Supporting patients throughout their cancer journey in Cheshire and Merseyside

Supporting patients throughout their cancer journey in Cheshire and Merseyside

By Sharon Rowe, Workforce Transformation & Education Lead

Being diagnosed and treated for cancer can be a hugely daunting experience.

Patients can suffer stress after diagnosis, can be confused at the array of appointments and therapy options, and can be unsure of how to cope and stay healthy after the conclusion of their treatment.

But over the past few years, support for patients has been available in the form of Cancer Support Workers (CSW) and Cancer Navigators (CN), who can help to guide patients through their personal cancer ‘journey’, from diagnosis to aftercare.

There are now 120 CSWs/CNs across Cheshire and Merseyside, one of the largest such workforces in the country, supporting patients across several tumour types to improve outcomes and their experience of cancer treatment and follow-up.

As part of various personalised care projects across Cheshire and Merseyside, since 2018, thousands of patients have benefited from working with a CSW/CN as a part of their care.

The role is focused on a partnership with the patient at every stage of their cancer journey to help them in navigating the health and social care system and providing emotional and day-to-day support.

This could be signposting to services, including those in the community, or arranging appointments. They are there to help patients make choices that are best for their cancer and their life.

Working, typically, at Band 4, a CSW/CN provides seamless care and coordination of care between care providers and patients. For patients, they can be the glue that holds their care together and helps them to live their lives to their potential, whilst accessing the care and support they need, when they need it.

CSW/CN roles, job titles and day-to-day tasks vary depending on local context and priorities, however, the overall aim of the role remains the same – offering the right support to patients at the right time and supporting people to manage their own care.

The CSW/CN works as part of the cancer care team alongside registered practitioners, usually a Clinical Nurse Specialist (CNS).

They are essential communicators between primary and secondary care – largely between the patient’s GP and the hospitals that treat them for their cancer – having the capacity to keep healthcare professionals informed of the patient’s whereabouts in the diagnostic and treatment pathway. This also helps to build relationships across organisations.

The CSW/CN is essential to the effective communication between patients, their GP and the multi-disciplinary team at the hospital.

This could include help with issues that might arise as a person’s cancer progresses, such as financial insecurity and declining mental health, which could affect a person’s quality of life.

SUPPORT DURING COVID

During COVID many Clinical Nurse Specialists were redeployed to priority areas within hospital trusts and CSWs became essential in offering telephone support and advice to patients who were left feeling isolated and concerned that their care might be disrupted.

Many patients who had completed their cancer treatment were also worried about their follow-up and the advice at that time was not to attend hospital out-patient clinics.

Personalised Stratified Follow-up (PSFU) has been successfully implemented across ten NHS trusts including breast, colorectal prostate and other tumour groups.

This initiative, delivered by Clinical Nurse Specialists and Cancer Support Workers/Navigators, provides Health and Wellbeing workshops with tailored education and support to patients who have concluded primary cancer treatment. 

Patients discuss clinical issues with a CNS, whilst the CSW/CN offers information and advice regarding non-clinical worries and is a ‘first line of contact’. During the Covid-19 pandemic all physical workshops were paused and there was a regional backlog of patients requiring workshops.

Cheshire and Merseyside Cancer Alliance devised a Virtual Group Workshop (VGW) Training Programme enabling CNS and CSW/CN to gain confidence with the technology and deliver VGW to their patients.

To date, over 200 patients have attended virtual workshops facilitated by Clinical Nurse Specialist and Cancer Supports Workers and have had great feedback from patients:

‘Video workshop was very well presented and the quality of the video and sound was excellent’

‘I found it very inspiring, informative and a lot of information well presented’

 ‘…Talking to other patients made me feel less isolated’

The training programme has developed a national interest and many of our trusts are now continuing to offer VGW along with physical workshops – one trust has even been entered for a Macmillan Award.

THE HOLISTIC CARE OF EVERY PATIENT

During a patient’s treatment, the CSW/CN works alongside the Clinical Nurse Specialist (CNS). Some take the lead in offering supportive conversation and care planning for patients.

Care planning means a discussion with the patient to talk about their physical, psychological, spiritual and social needs. The focus is on the patient as a whole – not just their illness.

By engaging in supportive conversations the CSW/CN can establish fully how cancer is affecting each individual and direct patients to appropriate local support to help them feel in control of their care and learn how to manage everyday life during treatment and recovery.

Care planning ensures that people’s physical, practical, emotional, spiritual and social needs are met in a timely and appropriate way, and that resources are targeted to those who need them most.

Care planning can take the form of a simple questionnaire completed by the patient to allow them to highlight the most important issues to them at that time, this can inform the development of a care and support plan with their nurse or key worker. It also enables early intervention and diagnosis of side effects or consequences of treatment.

As such, everyone living with or beyond cancer should be offered a supportive conversation and a care and support plan at key stages on their cancer pathway as part of their Recovery Package.

Evidence also suggests that a person’s holistic needs are likely to change at key points in their cancer journey, like after diagnosis and at the end of treatment, or if something else affects their health or social needs. Having care planning at these points helps to identify the issues that need to be discussed and can be used to continually inform their care and support plan.

The following concerns are examples of what might be discussed in during care planning:

• Practical – money, work or household tasks
• Family/relationship – changes in your relationships
• Emotional – depression, fears, worry, anger or anxiety
• Spiritual/religious – loss of faith, loss of meaning or purpose
• Physical – appearance, eating, fatigue
• Other concerns – advice on healthy lifestyle changes, such as stopping smoking, diet and cutting down on alcohol 

The information gathered from care planning can also be shared with the multidisciplinary team (MDT) and the person’s GP, to improve management and care. Any data collected can be used to influence service developments and the commissioning of future services.

It gives the patient the opportunity to talk about any worries or concerns they may have. It helps to clarify the patient’s needs and the CSW/CN is then able to ensure that they are referred to the relevant services.

An important element of the CSW/CN role is the ability to recognise when those concerns need to be escalated to a registered practitioner.

Uniquely, CSW/CNs are in direct liaison with patients and their families to coordinate appointments, advise on referrals, resolve concerns and triage incoming enquires to the CNS team.

They are also responsible for documenting and monitoring all aspects of care coordination and service delivery, which includes supporting data collection and record keeping for audits.

When a patient has completed their cancer treatment, they will need follow-up care. This can be supported by a CSW/CN who acts as a single point of contact via telephone and/or email for non-complex patients.

Every situation and every patient are, of course, very different but from pre to post diagnosis, all patients embark on an anxious and sometimes bewildering journey. At every stage, they meet various health professionals who may give information about investigations or treatments that may be difficult to understand.

But at each turn in the road, the CSW/CN is there to help, providing crucial personalised care which can make a hugely positive impact on every patient’s experience of cancer.

WHAT MAKES A GOOD SUPPORT WORKER?

There is no ‘one size fits all’ job description for a CSW/CN and whilst flexibility and variation to meet local need is appropriate and expected in job roles but there are some common threads in how they improve the lives of cancer patients, with a key requirement being excellent communication skills and a high degree of empathy, understanding, honesty and integrity.

The majority of CSWs/CNs are embedded within cancer teams but have the advantage of being able to offer administrative and clerical support when required. It is a ‘hybrid’ role to meet patients’ needs.

The CSW/CN is there to guide patients through the complex healthcare system and is proactive in organising key events in the patient’s pathway, ensuring all relevant information, such as test results, are available and communicated to both the patient and the hospital clinical team and GP. Therefore, a CSW/CN needs to be well organised as the role involves varied administrative duties.

By listening to patients, these workers can identify what matters to the patient and translate this into collaborative personalised care, as well as identifying unique strengths and resources to help them cope.

The CSW/CN can also be instrumental in beginning a conversation to promote a healthy lifestyle especially if patients are more receptive to altering unhealthy habits. Engaging with people through teachable moments – through the mantra of Making Every Contact Count (MECC) – supports individuals and their families to make positive changes to their physical and mental health and wellbeing.

Successful CSWs/CNs also require:

• excellent IT skills
• be able to manage a database
• can respond to email and telephone concerns from patients
• can access a range of hospital systems to support the cancer nurse specialist team to plan patient care and follow up

Furthermore, they must be able to provide education sessions to patients on how to use the patient portal in both face-to-face and virtual format and be able to signpost patients to services across a wide area. 

They must be flexible in approach, able to exercise initiative and have a consistently high standard of professionalism and an awareness of the importance of maintaining confidentiality. They must also be willing to undertake on-going training and development, supported by the clinical team.

HOW CMCA DEVELOPS THE WORKFORCE

The CSW/CN roles have been recognised nationally and locally as best practice in reaching innovative solutions to support the cancer workforce and improve patient experience.

However, challenges surrounding the role for those recruited and other healthcare staff are amplified by the failure to standardise their title and the lack of a recognised training and education programme.

The exponential growth of the workforce requires investment in training, education and development of a career framework to encourage recruitment and retention, so that there are clear routes into the profession and routes for progression.

The challenge we need to meet in the CSW/CN role is to embed it into the array of cancer professionals within the NHS.

The Alliance has a development programme for them, which includes training and education in core skills required for the role.

These include communication skills, cancer awareness, HNA planning and recording, cancer pathways, cancer treatments and follow-up surveillance and support, MECC, motivational interviewing, facilitation training, psychology training, supporting healthy living and personalised care.

CMCA has been instrumental in recruiting people to these innovative new roles, with many so highly valued locally that they have become substantive posts.

Health Education England has funded North West Cancer Alliances to lead on a national programme of work to understand the role and its development and standardise a competency and educational framework.

CMCA also organises Share And Learn events – now online - where CSW/CNs discuss their role, make new contacts, support each other in their role, pass round best practice and share new ideas.

The events were paused due to the pandemic but began again virtually in July 2021 and gave the support workers chance to discuss how they coped in their role while living through COVID-19.

Feedback from the session – which 34 CSWs attended – was overwhelmingly positive, with attendees expressing the following comments:

“I really enjoyed today, as the only CSW/CN in my team you do feel a little lonesome at times, especially when you don't know whether what you are trying to do, or implement is working. Listening to everyone has underlined the fact that I'm doing ok.”

“It was really beneficial. I’d like to see this session become a regular meeting.”

“Helpful and nice to see how everyone is getting on. Also, I didn't realise how many CSWs are now in post, which is great to hear.”

“This is only the second Alliance session I have attended and on both occasions I've come away with a sense of not being so alone with it all and having a wider support network, which is easy to forget sometimes when you're in the thick of it! Thank you for arranging these valuable events, it is much appreciated and I look forward to the next one.”

“It was a great insight to the varied tasks of a CSW and, with only being in post for two weeks, the meeting helped me feel supported in my role and also gave me lots of email addresses for people I can pester!”

“It’s nice to feel included and to listen and learn from those how have been in post a lot longer than me.”

CMCA will continue to support these much-needed opportunities for collaboration and exchanging ideas.

KEY LEARNING FROM THE CSW/CN PROGRAMME

For anyone looking at bringing CSWs/CNs into their service offering, there are five key lessons learned from our experience in Cheshire and Merseyside:

Good people skills are vital: CSWs/CNs must be good ‘people people’. Our experience in Cheshire and Merseyside has shown that communication and organisational skills are essential to the role. As well as being calm and objective, empathy is important to ensure that they are able to understand the difficulties faced by people affected with cancer to ensure that they can deal with the sometimes complex and difficult emotional situations that patients are experiencing.

Health and social care qualifications are helpful: People skills are a vital part of what makes a good CSW/CN but clinical knowledge, experience and training is also required. Most CSW/CN roles require a successful candidate to demonstrate NVQ 3/4 plus additional training to diploma level (or equivalent) or health and social care experience at Band 3 or equivalent. To thrive in the role, they should have an understanding of person-centred care, IT skills and effective organisation skills.

It is important to measure staff satisfaction among CSWs: In Cheshire and Merseyside, we have continually measured staff satisfaction among CSWs in various locations and settings. Continually monitoring staff satisfaction for what is a relatively new role can help to build a strong evidence-base for future implementations. We have had continually positive feedback. A survey undertaken in December 2018 demonstrated that over 85% of CSWs would choose to stay in their roles within their trusts, with 83% reporting positive recognition for their work.

Peer supervision really works: In Cheshire and Merseyside, we have seen the benefit of peer supervision for CSWs. In regular ‘team briefs’, CSWs have the opportunity to discuss any issues related to their role (such as challenging or distressing experiences in caring for a patient) in a safe environment with a mentor or colleague. The CSW Review undertaken in May 2019 shows that “peer supervision remains an integral part of the development and sustainability of the role”, demonstrating how valuable it remains for both personal and professional development.