A day in the life of a clinical nurse specialist
Today, on National CNS Cancer Day, we celebrate the amazing people who help those affected by brain tumors. To learn more about National CNS Cancer Day, check out #NationalCancerCNSDay on Twitter.
Vicky Hurwitz is a neuro-oncology nurse consultant based at King’s College Hospital, London. She also regularly spends time at Guys and St Thomas’ Hospital in London, including for a weekly oncology clinic. Here she shares insight into her life playing an invaluable role for the patients who need her and what she feels needs to change to ensure everyone has the support of ICS.
Vicky qualified in Manchester where she worked in the infectious diseases department before moving to London to focus on rare skin disorders, administering chemotherapy and intravenous therapy. She then worked in a chemotherapy day unit, where she met her first neuro-oncology patients as a key worker for them during their treatment. In 2007 Vicky was offered a secondment as a CNS in neuro-oncology and, despite a bit of anxiety, she jumped at the chance and hasn’t looked back since.
Vicky said: “My day might start by ordering an MRI for someone, fetching an exam report for someone who is at the clinic that week, or attending a clinic to support the patient and loved ones, and then coordinating all actions resulting from this meeting. It is extremely varied as my role is central to the care of each patient covering both the surgical and oncological aspects of treatment.
“I often make referrals to other services, such as community palliative care teams. I also sign people to Support Services and frequently mention organizations such as The Brain Tumor Charity as they do a great job of supporting the people we treat and their families.”
Vicky’s demanding role and distance from London means she starts her day leaving home at 5.30am to start work at 7.15am. She uses her time on the train to do any work to get ready for the day ahead, catch up on emails, and enjoy the peace and quiet at this time of day.
There are five CNSs on Vicky’s team in addition to her own role as a nurse consultant. This includes a CNS for low-grade gliomas which has been funded by The Brain Tumor Charity for over two years. Each nurse has her own specialist interest, including the endocrine system, support groups and late effects, with plans to expand in the coming months to include genomics and a dedicated role for adolescents and young adults.
Vicky said: “Once a month, we have group clinical supervision. We take this opportunity to debrief on tricky conversations, sad situations and how we could have done things differently. We are fortunate to have a brilliant team that all support each other, so we often have difficult cases and we also share cases so we can split the emotional impact they may have.
“For me, it is extremely important that my team feel supported – not only by me but also by each other. CNSs need to know that the daily effort they put in is appreciated because it often goes beyond the essentials of what needs to be done. Acknowledging that and saying thank you is so important. This is essential not only for staff retention, but also to prevent burnout or compassion fatigue. Sometimes it can be just a little thing like leaving out healthy snacks to keep them going.”
The team conducts several different clinics each week, from the pre-assessment to the meningioma follow-up clinic. The weekly nurse-led results clinic typically sees about 10 patients. Another non-malignant follow-up weekly clinic has an average of 15 patients. The duration of each varies depending on the type of clinic and appointment. The nurse-led clinic gives each person an hour, but the mild clinic, which is a telephone appointment, takes just 15 minutes, including writing follow-up communications and booking the next scan. Flexibility is important, so the team grants more time if someone needs it. Vicky is also part of a weekly Multidisciplinary Team (MDT) meeting, where decisions are made about individual patient care, which can take up to five hours.
Although it’s obviously an incredibly difficult role, Vicky says she enjoys meeting incredible patients and their family members to support them through what is often the worst time in their lives. The COVID-19 pandemic has also put obvious pressure on Vicky and her immediate colleagues as well as those across the NHS.
She says: “The impact of the pandemic and the redeployment of us and our patients has been the biggest challenge I have had to overcome in my career to date. My ICS colleagues and I have invested so much in building the services we offer, so being almost completely redeployed during the first wave of the pandemic and not being able to do what we worked so hard for has been really difficult for us.
“The interactions we had then were all virtual instead of how they were face-to-face before. It’s made us all work so differently – even though some of the changes we know we’re seeing are for the better. Historically, the role of an ICS has been viewed as a “benefit” rather than a necessity. Yet the feedback we received from patients when we were unavailable due to Covid pressures shows how much of a difference our role is making to them.”
Patient mental health, as well as physical health, is of paramount importance to the ICS team. They run monthly support groups as well as daily phone clinics for everything from wellness advice to signage to financial services. Vicky’s team recently implemented an enhanced recovery program that addresses the psychological and physical needs to address long-term anxiety and depression for those diagnosed by putting a support structure in place early in their lives. experiences. They also refer people to external support, financial advice and complementary therapies, if needed.
This includes informing those affected by a brain tumor diagnosis on BRIAN, The Brain Tumor Charity’s app. It gives people a place to record both the practical and emotional aspects of a diagnosis, from how they feel one day to their next appointment. This data can also be shared with healthcare professionals to provide a clear and accurate picture of everything happening to them at any given time.
Vicky said: “As part of the Enhanced Recovery Program, I ask all my patients to enroll in BRIAN and ideally provide access to their healthcare professional as well. This means that my team and I can monitor the interventions implemented and the behaviors they lead to.
“The app is really great at alerting us when someone is having a bad day or if their symptoms have gotten worse. I particularly like how it allows activity to be downloaded from a smartwatch so that we can see what impact the activity has had on a psychological level or on fatigue levels.”
Unfortunately, despite being recommended in clinical guidelines, support from a CNS or key worker is still not available to everyone who has been diagnosed with a brain tumour.
Vicky said: “Brain tumors are rare, so people need access to expert information and support from people who know about the disease. Medications often need to be changed to ensure a good quality of life and these changes often require close and consistent management. A CNS, in partnership with other senior managers, can do this without the patient having to scramble for answers. The cognitive, personality and behavioral changes that accompany a brain tumor mean that loved ones also need support and understanding.
“But some centers are severely understaffed, so there simply aren’t enough CSIs available to be at every key stage of a patient’s journey. It makes a huge difference if there is no one to call after a date to explain what they just heard or have someone familiar to defend or support them with what comes after a date. -you. There is no national consistency on what this specialist role requires, which must change.
“I would also like to increase the offer of neuropsychology so that all our patients have access to assessment and intervention. I want to make more essays accessible faster. It would also be great if patients didn’t have to travel overseas to get treatments that might benefit them. But we absolutely do our best under imperfect circumstances.”
Vicky’s busiest day, Monday, ends when she gets home around 9:30 p.m. She lives on the south coast with her husband, their three children and their dog. She likes to make the most of her surroundings, so she often braves a cold water swim to clear her head and feel rejuvenated or go for a run in the South Downs.
She added: “I love the group of patients I work with. I have met some amazing people and had to see with difficulty how few treatment options there are compared to other tumor sites. I was in the chemotherapy unit when temozolomide was first made available to the NHS and saw firsthand how exciting this change was – it was the first major treatment in decades. decades. We need more breakthroughs like this.
“The effect of brain tumors is so great that for many there is not much that can be done. But I feel that by providing the best possible care in this situation, I am making a difference in the quality of life, if not the quantity. I’ve always just wanted to help make the most of people’s time. I hope that is what I am able to achieve.”