Today, on National Cancer CNS Day, we’re celebrating the amazing people who help those who have been affected by a brain tumour. To find out more about National Cancer CNS Day, check out #NationalCancerCNSDay on Twitter.
Vicky Hurwitz is a Neuro-oncology Nurse Consultant based at King’s College Hospital in London. She also regularly spends time at Guys and St Thomas’ Hospital in London including for a weekly oncology clinic. Here, she shares an insight into her life performing an invaluable role for the patients who need her and what she thinks needs to change to ensure everyone has the benefit of CNS support.
Vicky qualified in Manchester where she worked on the infectious diseases ward before moving to London to focus on rare skin disorders, giving chemotherapies and IV therapies. She moved on to work at a chemotherapy day unit, which is where she met her first neuro-oncology patients as a key worker for them whilst they had treatment. In 2007, Vicky was offered a secondment as a neuro-oncology CNS and, despite being a little anxious, she jumped at the opportunity and hasn’t looked back since.
Vicky said: “My day can start with requesting an MRI for someone, chasing up a scan report for someone who is in clinic that week, or attending a clinic to support the patient and their loved ones and then coordinating all the actions that come from that meeting. It’s hugely varied as my role is a central component in every patient’s care covering both the surgical and oncology aspects of treatment.
“I often make referrals to other services, such as community palliative care teams. I also sign post people to support services and I frequently mention organisations such as The Brain Tumour Charity as they do great work supporting the people who we treat and their families.”
Vicky’s demanding role, and the distance she lives from London, means that she starts her day by leaving home at 5.30am to start work at 7.15am. She uses her time on the train to do any work to prepare for the day ahead, catch up on emails, and enjoy the peace and quiet at that time of day.
There are five CNSs in Vicky’s team alongside her own nurse consultant role. This includes a CNS for low-grade gliomas which was funded by The Brain Tumour Charity for over two years. Each nurse has their own specialist interest including endocrine, support groups and late effects with plans for expansion in the coming months to include genomics and a dedicated role for teenagers and young adults.
Vicky said: “Once a month, we have clinical supervision as a group. We use this opportunity to debrief on tricky conversations, sad situations and how we could have done things differently. We’re lucky to have a brilliant team who all support each other so we often have a huddle over difficult cases and we also share cases so we can split the emotional impact they may have.
“For me, it’s hugely important that my team feel looked after – not just by me but also by each other. CNSs need to know that the daily effort they make is appreciated as it’s so often above and beyond the basics of what has to be done. Recognising that and saying thank you is so important. This is key not only for staff retention but also to prevent burnout or compassion fatigue. Sometimes this could just be a little thing like leaving healthy snacks for them to help keep going.”
The team run a number of different clinics each week from pre-assessment to a meningioma follow-up clinic. The weekly nurse-led result clinic usually sees around 10 patients. Another weekly non-malignant follow-up clinic has an average of 15 patients. The length of each varies on the type of clinic and appointment it is. The nurse-led clinic allows an hour for each person but the benign clinic, which is a telephone appointment, is just 15 minutes including writing follow-up communications and booking the next scan. Flexibility is important though so the team allow more time if someone needs it. Vicky is also part of a weekly Multidisciplinary Team (MDT) meeting, where decisions are made on individual patient care, which can take up to five hours.
Although it is an obviously incredibly challenging role, Vicky says that she loves meeting amazing patients and their family members to support them through what is often the worst time of their lives. The COVID-19 pandemic also put obvious pressure on Vicky and her immediate colleagues as well as those throughout the NHS.
She said: “The impact of the pandemic and the redeployment of both us and our patients has been the biggest challenge I have had to overcome in my career to date. My fellow CNSs and I have invested so much into building the services we offer so for then to be almost completely redeployed in the first wave of the pandemic and not be able to do what we have worked so hard to achieve was really tough for us.
“The interactions we did have were then all virtual instead of how they were all previously face to face. It made us all work so differently – although some changes we know see are for the better. Historically, the role of a CNS has been seen as a ‘nice to have’ rather than a necessity. Yet the feedback we had from patients when we weren’t available because of Covid pressures shows just how much difference our role makes to them.”
The mental health of patients, as well as physical health, is of huge importance to the CNS team. They run monthly support groups as well as daily telephone clinics for anything from wellbeing advice to signposting to financial services. Vicky’s team have recently set up an enhanced recovery programme which caters for psychological and physical needs to tackle long-term anxiety and depression of those diagnosed by putting a supportive structure in place early on in their experiences. They also refer people on to external support, financial advice and complimentary therapies too when appropriate.
This includes informing people affected by a brain tumour diagnosis about BRIAN, The Brain Tumour Charity’s app. It provides people with a place to record both the practical and emotional aspects of a diagnosis from how they are feeling one day to when their next appointment is. This data can also be shared with healthcare professionals to provide a clear and accurate picture of all that is happening to them at any given time.
Vicky said: “As part of the enhanced recovery programme, I ask all of my patients to sign up to BRIAN and ideally give their healthcare professional access to it too. This means my team and I can monitor the interventions were implementing and the behavioural patterns they result in.
“The app is so great for alerting us to when someone is having a bad day or if their symptoms have got worse. I particularly like how it allows activity from a smart watch to be uploaded so we can see what impact activity has had psychologically or with fatigue levels.”
Unfortunately, despite being recommended in clinical guidance, the support of a CNS or key worker is still not available to everyone who has received a brain tumour diagnosis.
Vicky said: “Brain tumours are rare so people need access to expert information and support from people who know what this condition is like. Medication often has to be changed to ensure a good quality of life and those changes often need close and consistent management. A CNS, in partnership with other senior staff, can do that without the patient having to scramble around for answers. The cognitive, personality and behavioural changes which come with a brain tumour means that the loved ones need support and understanding too.
“But some centres are hugely understaffed so there simply aren’t enough CNSs available to be at each key point in a patient pathway. It makes a huge difference if there is no one to call after an appointment to explain to them what they just heard or to have a familiar person advocating for them or to support them with what comes after an appointment. There is no national consistency on what this specialist role requires which needs to change.
“I would also love to increase neuropsychology provision so all our patients have access to assessment and intervention. I want to make more trials accessible quicker. It would also be great if patients didn’t have to travel abroad to get treatments which may benefit them. But we absolutely do our best under imperfect circumstances.”
Vicky’s busiest day, Monday, finishes when she gets back home at around 9.30pm. She lives on the south coast with her husband, their three kids and their dog. She loves making the most of her surroundings so she often braves a spot of cold water swimming to clear her head and to feel rejuvenated or goes for a run in the South Downs.
She added: “I love the group of patients who I work with. I have met some amazing people and had to witness with difficulty how few treatment options there are when compared to other tumour sites. I was in the chemotherapy unit when temozolomide was first made available on the NHS and I saw for myself just how exciting this change was – it the first major treatment in decades. We need more breakthroughs like that.
“The effect of brain tumours is so significant that, for many, there isn’t much that can be done. But I feel that by giving the best care I can in that situation that I am making a difference to the quality of life if not the quantity. I have always wanted to just help make the best of the time that people have whatever it looks like for them. I hope that is what I am able to achieve.”
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