Part of the School of Health & Psychological Sciences’ Dean’s Lecture Series, the lecture was delivered by Professor Sally Kendall MBE, drawing on her personal experience as a breast cancer patient during the pandemic to explore questions that are necessary to consider in community nursing research, policy and practice.
Community nurses (also known as community health nurses) provide invaluable care to people in their own homes, care homes, or close to where they live, in clinics and GP practices. They also provide public health, preventative and outreach services to the community and those who may not have a secure home.
Lisbeth Hockey OBE FRCN (17 October 1918 – 16 June 2004) was an Austrian-born British nurse and researcher. In 1971 she became the first director of the Nursing Research Unit in Edinburgh, and was awarded a PhD by City, University of London for research in nursing, one of the first people to do so.
Dr Hockey was the founder of the International Collaboration for Community Health Nursing Research (ICCHNR) in the UK, and was inspired to take the work forward and develop the UK charity through her work with Professor Shirley Stinson from the University of Alberta, Canada where the first ICCHNR conference was inaugurated.
She is a role model and inspiration for community nursing researchers across the world, and why the ICCHNR has hosted the annual Lisbeth Hockey Memorial Lecture in her honour for the last three years.
This year the Memorial Lecture was hosted in collaboration with the School of Health & Psychological Sciences at City, University of London as part of its Dean’s Lecture Series.
The lecture was delivered by Sally Kendall MBE, Ph.D. who is Professor of Community Nursing and Public Health, at the University of Kent.
In her lecture, Professor Kendall drew on her personal experience as a breast cancer patient during the COVID-19 pandemic in order to explore questions that are necessary to consider in community nursing research, policy and practice.
She began by framing her experience as an ‘n=1 study’, meaning a study with solely one test subject, but through which the best interventions to help that individual patient may be determined using objective, data-driven criteria, mediated by the patient experience.
Professor Kendall then spoke about the principles of integrated community nursing care, including the requirement that those involved with planning and providing services impose the patient perspective as the organising principle of service delivery to ensure that it is at the core of any decision-making about care.
She highlighted the high burden of breast cancer across the world and the UK statistics of annual incidence (about 56,000 new cases each year), deaths (about 11,500 a year) and 10-year survival rates (75%) of the disease and the importance of health services adhering to evidence-based protocols to optimally diagnose and treat the condition.
Professor Kendall also touched on existing barriers to researcher's understanding of the role of the nurse, which can be overcome by understanding the role from the perspective of the patient and their experience. She relayed her personal experience of being a breast cancer patient during the COVID-19 pandemic.
A patient’s experience of breast cancer during the COVID-19 pandemic
In October 2019, Professor Kendall noticed changes in her breast during self-examination. She booked an urgent GP consultation within hours and received a referral for a breast care clinic consultation within four days. There she underwent a lymph node biopsy and a CT scan to receive her positive diagnosis of stage 3 breast cancer.
Her diagnosis meant radical mastectomy surgery, the most complex type of surgery for breast cancer, where the entire breast and majority of lymph nodes are removed, and which for her resulted in axilliary web syndrome, a type of cording of the tissues of the armpit common after breast cancer surgery. She also needed to care for her wounds from surgery including appropriate drainage.
And then the COVID-19 pandemic hit the UK in February 2020.
At this time she had to be treated in hospital with chemotherapy, 15 rounds of radiotherapy, and drug therapy (letrozole and bisphosphonate), and for physiotherapy and scar therapy, following her surgery. She had to have a peripherally inserted central catheter (PICC) line inserted deep into her body to deliver her chemotherapy, and suffered from neutropenic sepsis from a weakened immune system from her treatment, a condition which can be life-threatening. Professor Kendall shared how her hospitalisation for neutropenic sepsis at the start of the pandemic was extremely isolating and frightening. She also experienced hair loss from treatment and required a consultation with a plastic surgeon to discuss reconstruction options post her surgery.
Along with psychotherapy, she had to ask herself: how could she integrate all these negative experiences into a sense of self?
Professor Kendall explained the high level of teamwork that had to happen between herself, her primary care (GP) and breast cancer care teams to receive such a quick diagnosis; the uncertain waiting game for treatment; and then the lonely, painful experience of treatment during the pandemic: of being cut, poisoned and burned during treatment, leading to a disintegration of mind and body, a loss of self and agency, while cut off and shielded from her husband and other loved ones. The feeling of being lost in a labyrinth of protocols and prescriptions.
She stressed the importance of self-agency under such adverse circumstances: to be able to accept the diagnosis, take informed risks, put trust in clinical staff, and have a voice in your own care. With the ability to do this thrown into disarray by the COVID-19 pandemic, and the uncertainty for patients and staff alike.
Professor Kendall also commented on some of her direct experiences with nurses. The importance of her breast care nurse, chemo nurse and district nurse, the deep empathy of a ward nurse during sepsis, but also how from a patient perspective she felt sometimes her nurses could not always empathise or sympathise with her experiences, which she found frustrating and disheartening.
She offered her suggestion for a model of person-centred, integrated community nursing, which begins with establishing good communication from the start. It means ensuring the patient is heard and understood with consideration of their past experiences; following the clinical guidelines and sharing the rationale for those guidelines the patient, and sharing difficult news and reactions with compassion; recognising that a patient’s self-agency might be compromised through fear and loss of a sense of self; discussing treatment decisions with the patient at every stage, including the end of treatment; involving family and friends, and engaging with other healthcare professionals providing care including the GP, the patient’s wider multidisciplinary team (MDT) and cancer nursing team; and always being both accessible and authentic.
Professor Kendall completed her moving lecture by taking a range of questions from the audience.
NHS England Community Nursing Research Awards 2022
Prior to the Lisbeth Hockey Memorial Lecture, a ceremony took place to award the NHS England Community Nursing Research Awards 2022, which recognise excellence in Community Nursing research and are awarded in collaboration with the ICCHNR.
Reflecting on the lecture and award ceremony, Professor Debra Salmon, Dean of the School of Health & Psychological Sciences, said:
Find out more
Visit the webpage of the Department of Nursing, School of Health & Psychological Sciences, City, University of London.