Inherited cardiac conditions (ICC) nurse specialist team

Lead nurse

Bethan Cowley

ICC clinical nurse specialists (adult)

  • Telephone: 020 7351 8823 or 020 7352 8121 ext 85118 (Harefield)

ICC clinical nurse specialists (paediatric)

  • Telephone: 020 7352 8121 ext 82205

Clinical nurse specialist (aortopathy)

  • Telephone: 020 7352 8121 ext 82913

Nurse consultant - paediatric electrophysiology and ICC

Catherine Renwick 

It is the role of the clinical nurse specialist (CNS) team to take care of people and their families who suffer, are at risk, or are suspected of having an inherited cardiac condition (ICC). These conditions include: cardiomyopathy, inherited arrhythmia, and aortopathy.

The team comprises of both adult and paediatric trained nurse specialists, who provide seamless support, advice and education from childhood through to adulthood.

The CNS team is involved in over 10 consultant-led cardiomyopathy, inherited arrythmia and aortopathy clinics a week, with care extended to inpatients undergoing diagnostic evaluation or therapies and outpatient support.  The CNS team also act as an expert resource to GPs, cardiologists, other nurse specialists and other healthcare professionals.

The ICC Clinical Nurse Specialist Team also have a number of nurse-led initiatives, including:

  • Four nurse-delivered virtual clinics a week.
  • A nurse-led ICC transition service, including a dedicated transition clinic once a month.
  • ICC patient days.
  • ‘Coffee-mornings’ for children and parents.
  • Hosting an annual ‘ICC nursing and allied health professional study day’ since 2013.

In addition to helping patients and their families through the investigative and diagnostic screening process, the team also help with the management and relief of symptoms, help to gauge risk of sudden cardiac death (SCD) and provide much needed advice and education on lifestyle adjustment, including offering further support to parents, schools, employers and other community-based organisations. 

A large proportion of our work also involves genetic counselling and supporting our dedicated genetic counsellors. This scientific-based form of counselling provides psychological support throughout patients lifelong care. It also helps to demonstrate and explain risk through recognition of family inheritance patterns and genetic information, it can also trigger clinical screening for other family members that are identified as being ‘at-risk’.

A key part of the CNS role within the service is ensuring the multidisciplinary team works efficiently and with a family-centred focus.

We also engage in research and patient experience initiatives to learn better and improve our ICC services, and education. We teach both nurses, doctors and other allied health professionals, internal and external to our organisation, in order educate other health care professionals with respect to ICC.