Secondary breast cancer nurse specialists honoured for support given to patients from diagnosis
Winner of the Cancer Nursing Practice Award at the 2017 RCNi Nurse Awards is the Macmillan secondary breast cancer nurse specialist team at The Christie NHS Foundation Trust in Manchester
‘I got married in March last year, but was diagnosed with secondary breast cancer in June. Unbelievably, my husband was diagnosed with terminal cancer in July. Now we both have months to live,' says Jenny Sutcliffe.
‘I do not know how I would have coped without the absolutely amazing support and care of The Christie’s Macmillan secondary breast cancer nurse specialist team.
‘It is difficult getting through day-to-day, but these nurses make a terrible situation more bearable. I cannot put into words how much it means to know that they there for me and listen. They get it and they get me.
‘They are obviously clinical specialists, which gives you total confidence, and they have tailored their approach to my situation. Not only do they take in every word, they respond to it. They always have something else that might help and give you options.’
Jenny is just one of the patients who have benefitted from the work of a secondary breast cancer (SBC) team at The Christie NHS Foundation Trust in Manchester which helps patients understand their diagnosis and treatment and gives them a great sense of control.
For what the judges called ‘terrific’ results, the team of Sharon Foy, Rosalyn Fox, Claire Gaskell, Bethan Daniel and Julie Orford was this month named overall winner in the Cancer Nursing Practice category of the RCNi Nurse Awards, the profession’s top accolade.
The award, sponsored by Macmillan Cancer Support, recognises and rewards cancer nurses or teams who have improved the quality of care that patients receive at diagnosis, during and after treatment.
Realising that SBC patients were not getting the support they needed, The Christie’s breast cancer nurse team developed a designated clinic that supports patients from when they are diagnosed.
‘By mapping patients journeys and using our patient focus group, we identified gaps in the service particularly at diagnosis’
The team is led by Sharon Foy. ‘There were local and national drivers for the service,’ says Ms Foy. ‘It was recognised that nationally there was inadequate support for this patient group. There were high levels – more than 50% – of psychological morbidity. They needed more structured support from diagnosis onwards.
‘Locally, we had 2,500 new breast cancer patients each year and our referral criteria were too broad. This was not only unsustainable, but had meant inequality of access for patients.
‘We wanted to address this and become proactive rather than giving reactive care, often managing crisis. And we wanted to meet patients diagnosed with SBC within a month.’
A large scoping exercise identified gaps in services and peripheral hospitals were consulted. The team visited breast cancer units across Greater Manchester. They focused on primary disease and the majority of SBC patients had treatment at The Christie.
new breast cancer patients locally each year
As team member Ms Fox explains, ‘By mapping patients journeys and using our patient focus group, we identified gaps in the service particularly at diagnosis.’
As a result, the metastatic service was launched in July 2015. Patients are introduced to a nurse at their first medical appointment and receive an invitation to the clinic, along with a pre-questionnaire within a month.
Pre- and post-clinic questionnaires and clinic letters were developed in liaison with a research fellow and reviewed by the patient focus group.
‘We perform an in-depth assessment early on in a patient’s diagnosis to address initial concerns and discuss any appropriate support that is required for the future’
The group, which currently has 14 members and meets every two months, quickly became ‘an essential resource’ in the drive to meet the needs of SBC patients,’ says Ms Gaskell.
Integral to development
‘They are now integral to our service development,’ she says. ‘They have reviewed the wording of leaflets and letters, helped us develop and evaluate pathways of care and helped design health and well-being days.
‘This involvement has challenged us about any assumptions we may make or jargon we use and has ensured that the changes we have made are fit for the population they are designed for.’
To ensure its focus is holistic, the team designed a specific, full 45-minute assessment covering physical and social needs. Psychological concerns are assessed using two tools, the Hospital Anxiety and Depression Scale (HADS) and Concerns Checklist. It is done away from the busy medical environment.
was designed by the team to cover physical and social needs
Ms Daniel says: ‘We perform an in-depth assessment early on in a patient's diagnosis to address initial concerns and discuss any appropriate support that is required for the future. These validated tools provide a score that enables the nurse to grade and monitor the severity of patients' psychological morbidity over time.’
A carer or relative is welcome to attend and the patient receives written information and a resource pack to ensure patients understand their diagnosis and treatment options. The nurse completes any referrals to the hospital and community multidisciplinary team as required and signposts patients to sources of support at The Christie and in their local area.
Patients are stratified to specific nursing follow-up pathways according to level of concerns, disease burden and psychological status.
Two weeks after the clinic the patient is asked to complete the HADS and Concerns assessment. After four months the patient is followed up by telephone.
However, setting up the clinic was not without its challenges.
‘Management and board level support was imperative’
As Ms Fox explains: ‘Identifying new SBC patients with 14 consultants was challenging. We overcame this by working alongside doctors and being very clear about referral criteria.
‘We communicated the change in service at every level. Liaising with breast cancer nurses in peripheral sites and attending multidisciplinary meetings helped.’
Practical issues included ensuring administrative support was in place and that staff were trained to ensure data collection was completed. Identifying ‘much sought after’ clinic space proved difficult at first.
‘Management and board level support was imperative,’ says Ms Fox.
Careful thought, research and planning went into how to evaluate the service from the outset to ensure it could demonstrate it improved patient care.
By September 2016, 71 patients had been invited to clinic and 49 had attended. Data for the first 25 patients' pre- and post-evaluation questionnaires show that the clinic is ensuring that patients receive the information they need. Prior to the appointment, 50% of patients had unanswered questions about their diagnosis, which reduced to 8% post-clinic.
in patients’ understanding of their treatment plan before attendance
Only 66% of patients understood their treatment plan before attending, but this increased to 87% afterwards. More patients felt supported. Measured on a scale of 1-10, the patients’ sense of support rose from 7.38 to 8.89. They also reported feeling more in control. On a scale ranging 1-10, their sense of control increased from 5.97 to 7.85.
The evaluation also shows improved patient awareness of available support and that they had greater contact with community services.
Confidence in treatment
‘Qualitatively, patients reported the appointment had been beneficial in providing unrushed time for them to talk about fears and feelings, gain greater clarity of information, develop confidence in the treatment and support available and obtain practical advice,’ says Ms Fox.
One patient stated: ‘I felt a lot better after getting a clear explanation… She reiterated what I'd been told, but positively, and understood how frustrating it is that nothing definite can be said about how long the future is.’ Another stated the clinic gave ‘confidence I am getting the support I need for my condition and not being overlooked’.
‘By providing a holistic service, they have improved the quality of care and support for people, and demonstrated outstanding impact. They truly deserve to win the Cancer Nursing Practice Nurse Award’
Director of nursing and quality at The Christie Jackie Bird is ‘so very proud of the team’ for winning such a prestigious award.
‘The team has worked with real drive and passion to develop a high quality, patient-centred service which our patients living with secondary breast cancer, their families and members of the wider multi-professional team see as being a gold standard service.
‘Its vision in ensuring all patients newly diagnosed with secondary breast cancer have nurse-led specialist support from the outset of their diagnosis and treatment has been pivotal in developing this innovative service and ensuring excellence in patient care.’
Macmillan Cancer Support learning and development manager Tony Banach was on the Nurse Awards judging panel. He applauded the team’s ‘terrific’ results.
‘Recognising that the needs of people with SBC were not always being met, this team developed a proactive nurse-led clinic to ensure that their concerns were identified and supported much closer to the time of diagnosis,’ he said.
‘By providing a holistic service, they have improved the quality of care and support for people, and demonstrated outstanding impact. They truly deserve to win the Cancer Nursing Practice Nurse Award.’
‘Its vision in ensuring all patients newly diagnosed with secondary breast cancer have nurse-led specialist support from the outset of their diagnosis and treatment has been pivotal in developing this innovative service and ensuring excellence in patient care’
Despite their achievements, the team is already looking at the future.
Team member Ms Daniel says its aim is to provide a comprehensive and sustainable support pathway for SBC patients, focusing particularly on the first year of their diagnosis to provide a proactive rather than reactive service.
‘In addition to the nurse-led clinic, all patients will receive follow up appointments through a telephone clinic,’ she adds. ‘Here, patients will be stratified to plan appropriate future follow up.
‘All patients will then be invited to a health and well-being day, which are currently bi-annual events.’
‘I simply don’t know what I would have done without these fabulous nurses. They are my refuge’
The team is also working closely with Macmillan Manchester Cancer to influence the development of a designated metastatic breast cancer pathway and supporting the setting up of potential similar nurse-led clinics in peripheral sites.
For patient Jenny Sutcliffe, this is crucial. ‘Everyone in a situation like mine should have access to a service like this,’ she says.
‘I simply don’t know what I would have done without these fabulous nurses. They are my refuge.’
You can read about Jenny’s experience in full here
Anne Hope, Royal Surrey County NHS Foundation Trust
Clinical nurse specialist Anne Hope helped secure funding for a head and neck cancer care and rehabilitation service addressing survivors’ complex needs and improving their quality of life. She established the core multidisciplinary team of speech and language therapists, dieticians, a nutrition nurse and a care coordinator
Ms Hope works with clinical nurse specialists across five hospitals to ensure care is streamlined and as close as possible to home. The team has reduced avoidable re-admissions, inappropriate emergency department attendance and post-treatment surgery complication.
Donna Cummings, Central Manchester University Hospitals NHS Foundation Trust
Critical Care Matron Donna Cummings introduced and implemented I COUGH UK - a low cost, nurse led, care bundle encompassing lung optimisation, oral healthcare and early mobilisation to reduce complications following major cancer surgery by reducing respiratory complications.
Ms Cummings also plays a central role in the complementary Surgery School - a multidisciplinary led forum that major cancer surgery patients and their relatives are invited to attend prior to surgery.
Post-operative pulmonary complications have fallen from 18.7% to 8.7% and the length of hospital stay has reduced.
Michele Pengelly, Velindre NHS Trust, Cardiff
Inspired by bereaved children’s experiences, supportive care lead nurse Michele researched and wrote a book to help newly diagnosed patients talk to their children about cancer.
The series, supported by guidance for parents and training sessions for cancer nurses, is accessible and suitable for single and same sex parents and includes British Sign Language and audio versions.
More than 200 families have used the books, which are being developed to include grandparents, siblings, different ethnic groups and people with disabilities.
Urology oncology nurse specialist team, Royal Devon and Exeter NHS Foundation Trust
The team introduced pre-surgery health and well-being clinics specifically for robotically assisted laparoscopic prostatectomy patients to address high non-attendance (DNA) and cancellation rates at generic clinics.
The sessions for patients and carers include a presentation, small group breakouts, peer support opportunities and a Q&A with a patient representative.
During a pilot the DNA rate was 1.9% compared with 31% at generic clinics. Patients feel less isolated, more in control and better informed. Carers feel more able to support their loved ones.
Macmillan advanced urology nurse practitioner Sarah Minns set up a prostate cancer screening clinic in her own time at a local football club in Burton upon Trent, Staffordshire, to raise awareness of the disease
Having ensured the football club and its associated charities were on board, Ms Minns, who works for Burton Hospitals NHS Foundation Trust, planned and collected all the necessary equipment and helped design the pro forma.
‘We set up a proper clinic as if we were in the hospital,’ she explains.
Ms Minns was a finalist in the Superdrug-sponsored Community category of the RCNi Nurse Awards.
She first raised awareness through her local newspaper. ‘It profiled the different journeys experienced by patients and the different treatments,’ she says.
‘We wanted men to know there is life after a cancer diagnosis and hopefully get them to come and talk to us.’
At a match in aid of Prostate Cancer UK, Ms Minns gave out leaflets in the stands and took bookings for screening the following week.
Of the 113 men screened over two days, eight were diagnosed with prostate cancer, two with metastatic disease. Ms Minns negotiated with the clinical commissioning group to enable her to support the men through their journey.
‘All were asymptomatic – they were not planning to go to their GP,’ she says.
‘All had a rectal examination, which shows the importance of this being done by a specialist. We know that early diagnosis improves outcomes in cancer.
‘We secured permission that if we felt they needed investigation we dealt with it. Within two weeks they were back in clinic for their treatment plan.
‘We are aware that it is just awful waiting for possible diagnosis of cancer.’
A survey showed 95% of the men were satisfied with the service, with 83% preferring screening at the football club or a primary care setting.
‘I am proud of our project and the way it has been supported by our community and the national media,’ says Ms Minns.
‘The initial aim of the project was to raise awareness of prostate cancer and get men discussing this disease. We engaged with them at our local football club because it was an environment they feel comfortable in.
‘But the project has attracted national press coverage, and in doing so, has enabled us to reach a wider population. We are looking at this model for other diseases.’
The Cancer Nursing Practice Award is sponsored by We Are MacMillan Cancer Support