cardiology services where confidence in managing ICCs can vary (Alway et al, 2024).
A persistent misconception that ICC nursing is primarily genetics-focused further restricts investment. Because ICC nursing is not consistently defined nationally, few nurses are able to specialise fully, weakening continuity of care and increasing the risk that key points in the pathway are missed. Strengthening workforce planning and genomic literacy across multidisciplinary teams is essential.
Looking ahead, what steps are needed to ensure ICC services are consistent, equitable and accessible across settings?
Access to ICC care remains inequitable, with those who often need support most, particularly underserved communities, least represented in ICC pathways. Families from lower socioeconomic backgrounds and minority ethnic communities face the greatest barriers despite higher cardiovascular risk (British Heart Foundation, 2025).
With only 36 specialist centres across the UK, geography further limits access, forcing many families to travel long distances for routine care, and creating financial, practical and emotional burdens for families – or they are not able to access specialist care at all (Alway et al, 2024).
A hub‑and‑spoke model is essential, with specialist centres supporting local teams to deliver care closer to home, including virtual settings and to widen access to genomic testing as part of national directives to mainstream.
How can ICC nursing expertise and leadership be integrated into multidisciplinary teams to strengthen care pathways, support long-term management, and foster professional development?
ICC nursing is rooted in multidisciplinary team collaboration, sitting at the intersection of cardiology and genomics to strengthen decision making, risk assessment and care coordination.
Many ICC nurses now lead and deliver clinics, making complex clinical decisions across diagnosis, management and discharge. Our influence is also increasing nationally, with ICC nurses helping shape policy and future service design.
ICC nursing offers autonomy, advanced practice pathways, and the chance to shape a rapidly evolving specialty, making it an incredibly rewarding area to work in. It is a role that offers both clinical impact and genuine professional fulfilment
If there was one key message you would want to share with the wider nursing community and healthcare leaders about ICC nursing, what would it be, and why is it vital to act now?
Genomic healthcare is no longer optional – it is fundamental to modern cardiac care, and ICC nursing sits at its clinical front line. As outlined in the NHS Long Term Plan, genetic information has become central to everyday clinical practice, informing the diagnosis of inherited conditions, family-wide risk assessment and ongoing care planning (NHS England, 2019).
Every nurse needs a baseline level of genomic confidence, and this cannot be delayed. Healthcare leaders must invest in structured ICC training pathways and expanded specialist roles.
Without urgent investment in education, workforce development and dedicated specialist roles, we risk losing this expertise, falling behind a rapidly evolving field, and leaving the most vulnerable patients without the care they need.
Date of Preparation: August 2026
Document Number: CV-GB-2600023
References
Alway T et al (2024) The development of inherited cardiac conditions services: current position and future perspectives. British Medical Bulletin; 150: 1, 11–22.
British Heart Foundation (2025) Bridging Hearts: Addressing Inequalities in Cardiovascular Health and Care. BHF.
NHS England (2019) The NHS Long Term Plan. NHS England.
NHS Inform (2022) Inherited heart conditions. nhsinform.scot (accessed 1 April 2026).
Silva MJ et al (2026) A multidisciplinary perspective on advancing genomic nursing in Portugal: roles, barriers and system-level solutions. Journal of Community Genetics; 17, 30.
Stafford F et al (2022) The role of genetic testing in diagnosis and care of inherited cardiac conditions in a specialised multidisciplinary clinic, Genome Medicine; 14, 145.
Taylor CJ et al (2019) Trends in survival after a diagnosis of heart failure in the United Kingdom 2000-2017: population based cohort study. BMJ; 367: l5840.
