“Every patient is a life that is impacted by the diagnosis. Being there for them, both as a professional and as a human being, is so important”

Cristina cycles to work every morning. Some days her job consists mainly in speaking to families and patients who have worries or concerns arising from a recent epilepsy diagnosis. She's one of the 23 Nurse Case Managers at the SJD Barcelona Children's Hospital. These nurses play an advanced, practical role: offering support; answering the most common questions from patients and their families; managing visits; and providing personalised, targeted care. This specialised nursing role is available in 16 services and units at the Hospital, including Pediatric Neurology, Cristina's specialism; Endocrinology; Haematology; Surgery; Pulmonology; Rheumatology; and Immunology, among others. 

We interviewed Cristina to ask about her career and how she views her role as a Nurse Case Manager.

When you first started nursing, did you ever expect to end up in case management?

Not at all. I graduated in 2001 and started working on Ward 8 of the hospital, where patients with various profiles were admitted. That's where I had my first interactions with neurology patients. From then on, I cared for all kinds of patients. From Endocrinology and Nephrology, to children and teenagers from Psychiatry.  In 2005, in line with the opening of the Epilepsy Unit, some of us did a course at the Niño Jesus Hospital Madrid, and shortly after, I got a place on the Neurology nursing team. There, I worked in both that service and in the Sleep Disorders Unit, as well as at VEEG inpatients.  

The complexity and chronicity of these patients’ conditions made it necessary to have a professional caregiver who took a more holistic approach to care; a nurse with a more advanced role, which in these circumstances was a case manager. I put myself forward for the role in 2019, and myself and a colleague have stayed in the Neurology department since then.  

What do you need to be a case manager?

Experience, skills and an interest in looking after families. For me, I leaned towards neurology from the start, both for the scientific side of it as well as for the human side. With regard to the first part, I meet with families in person after an epilepsy diagnosis. This part is important because it’s a sensitive time, full of concerns and questions. Each patient, each family, is a life that is impacted by the diagnosis. Being there for them, both as a professional and as a human being, is so important: to ensure the best outcome possible in each case.  

At the initial appointments, I really emphasise training and try to give them tools to deal with seizures, decompensations, missed medication doses, travelling, etcetera. I’m also there for them emotionally, to ease the impact of the news for the whole family. From there, standard procedure is to activate the child or teenager's profile on the Patient Portal. A month later, I have a follow-up call with them to check on their progress and figure out next steps for each case.  

What is your relationship like with your epilepsy patients?

For teenagers, I’m their person of contact, but for younger children not so much. Usually the families are the ones who take the lead answering questions. From my side, I try to make sure that, from around eight or nine, kids are there at their appointments, taking charge of their medication, monitoring their own rest and developing good habits and decision-making skills. They should be involved in the process so that, in future, the transition to adult hospital is easier. 

It's common that, once teenagers get a bit more independent, they schedule appointments with me on their own because they're comfortable enough to talk to me about their concerns, possible toxic habits, sexuality, studies, etcetera. The best part of my job is, without a doubt, connecting with patients and their families. I wouldn't change it for anything. 

What are the common care elements that case managers provide across specialisms?

Firstly we’re there through it all; from diagnosis to transition. Each specialism requires its own type of knowledge and has its own unique factors, but the ones present across the board include a highly specialised profile, providing specialised care, early detection to prevent complications, and referral when necessary. In our role as listeners, we can decide whether a patient needs more tests or a clinical reassessment, for example. We can also keep an eye out for cases where the patient or a family member might need some kind of mental or social support, or to be put in touch with the Child Life team, for instance. We also often act as the bridge between the Hospital and family associations, which are hugely helpful in areas outside of the hospital environment. 

How has the way the Epilepsy Unit handles cases changed in recent years?

Advancements in technology have contributed hugely to improving quality of life for families, and techniques have evolved in such a small timeframe. This scientific progress has been complemented by the creation of a nursing figure who both acts as an accessible point of contact and who alleviates anxiety in the people we care for, as well as reducing the number of unnecessary emergencies or visits. As such, it is faster and easier to deal with patient concerns and adherence to treatment is improved. Our work has a positive impact on the lives of families and it also helps save Hospital resources. Case managers have an overall picture of the patient and their progress as a human being, which is essential for the development of the children and teenagers we care for.