Medical opinion
Celebrating the work of the CNS
To mark 40 years of Lymphoma Action, Publications Manager Anne Hook spoke with Jane Gibson and Heidi Moertl, both from The Christie Hospital, Manchester. They talked about the role of the Clinical Nurse Specialist (CNS) in the care and treatment of people with lymphoma.
Back in 2005, Lymphoma Action received a generous donation, which they used to fund six Clinical Nurse Specialist roles throughout the country. It was on the basis that Lymphoma Action would fund the position for two years, so long as the hospital or trust agreed to continue the role after that time.
Jane Gibson was one of the first of these Lymphoma Action Clinical Nurse Specialists and has since gone on to become a Lymphoma Advanced Practitioner. As Jane comments: ‘Around this time the role of the CNS was not firmly established, specifically in lymphoma care, and Lymphoma Action were way ahead of their time. The role of the CNS has made a significant difference to people affected lymphoma.’
Joined by her Lymphoma CNS colleague Heidi, we asked them to explain the role of the CNS and its impact on the treatment, care and support for people with lymphoma, their relatives and carers.
What skills and training is a CNS likely to have?
CNS’s are likely to be a senior nurse with a wealth of professional experience in the setting they are working in. They operate with expert knowledge, provide evidence-based care, teach others and lead improvements in healthcare.
In addition, advanced communication and organisational skills are really important, and CNS’s often have experience of people management, coordination and care.
A CNS needs to be highly motivated to keep up with changes in treatments. There has been a shift from generic chemotherapy to more targeted therapies and they will need to be up-to-date with how treatments are delivered, potential side effects and how these are managed.
There is usually a lot of scope for learning, development and training within the role to enable CNS’s to give the best care for the patient and support the clinical team. More widely, they might train to be a nurse prescriber or carry out bone marrow biopsy procedures, as the CNS team do here at The Christie.
What is the role of the Clinical Nurse Specialist (CNS)?
A diagnosis and management of lymphoma can be complex and confusing for people to navigate. The CNS is there throughout the patient’s lymphoma journey, typically as the first point of contact from diagnosis, during treatment, in follow up and at the end of a person’s life. They are there to offer information, advice, emotional support and signposting to other services.
“The role of the CNS will vary between hospitals and centres, but their skills are used to best fit the patient need and to makes things as smooth and seamless as possible for the patient.
A key part of the CNS role is to advocate for patients. They will represent the patients’ needs within the wider team at the multidisciplinary team (MDT) meeting; indeed an MDT should not go ahead without the CNS being in the room. In addition, they are a link between other services, such as fertility preservation for both men and women, district nurses or the clinical trials team.
Does the CNS support family members and carers?
A key part of the role of the CNS is to be alongside not only the patient, but also their relatives and carers. Emotional support is a really important part of the support a CNS offers, and they have a high level of training to be able to do this, whether in person or by telephone. We talk to people to find out what their information and support needs are, and offer recommendations, make referrals or signpost them to other services. We also recognise that information and support needs can change over time, for example there can be different needs and priorities for patients at diagnosis compared with after treatment, and CNS’s are available to assess these changing needs.
What does it mean to people to have a CNS?
From feedback, we know people value having someone there at the end of the phone or email to offer advice if someone is worried at home. People tell us that they like having a familiar face when they come to clinic, especially when they are going through a difficult time.
“It’s really important for patients to have someone like a CNS in their corner, navigating and supporting them and their families, to make people’s experience of lymphoma a little bit easier and more tolerable.
For how long do CNS’s typically offer follow-up?
At The Christie, for patients treated with curable lymphomas, such as Hodgkin lymphoma and the aggressive lymphomas, we follow up patients every few months in clinic for five years. We find that we are contacted quite often with worries and concerns in the early weeks and months after treatment, but this usually reduces with time. After five years patients and their GP are provided with a summary of their treatment in a ‘long term management plan’ that includes lifestyle advice and information about any possible late effects of treatment. At that point we switch to an open follow up approach where people contact us with concerns, rather than any further routine appointments.
For patients with indolent (slow growing) lymphomas, we typically follow-up indefinitely, although for some patients who have not had treatment for many years, we consider switching to an open follow-up. We encourage people to be proactive and contact us to address concerns regardless of their type of lymphoma.
What is changing in the role?
With changes in treatments, such as bispecific antibody treatments that have different side effects, such as effects on the immune or neurological systems, although the risks are low, we are monitoring side effects closely. Once established on these treatments, they can be given at home and we anticipate there will be a move towards a more community-based approach to some lymphoma treatments in the future. This would mean patients would not have to travel to hospitals as often.
“CNS’s are involved in co-ordinating care and working with other hospitals and community services to ensure patients’ care is seamless and as positive an experience as possible.
What about late effects after lymphoma treatment?
At The Christie we have our lymphoma ADAPT long-term follow up service led by Professor John Radford and Tracy Howe, our ADAPT CNS. Patients successfully treated for curable lymphomas are at risk of late effects of their treatment and it is important that patients are aware of this and the part they and their GP can play to monitor for and reduce the risk of some of these effects. Patients have an ADAPT consultation with Tracy typically five years after their treatment.
Possible late effects of treatment are discussed early on with patients, including during the consent process. However, we often find most people’s priority is to get on with treatment after receiving their diagnosis. After treatment,people’s focus is typically on any ongoing side effects they may still be experiencing, such as fatigue or neuropathy, along with practical aspects of their lives such as returning to work or finances. Late effects of treatment is not something patients typically focus on at this early follow-up point.
A discussion around lifestyle and monitoring for late effects is the focus of the ADAPT clinic consultation with the CNS who has expert knowledge in this area. We know people want to just get on with their lives after lymphomatreatment, but also know that these are important conversations to be had so that people are aware of potential late effects, what to look out for in the future and to ensure they take up screening and other tests when invited. CNS’s use their knowledge, skills and experience to try and strike the right balance between ensuring patients are informed and empowered but not overwhelmed by the information provided.
What are your thoughts on Lymphoma Action and the support they give people living with lymphoma?
For over 30 years, we have been promoting Lymphoma Action to patients, particularly at their first clinic visit, as we find their information reliable and patient friendly. When people ask ‘where do I find out more?’ or ‘how can I connect with others with lymphoma?’ Lymphoma Action is always our ‘go-to’ resource. People need different information and services at different times along their lymphoma journey, and Lymphoma Action are excellent at all stages. Whether it is to connect with others through a Buddy or a support meeting, or to find out more information through the publications or the helpline, Lymphoma Action has always ticked all the boxes.
Heidi, what does it mean to you to be a CNS?
Being a CNS is such an important and rewarding role. For me, it is being in the unique and privileged position of making a difference to patients and families who are dealing with lymphoma. To be able to make their journey easier in any little way really motivates me.
Jane, what does it mean to you to be an Advanced Pracitioner?
Having had a senior nurse role at The Christie since 2005 with the Lymphoma Action nurse programme, I have been privileged to obtain a Master’s degree in Advanced Practice. This means my role involves having similar skills to my lymphoma consultant colleagues, including reviewing patientsi n the lymphoma clinics, performing examinations, prescribing treatment and diagnosing problems. I recently completed a Professional Doctorate Research study, where I explored treatment decision making for older patients diagnosed with lymphoma and I am grateful to Lymphoma Action in helping me to recruit patients to my study.
For me, going to work to make a difference to patients, being beside them at the darkest of times and the happiest of times remains my main motivation. Working alongside experienced and motivated colleagues in our lymphoma team, I want to ensure patients have the best experience possible.
What is the difference between a CNS and an Advanced Practitioner?
A CNS has a vast number of skills, experience and knowledge, but they sometimes need to refer to medical colleagues for a final decision to make a diagnosis of a medical problem or management recommendation. A Lymphoma Advanced Practitioner (AP) - sometimes referred to as Advanced Clinical Practitioner (ACP) or Advanced Nurse Practitioner (ANP) – the same role, just different job titles – is an autonomous role, working closely with all members of the lymphoma multi-disciplinary team (MDT).
They can diagnose, not only lymphoma but other conditions. In addition, they can make treatment recommendations, prescribe chemotherapy and other medications, assess and manage treatment side effects, break bad news or share good news to patients and their families. AP’s also have management, leadership, education, service development and research elements to their role. My Advanced Practitioner role offers a holistic approach to care, being medically competent whilst still using my nursing skills and experience within this role.
