Nursing for patients with immunodeficiency was brought into the spotlight in late 2015, with immunology nurse specialist Emily Carne winning the Clinical Nurse Specialist Award from the Royal College of Nursing in Wales, United Kingdom. The national event followed an exhaustive process of nomination, shortlisting, interviews, further shortlisting and eventually the announcement of victory, accompanied by a glass plaque, flowers and a modest cash prize. After winning the award, Emily stated she was “pleased to have raised the profile of Immunology nursing at a national event.”
The administration of ‘mysterious infusions’ witnessed during a stint in an infectious diseases unit piqued Emily’s curiosity as a newly-qualified nurse. This curiosity developed into an ongoing interest in primary immunodeficiency disease, and eventually to formal positions in immunology. Now Lead Clinical Nurse Specialist at the Immunodeficiency Centre for Wales, Emily is motivated by “my team as they are so supportive; involvement with clinical trials; the fast pace of research; new developments and treatments – there is always something new to learn. But most of all I love the patient interaction; the fact that you really get to know the people under your care”, however she also finds that “allowing individual choice and providing excellent care with a diminishing budget and decreasing staff to patient ratio is a big challenge.”
From her perspective at the forefront of patient engagement, Emily identifies a number of challenges for nursing in immunodeficiency, including:
- How can primary immunodeficiency patients be given access to the same level of supplementary services as patients with conditions such as cystic fibrosis and those undergoing bone marrow transplants (e.g. psychology, physiotherapy, dietetics, social work support)?
- How can new technology be used to aid treatment or increase choice?
- Should we be limited to primary immunodeficiency or should secondary immunodeficiency be managed by the same clinical team? And are there additional care needs for patient with secondary immunodeficiency?
To help meet these challenges, Emily recognises the relevance of international collaboration, and sees INGID as having two critical roles: looking inwards to its members, and looking outwards to address broader, more systemic challenges. Emily explains, “looking inwards involves sharing information, demonstrating best practice, supporting one another and providing education for inexperienced and experienced nurses who are seeking to learn. Looking outwards is using the knowledge and experience of those nurses to highlight the particular challenges of rare disease management on a global level to ensure continued funding and frameworks to provide the very best evidence-based care for our patients.”