Personalising care for patients with bladder cancer
‘Respectfully, after having seven cystoscopies, I have never been able to sit down and discuss with a doctor the position with my cancer.’
It was this patient experience, captured by the National Cancer Patient Experience Survey 2013, that spurred Christine Talboys on to review and improve the way patients received information about their diagnosis of non-muscle-invasive bladder cancer (NMIBC).
‘I had also been directly involved in dealing with verbal complaints from patients who had not received their diagnosis,’ explains the urology advanced nurse specialist at Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust. ‘This was unacceptable. These patients were sometimes not receiving the same high standard of care that other cancer patients in our service were experiencing.’
Her retrospective audit of patient notes found there was no standard process for informing patients of their histology results – 13 were told at an outpatient appointment, ten by letter and two by telephone. One had to attend his GP for the results and there was no documented communication from the hospital in two cases.
The timescale for informing patients of results was also haphazard owing to the lack of standardisation, taking up to 50 days for some patients.
Contacting diagnosed patients
So Ms Talboys posted a questionnaire to 38 diagnosed patients asking how they would have preferred to have been informed and their knowledge level about their condition. She received 21 completed questionnaires, a 55% response rate.
Only 33% of patients were able to recall the grade of their cancer and 72% were aware of the stage.
Ms Talboys says: ‘I wanted to ensure that every patient receives the same level of personalised information about their cancer, as well as the opportunity to ask questions in a timely manner.
‘I am particularly proud of the personalised care plan that we developed as it is focused specifically for patients with NMIBC. It gives them a detailed, yet understandable, explanation of transitional cell carcinoma and NMIBC stages and grades, as well as health promotion advice on smoking risks. It also details the follow up that patients can expect to receive.’
Importantly, a bespoke diagram for patients only encompasses the non-muscle-invasive tumour stages.
‘All other diagrams that depict bladder cancer show all of the stages which can be very frightening to someone with a “superficial” tumour,’ says Ms Talboys.
Focus group challenge
After the multidisciplinary team (MDT) agreed the care plan, she sought feedback from a patient focus group. She says: ‘I saw the focus group as a challenge as I had never done this before, so I liaised with the patient engagement manager who agreed to facilitate the group on my behalf.’
The clinical nurse specialist (CNS) team now book newly diagnosed patients directly into a nurse-led results outpatient clinic as soon as they have been discussed by the MDT. At the clinic patients are informed of their diagnosis and given a copy of the personalised care plan to keep.
The MDT has seen the benefits of Ms Talboys’ approach.
Consultant urological surgeon at Royal Bournemouth Hospital Kevin Turner says: ‘Christine and her team have worked hard to ensure that patients with a new diagnosis are informed of it without delay. With the consultant clinics constantly under pressure, the nurse-led clinic allows for these patients to be seen in a timely manner.
‘This has undoubtedly led to better patient satisfaction, and the feedback has been very complimentary. We are often told by our patients that waiting for results is the hardest part, and this project has cut the waiting times considerably.’
He adds that the care plan has been a useful tool that has allowed patients to take home a written record of their diagnosis.
‘Having the follow-up schedule documented in the care plan, and the contact details of the nursing team readily available, has meant patients feel supported throughout their cancer journey,’ says Mr Turner.
Plans for the future
Other trusts have already shown interest in the plan, but Ms Talboys wants to take her project further. While 86% of patients preferred face-to-face contact, 14% would have preferred a letter detailing their diagnosis. ‘Our next step is to find a method of capturing patient choice at some point in the pathway in order to tailor the follow up,’ she says.
‘We do not have a fully formalised process yet, but we are piloting the nurse practitioners, who do the post-operative ward rounds, asking patients their preference and then passing these details on to the CNS team. It seems to be working reasonably well, but needs to be more robust as it is not capturing all of the patients currently.’
The project saw Ms Talboys shortlisted in the Cancer Nursing category at the RCNi Nurse Awards 2016.
She is proud of the difference her project is already making to patients.
‘It allows them an opportunity to ask questions about their pathway and future care, and enhances their overall experience. The CNS team are ideally placed to coordinate this initiative and are able to offer patients continuity of care throughout their difficult cancer journey.’
Results have been ‘very encouraging’
Christine Talboys improved communication with patients as part of the Mary Seacole leadership development programme at the NHS Leadership Academy.
The programme requires participants to identify an area of work needing improvement that would directly benefit patients.
‘I was passionate about making these changes and the programme helped to keep me focused and the momentum going,’ Ms Talboys says.
‘I used plan-do-study-act cycles, which allow for small changes to be made and evaluated, and are manageable alongside a busy workload.’
Patient satisfaction with the new process was captured at the time of the nurse-led results clinic appointments by asking patients to complete an evaluation form.
The results have been ‘very encouraging’, says Ms Talboys. Before the initiative, only 33% of patients were able to recall the grade of their cancer and 72% were aware of the stage. Since introducing the personalised care plan, 100% of patients know their grade and 94% can recall the stage of their tumour.
There has also been a cut in the time it takes for patients to receive their histology results from 17 to 13 days. ‘We are striving to improve this further,’ she adds.
The care plan was also well received and gained complimentary feedback. Comments received during the evaluation include: ‘was nice to be told in person exactly what has/is going to happen/happened’ and ‘very well explained, great bedside manner!’
Cancer Nursing Practice would like to thank Macmillan Cancer Support for sponsoring the Cancer Nursing award at the RCNi Nurse Awards 2016
Christine Talboys is urology advanced nurse specialist at Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust