Supporting the

Neuroendocrine Cancer Community

National Cancer CNS Day 2022

Mar 15, 2022

National Cancer CNS Day 2022.

The roles undertaken by Clinical Nurse Specialists (CNSs) are many and varied, they treat and manage the health concerns of patients and work to promote health and wellbeing in the patients they care for. We spoke to some of the Neuroendocrine Cancer CNSs to find out about why they choose to specialise in Neuroendocrine Cancer.

Sophie Noble, Leicester Royal Infirmary

Why did you decide to specialise in Neuroendocrine Cancer?

I was fortunate enough to be given the opportunity to help build up and support a specialised service solely for neuroendocrine patients, who have unique needs and whose disease is often misunderstood.

Why do you feel it is important for patients to have access to expert cancer Nurses?

Neuroendocrine tumours are frequently misdiagnosed and mismanaged, For some, symptoms will have impact on their daily activities despite having stable disease. Within this group of patients, access to a neuroendocrine cancer nurse for support, information and guidance is vital.

Barbara King, Basingstoke and North Hampshire Hospital

Why do you feel it is important for patients to have access to expert cancer Nurses?

Being given the diagnosis of cancer is a traumatic experience for anyone. However, if you have had to wait 5 to 7 years for a confirmed diagnosis your journey is inevitably complex. There are a multitude of reasons why cancer patients, especially the Neuroendocrine patients I deal with, need access to a Specialist Nurse. For many NET patients their journey is long, and to have a stable and consistent point of contact is vital. As a Specialist Nurse I am able to explain tests, procedures, treatments or perhaps the need for a change in diet, to a patient in a way they can understand. I am also able to point them to other supporting services they may require following assessment of the needs of both the patient and their family, or significant others.

To have a friendly voice at the end of the phone is vital. Patients need to be able to ask questions and not feel they are bothering someone or that the question is silly. It means the patient can have results given to them in a timely manner by a professional they know. In developing a professional relationship with the NET patients, the Specialist Nurse can come to an understanding of what the patient desires for their quality of life. We can act as an advocate for our patients. I have a patient who was getting married and was well in himself at that time. At every MDT when a change in his treatment was suggested I would reiterate that he was getting married in a few weeks and could all changes be made after that time. The patient did have a lovely wedding day and then proceeded to have a procedure three weeks later. I feel it is a privilege to be involved in someone’s life as a Specialist Nurse. As much as we help the patients in their cancer journey, I feel they teach me something about myself.

Olivia Beattie, Beatson West Of Scotland Cancer Centre

Why did you choose to specialise in neuroendocrine cancer and what challenges do you see for HCPs over the coming?

I have a drive to support my patients and colleagues who have little to no knowledge of this rare and unique cancer. My role allows me to be there for my patients from diagnosis and throughout their cancer journey and therefore build a lasting relationship based on trust. There is ongoing research into this rare cancer and this provides me with many learning opportunities which allow me to reach my full potential.

One of the challenges to be faced by HCPs in the future is service quality. This is fuelled by many factors such as the emergence of new infectious diseases such as Covid which has resulted in reduced provision of services, staff shortages and lack of study leave. It is however important for us as healthcare professionals to take responsibility for our own learning even if it is within our own time. Understanding and flexibility in work places from employers can improve the work-life balance and job satisfaction for employees. This would increase staff retention and therefore lead to an overall improvement in service quality.

Christina Nuttall, The Christie NHS Foundation Trust, Manchester

Why did you choose to specialise in Neuroendocrine Cancer and what challenges do you see for HCP’s over the coming years?

Many years ago I applied for a Nurse Clinician post specialising in upper gastrointestinal and hepatobiliary cancers. A small part of the role was looking after NET patients. As the NET service has expanded over time, so has my involvement with this interesting and challenging disease group. I am committed to provide the best service to my patients who have unmet needs.

For healthcare professionals, the challenges are recovering from the effects of COVID and getting back on track with patient care pathways and working towards improving treatments that will improve patient survival and quality of life.

Cath Powell, University Hospital of Wales

Why did you decide to specialise in Neuroendocrine Cancer?
I was a colorectal specialist nurse for over 20 years and I thought I could bring that experience to NET patients and the new South Wales NET Service, I saw it as a new and exciting challenge.
What do you think is the biggest challenge facing HCP’s over the next 12 months?
Recovering from the impact of Covid-19 to ensure patients get a swift diagnosis and treatment.
Louise Davies, University Hospitals Coventry & Warwickshire NHS Trust

Why did you decide to specialise in Neuroendocrine Cancer?

I started working at the Queen Elizabeth hospital Birmingham as NET CNS as a complete novice, I spent 3 years at the QEH and then moved University Hospitals Coventry and Warwickshire NHS Trust as much nearer to home. I knew within the first few months I wanted to specialise in NETS.

This is a very complex type of cancer and a lot of specialities are involved in the care of these patients. I found it uplifting if a patient was given better news than they were expecting, but equally sad if this wasn’t the case. 

As patients stay with the service and are not discharged, a relationship between myself and the patient developments. 

I follow patients throughout their journey, support them and am there whether it is good news or bad news to offer support. It is a wonderful role and I have meant some wonderful colleagues in this field along the way. 

 Why do you feel it is important for patients to have access to expert cancer Nurses?

NET Cancers as mentioned are very complex and it is important for patients to have a point of contact that has an awareness of NET cancers and understand what their issues/concerns are.

Also it is quite scary for patients when first diagnosed to navigate the process of initial investigations. Further down the line, it is important for patients to know that they have someone to help them navigate their ongoing care.