Friday 30th September 2016
Mac Voice, the magazine for Macmillan professionals: Autumn 2016
The National Macmillan Thyroid Cancer CNS and Thyroid Cancer Information Nurse explain their unique and innovative roles
In 2009 Dr Laura Moss, an oncology consultant in Cardiff, ran a survey looking at access to clinical nurse specialists (CNSs) for people with thyroid cancer. The survey revealed that the vast majority of thyroid cancer patients either had no access to a CNS or they had access to a CNS of a different speciality. As thyroid cancer is so different from other cancers in terms of its treatment, long-term care and prognosis, having a CNS of another speciality can be difficult and is not ideal for either the patient or the nurse.
Dr Moss devised the concept of a national ‘virtual CNS’ who is ‘shared’ between different centres. This is the first arm within the thyroid cancer project, which has been funded and expanded by Macmillan. I have held my position as the National Macmillan Thyroid Cancer CNS within the NHS since January 2014. Macmillan added a second post to this. My colleague Geri works within Macmillan as the Thyroid Cancer Information Specialist. The project is funded until the end of 2016 and the work will continue beyond.
In my NHS role, I support patients locally in South East Wales as their CNS. I also run a phone review clinic for longterm, low-risk patients with papillary and follicular thyroid cancer.
The national element of my role has different aspects. I support patients in three pilot centres in England and Scotland by phone and emails. Initially, I visited each centre in order to meet the different teams and find out more about local facilities, and how treatment is carried out in particular centres. Patients are referred to me from these centres either by surgeons, oncologists, local CNSs or via the various multidisciplinary teams I join by video link. Referrals have also come from patient support groups. As I cannot access patient records in other centres, good communication with local teams is critical. This includes not just consultants, but also secretaries, nuclear physicists and other CNSs.
The role has been very enjoyable, but had its own (sometimes unexpected) challenges – like understanding a patient with a whispery post-surgery voice and a strong local accent! For some patients, it has been difficult to understand what I can offer them. Not meeting me in person might make it more difficult for patients to remember that I am here to help. Supporting people with only a limited knowledge of information such as their disease details and blood results, and no face-to-face contact, requires a specific set of skills, maybe much like those used by professionals on the Macmillan Support Line. Other aspects of my role which have been carried out in cooperation with Geri include:
- Developing an e-learning module for the Macmillan Learn Zone.
- Writing a textbook chapter.
- Offering training and teaching opportunities across the UK.
- Working towards a standardised and UK-wide agreed recommendation for the low iodine diet pre-radioactive iodine ablation.
- Enhancing network, support and information-sharing among UK CNSs who work with thyroid cancer patients.
This job is fascinating and has given me opportunities such as reviewing Macmillan information booklets and working with pharmacy representatives and thyroid consultants on holding a training day. In the future there may be an extension to patient support in other centres, depending on interest and capacity.
National Macmillan Thyroid Cancer CNS
I joined Ingrid on the project in September 2014 as the Thyroid Cancer Information Nurse on the Macmillan Support Line. I speak with people living with cancer, relatives, friends and other healthcare professionals, providing information about diagnosis, prognosis, treatments and side effects. I offer telephone and email support on adjusting to life with and after cancer, and a listening ear if people just want to talk through how they’re feeling.
People affected by thyroid cancer come to me from various sources. The service I provide is advertised on the Macmillan website and in the Macmillan literature, with an open invitation for people to call me about any aspect of thyroid cancer. People are also signposted to me from CNSs across the UK as well as other organisations that support people with thyroid cancer.
A large chunk of my calls and emails come from people who are newly diagnosed. Even if a CNS is involved in their care, they may not have met that person yet. Most people want to talk through their situation and ask about what to expect from treatment, what to ask their doctor, how to take time off work or how to tell their children. The latter question is a common one, because so many of these patients are young women with young families.
I follow up many of my calls with emails summarising our discussion, with links to appropriate information and signposting. Some people get all the information and support they need from that first contact but others need ongoing support.
We’ve worked closely with users of the Macmillan Online Community. It was clear from this group that they sought information from a number of channels and not just through the telephone. With the group’s permission, I joined the forum, and now respond to questions posted online and provide links to information. If a member of the forum appears to require more in-depth support, I offer an open invitation to call me on the support line or communicate privately via email. Ingrid’s observation about the skill set required for this role is very true. I am often asked, ‘How do you support patients if you don’t have access to their notes?’ The information and support I provide is based on my assessment of callers' knowledge and my understanding of their situation and their main concerns. So some interactions are more specific than others.
I work closely with Ingrid and her consultant and am able to utilise their clinical expertise. I have also had a number of clinic visits shadowing my local thyroid cancer clinicians here in Glasgow. This has helped to consolidate my learning and ensure I give accurate and up-to-date information.
One of the project aims was to address and eliminate inequality in access to thyroid cancer information and thyroid cancer-specific CNS support, regardless of postcode. Our joint-working is unquestionably going some way to achieving this.
Thyroid Cancer Information Nurse