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In today’s economic climate, Macmillan clinical nurse specialists (CNS) have to demonstrate how their services impact on service delivery.
As healthcare budgets tighten further, providing a sound financial argument to justify continued funding of specialist services will become mandatory. Yet much of the work undertaken by Macmillan CNSs isn’t formally recorded, reviewed or communicated. Capturing the contribution each CNS makes both qualitatively as well as quantitatively, is considered a positive and necessary activity.
This article aims to encourage CNSs to be more proactive in demonstrating the skill and value they offer patients, and the level of positive influence they have within cancer care.
This requires provision of better quality data that reveals not only daily clinical activity, but other dimensions of the role which have less direct effects on patient care. Data collection should involve not just recording numerical data, but also qualitative data to indicate the positive difference which is made to the lives of people affected by cancer.
It’s the combination of quantitative data, with qualitative data – the rich descriptions and detail of CNS activity – that reveal the real story. Work which isn’t obvious or measured can then be valued and safeguarded.
The government’s proposed changes to the NHS, outlined in Equity and excellence: Liberating the NHS, include clinicans becoming more focused on results that are meaningful to patients by measuring outcomes. For example, how successful a person’s treatment was, and their quality of life, rather than processes such as waiting list targets. Improving transparency when reporting such outcomes is a key objective for the Department of Health, which all clinical services will need to address.
Other recent cancer policies such as the National Institute of Health and Clinical Excellence clinical guidance on supportive and palliative care and the Nursing Health Mandate provide evidence and exemplars of the values and virtues of specialist cancer nursing. Despite the benefits of the CNS role being generally well-acknowledged, by patients they have, to date, been insufficiently articulated and evaluated.
There are several reasons why this may be the case. The first is the complexity of the role, with many different dimensions described within a CNS’s daily activity.[8,9] The second is its diversity, with many variants of the role across different settings, specialities and services. A third explanation is that much of what specialist nurses do happens ‘behind the scenes’ – a point which will be discussed further in this article. But perhaps a more significant reason is that collectively, CNSs haven’t prioritised the collection and reporting of data to explain role activities and justify their posts.
Distinguishing the contribution The CNS's key role is to influence patient care through the provision of clinical expertise, education and research. It’s the acquisition and application of specific knowledge, skills and expertise within the cancer speciality that enables Macmillan CNSs to practice at an advanced level. This may involve taking responsibility for particular aspects of a defined client group’s care, acting as a key worker, and managing their care pathway. The CNS contribution may be demonstrated less directly through advising, guiding and supervising others to influence processes and systems.
Ideally, the CNS’s skills should complement and enhance those of the other team members through collaboration and consultancy. Since cancer care has become increasingly complex, coordinating care with many different members of the healthcare team is customary. Mapping these contacts and recording communication with them is an essential activity. This could be done through numerically cataloguing individual conversations or through documentation of endorsed contracts of behaviour, ie all agreed individual responsibilities of the CNS within the team.
Corner et al’s large-scale evaluation of the CNS role found that the interdisciplinary nature of CNS work makes distinguishing their contribution from other professional input difficult, because patient outcomes are dependent upon a combined team response. They also noted that patients can find it difficult to describe the particular part the CNS played in their care.
Data collection and subsequent analysis should be considered a necessary process in continually proving and improving services. Its purpose is not purely to defend the existence of CNSs, but to offer deeper insights into what they do and suggest how they may need to change or alter their service.
In terms of clinical activity, all interventions associated with a patient referral need to be recorded. This is key information which must be routinely collected and stored for future analysis and role review. Most CNSs record their clinical activity by logging the number of new patients referred per month.The monthly totals suggest the level of demand for the service, but provide only a partial insight into a CNS’s workload.
They may exclude the significant proportion of a CNS’s clinical time spent caring for patients referred in the previous months whose healthcare needs continue.
The continuing involvement of the CNS may be captured by collating the number of follow-up patients seen in any month, as well as the such monthly statistics provide a basic indicator of activity, they disregard the variation in the type of CNS intervention and number of interventions per patients seen. To offer further role clarity and visibility, this variation needs to be teased out.
Each patient will have their own unique requirements for support and information. Some may only want a minimal level of involvement by the CNS, because they are managing well, do not feel they need additional care, or for other reasons do not wish to engage with the CNS service. However, other patients referred to the CNS service with the same diagnosis and undergoing the same treatments may call upon the CNS much more – and this needs to be accounted for.
Recording the level of involvement required by each patient need not be too onerous since it is a combination of the type and number of interventions. The type can be characterised as either a simple or more complex intervention requiring direct or indirect care. By capturing data describing the level of complexity of all patient interventions, the value of the specialist skills and knowledge of a CNS can be illuminated.
The routine recording of this level of clinical activity when presented alongside the number of outpatient/ward/home visits and telephone calls made to, and received from patients and their carer and carers, is considered a minimum service requirement.
Webber first articulated levels of intervention to help teams prioritise their workload, and orientate their services to people with complex needs.
The rationale is to concentrate specialist resources on people who most needed them and redirect the rest to the generic workforce. Four levels of intervention were briefly presented in Webber’s paper. These different levels are felt to be useful in articulating the CNS contribution and are described further. Two of the levels are also illustrated with patient scenarios drawn from Jackie Jones, Macmillan head and neck cancer CNS.
Level 1 – Simplest level of intervention on issues relating to patient care
This level would be applied to an intervention which provides consultancy to others when no direct contact with the patient is made. This may be a one-off discussion relating to patient care, initiated by healthcare professionals on an ad-hoc basis, but could be a more formal request for advice and/or support. The intervention is delivered either face-to-face or over the telephone.
Level 2 – Single patient contact to resolve a specific problem
This intervention would include a one-off review of a patient in the clinic who has a specific need, such as a symptom control issue or a concern about their disease progression. The intervention requires a specialist level of knowledge and skill but is easily resolved during a single consultation.
Example of Level 2 intervention
Mrs G is a 67-year-old woman who had her surgery for squamous cell carcinoma of her left ear. She had completed her treatment and was doing well. At her clinic appointment she said she was not sure about her pain relief medication – she was in some pain and on enquiring, she said she wasn’t taking them regularly. The CNS spent about 10–15 minutes with her and her husband to ask about her pain. It transpired she didn’t want to take the medication too often because she was getting constipated but she felt unable to mention this to the consultant.
The CNS explained that it was a very common problem and while her analgesics had side effects, they were also effective. The goal of the intervention was to improve her pain management and resolve the constipation. The CNS wrote down the best times and frequency for her to take her medications, explained that constipation could be prevented while on this medication, and checked that district nurses were visiting her. The consultant prescribed some laxatives for the patient to take regularly and she didn’t need to be seen again.
Level 3 – Short-term involvement for multiple problems
Level 3 is a more involved level of intervention both in the complexity of the presenting problems and the need for several interventions by the CNS. Examples include provision of support and information when a patient has just been given bad news, assessment and management of needs when associated with more complex aetiology whether physical, psychological or social. There are also patients for whom care is shared with another healthcare team involving several updates with one another such as telephone communication with the relevant palliative care team.
Level 4 – Interventions when patients require ongoing specialist advice and support for complex problems
The fourth level describes interventions of the greatest complexity, when there is requirement for long-term specialist involvement, generally for several months both during and after cancer treatment. The intervention may involve assessment and management of multiple problems, which may reflect patients with rapidly changing disease status, additional health problems, and/or challenging family dynamics.
Level 4 may also be used to reflect patient referrals which required Level 3 direct care, but then due to continuing support and advice to other health and social care agencies, CNS involvement becomes more complex and involved. For example, liaison with district nursing teams, the GP, and Marie Curie and community palliative care teams looking after the patient.
Example of Level 4 intervention
Mrs H is a 68-year-old woman diagnosed with a squamous cell carcinoma of the epiglottis. Although the cancer was relatively small, because of various ongoing medical problems she couldn’t have radical radiotherapy or chemotherapy, and surgery would almost certainly compromise her ability to swallow normally.
She suffered from anxiety, depression, claustrophobia, angina and atrial fibrillation. She was awaiting a coronary artery bypass graft. After palliative radiotherapy treatment she returned to the hospital for her follow-up appointments and it was during one of these that she complained of pain in her mouth and face.
When she was told that the last imaging showed a partial response of the cancer and no new disease, she appeared pleased at first, but afterwards she said she wasn’t happy because she thought all the cancer would have gone. Subsequent conversations with Mrs H and her family (with her consent) were necessary to explain why she received treatment with palliative intent. The CNS discussed her concern about Mrs H’s psychological status with her consultants and arranged additional support for her.
Due to the continued CNS support, Mrs H began to attend a head and neck support group with her husband. Mrs H also experienced several side effects from the radiotherapy treatment. The CNS gave appropriate advice about the relief of her dry mouth, reviewed her analgesics, and treated her candida. Information was given about when and how to clean her mouth and dentures, and the need for scrupulous mouth care was explained to her.
A referral was made to the dietitian who advised Mrs H to eat softer, moister foods. During this time, contact was made with Mrs H’s GP, district nurse and her community palliative CNS. The input of the palliative care team was invaluable in identifying reasons why Mrs H had been feeling so anxious, and they were able to help her address some unresolved personal issues.
Due to the complexity of Mrs H’s healthcare needs, the head and neck CNS continued to support her for some months after completing her cancer treatment, until it was appropriate to gradually hand over the role of key worker to the palliative care team. CNSs will be involved in patient care at each of these levels, but the specialist contribution should be orientated to those individuals with the most complex needs.
It’s important to note that although the levels are numbered in an order, level 1 shouldn’t be viewed as less consequential than level 4. The consultancy approach, by which best care is delivered by working through others, should be encouraged. Although the documentation of these levels is subjective and each CNS may describe interventions differently, which limits comparisons being drawn between different services, the act of articulating them can be a very valuable exercise in demonstrating the nature of service provision.
To make the process of recording data as efficient as possible, it should ideally be entered only once into a computerised excel spreadsheet or IT software. Some teams have specially designed systems such as Infoflex, which enable recording in different categories by patient and date. However, it’s our observation that the data entered into other IT systems used by Macmillan CNSs often doesn’t get revisited and reviewed (possibly because its retrieval requires more specialist IT skills) unless a manager expects regular reporting on role activities from the outset.
Furthermore, the data captured needs to be updated as CNS roles continue to evolve. Another software-based workload modelling tool is Pandora, which records different aspects of CNSs’ activity and is sensitive to identifying hidden elements of CNS activity such as ‘rescue’ work and connecting them to patient outcomes and organisational priorities (ie preventing an unscheduled admission; identifying complications early etc).
One of its advantages is the opportunity to record a narrative for each event, which fully describes the event in more detail and could be subject to qualitative analysis. While Pandora doesn’t characterise advanced or specialist practice, it helps paint a picture of CNS work.
We have discussed ways that CNSs might collect data to capture direct benefits to patient care.
There are of course other important less clinically-orientated activities which are integral to the CNS role, especially for posts graded at Band 7, including being a presence at multidisciplinary (MDT) meetings, taking a lead role in strategic planning within the Trust, and activities which enable specialist nursing to have influence across networks.
Although a Royal College of Nursing survey indicated that clinical activities dominated the CNS role, the broader benefits this role can bring to an organisation through service redesign and improvement should be considered. Such developments, while appropriate and responsive, may be forgotten when communicating outputs and overlooked by commissioners. For example the Payment by Results tariff for 2010/11 appears not to recognise nurse-led activity, including telephone work.
Increasing others’ awareness of the CNS role can only happen through our own efforts – both by disseminating data on role activity and day-to-day business. For example, the clinic staff who only have contact with the CNS in the outpatient department may assume this is the only part of the CNS role and not appreciate the other less visible role components, such as the many hours spent conducting valuable in-depth conversations with a person affected by cancer over the telephone.
A more conscious attempt to increase the visibility of the CNS’s contribution is warranted, and not just to those using the service, but also among the team. For example, through clear documentation of CNS interventions in MDT notes. This communication is all valuable ‘data’ which reaffirms the CNS contribution and raises role awareness. The next step is to gather data on what may have been achieved as a result of any CNS intervention.
Patient feedback is an obvious choice, which may include surveys, focus groups, satisfaction questionnaires or one-to-one interviews. There is also a growing interest in patient-reported outcomes, or PROMs, which can measure changes in patients’ own assessments of their health-related quality of life. Questionnaires could be given to patients to assess their self-reported health status before and after a CNS intervention to monitor its effectiveness. These activities can produce interesting qualitative data, but should be used in the knowledge that they may only suggest rather than substantiate a CNS’s contribution.
Concise but comprehensive information detailing what the Macmillan CNS has achieved and what benefits the role brings to the organisation should be communicated to those with power over the purse strings. This information may be disseminated via an annual report, newsletter or bulletin highlighting a new initiative or success story. It’s important to take advantage of patient stories, feedback from team members, and other qualitative data when writing these reports. This will complement what may otherwise be a numerical report of activity levels. The key message is to get the information out there and ensure the real story is heard.
The levels of intervention described may be familiar to many CNSs, but it’s not often that they are applied and used to demonstrate service activity.
This information was presented by Jackie as part of her Macmillan service review to indicate her service activity and explain the nature and frequency of complex patient care interventions. The Macmillan review is a process which encourages reflection upon the service’s initial and current objectives, strategies, core processes and operating environment, and then to make changes as appropriate. The template asks the Macmillan professional to demonstrate how their service is meeting intended need.
At the time of the review, Jackie was running a CNS oncology service three days a week. Her patient group includes people with a variety of head and neck cancers. The patients using this service are almost always known to the head and neck team, having met the previous oncology support CNS, or having been re-admitted with new problems or recurrence of their original disease.
She also sees around six new patients each month. Here Jackie describes the process she took to gather data and share her findings:
'I knew that patients referred to the service often require an intensive amount of support at points along their care pathway. Many have complex treatments, experience problematic symptoms, and can have progressive disease. I wanted to find a way to capture this.
All patients I see are routinely entered on to a clinical information management system called Infoflex. It seemed important to analyse the numeric data within Infoflex to try to make sense of my workload. I took all patient referrals in the period from January 2009-May 2010, and reviewed the Infoflex data I had entered for each of the 104 patients referred.
'It became clear that this data was more meaningful when combined with any written notes I had made about each patient, as they added depth and further detail about the nature of my involvement. ‘By reflecting on the interventions that had taken place with the patient, their carers and family, and other healthcare professionals involved, I found I could assess the level of my involvement with each patient referred during this time period and rate it according to its complexity. It was when I tabulated these findings in a graph (see below) that I appreciated the value of visibly demonstrating the level of care that was offered to each patient referred.'
‘I had also recorded any patient, family and carer feedback I received while I was actively involved in a patient’s care (see below into Infloflex. These can be recorded by opening up a separate file for comments or writing in the additional comments section on the Infoflex system.'
Claire has worked for Macmillan for fifteen years in three different roles: initially as a Macmillan Colorectal Cancer Nurse Specialist, then as a Macmillan Lecturer, and for the last five years as a Macmillan Associate. She also works as a Lecturer in Gastrointestinal Nursing at King’s College London. She has a particular interest in cancer follow-up and cancer survivorship. She is also a member of the Consequences of Cancer Treatment Collaborative. Email Claire|.
Jackie qualified as a nurse in 1989. She has a background in cancer and palliative care nursing and has worked at Charing Cross Hospital, the Royal Marsden Hospital, London and the Royal Free NHS Trust. She currently works at the East and North Hertfordshire NHS Trust where she is the Macmillan Clinical Nurse Specialist in Head and Neck Oncology. Email Jackie|.
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