Evaluation of the British Heart Foundation (BHF) Cardiac Genetics Nurses Service Development Initiative

In 2008 the British Heart Foundation launched an initiative to enhance the care and services delivered to patients and their families with or at risk of an inherited cardiovascular condition (ICC), through funding nine BHF Cardiac Genetics Nurse (CGN) posts across England (n=8) and Wales (n=1) for a period of three years.

Working with colleagues at the Welsh Institute for Health and Social Care, the Health Economics & Policy Research Unit, and the All Wales Medical Genetics Service the GPU has undertaken an independent evaluation of this initiative.

The evaluation has adopted a case study approach with. Principal data sources have come through interviews with health professionals and patient representatives, quarterly reports, and through completion of an outcomes framework of service development indicators developed by the evaluation team (the BHF CGN Maturity Matrix). The evaluation posed three core questions:

1. What does an effective and sustainable cardiac genetics service look like?
2. What is the most effective way for the nursing role to integrate cardiac and genetics services?
3. To what extent are the defined features being achieved over time?

Recently completed, the final report will be available shortly. An executive summary is available on the National Institute for Health and Care Excellence website.

We conclude that the CGN model is fit for purpose and that the CGNs can make an effective, value for money contribution to ICC services, facilitating efficient service delivery across the specialties of cardiology and clinical genetics. Our conclusions on the CGN contribution can be summarised in five distinct and complementary themes:

1. The CGN plays a core role in facilitating seamless care between specialties in a patient focused integrated ICC care pathway
As highly skilled cardiac nurses, with further training in genetics, CGNs act as a bridge, facilitating care and services between cardiology and genetics. Their broad skill set promotes flexibility, enabling them to adapt to change as services develop as well as allowing them to contribute directly to clinical care. Their role makes a direct contribution to enhancement of quality, capacity for innovation, increased productivity and prevention.

2. The CGN role enhances the quality of the patient/family experience
CGNs enhance the quality of the patient/family experience through the holistic, family-centred care they deliver. They act as a point of contact, providing continuity along a potentially complex pathway, often when patients and families are particularly vulnerable. CGNs spend time helping patients and those at risk of an ICC to understand their condition, its management and the patient pathway. They take time to listen and respond to concerns and queries, support decision-making, and empower patients through education and advocacy.

3. The CGN adds capacity to innovate and enhance or develop aspects of (new) services
CGNs act as catalysts to further development, helping to develop new services, care pathways and new ways of working, building links across the MDT and wider networks. CGNs take the initiative in improving aspects of services through activities such as establishing patient support groups and forums, and providing opportunities for staff development.

4. CGNs enhance productivity, providing a value for money contribution to ICC services
CGNs enhance productivity through increasing the effectiveness of the ICC service and the identified productivity gains represent a clear improvement in efficiency. They enable increased throughput together with a reduction in the number of inappropriate patients seen, with a resulting increase in patients’ capacity to benefit, especially for those at highest risk. Effectiveness is further increased through the release of consultant and Genetic Counsellor time from activities not requiring their expertise and by ensuring that families are better prepared to communicate with these health professionals. The value of released resources partly offsets the cost of employing the CGNs.

5. The CGN plays an important role in prevention
CGNs play an active role in prevention, identifying unmet need through their activities in raising awareness, family history and clinical assessment, triaging and cascade referrals. They increase capacity to see higher risk patients sooner and their patient-centred approach helps promote compliance. Their role in education further promotes prevention by extending knowledge into primary and secondary care and the wider community.