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Listen
Involving Patients and their Carers
'Everything we do should be focused on patients and their carers'
It was important to get the views of not only the staff working within the service but also the patients who experience the care. This was achieved by undertaking interviews with over 50 patients and their carers who had undergone and completed treatment for cancer.
The team undertook work with patients and their carers using two different approaches:
1. Patient Interviews/Stories: in collaboration with RCN leadership course participants and Macmillan Patient Public Involvement Workers interviews are undertaken with patients and their carers in their own home
2. Patient and carer mapping events: where patients discuss their experience with the regional facilitators using one to one interviews. The Clinical Nurse Specialists ( CNS) in each of the areas identified patients willing to participate in the process. It was important to interview patients along with their family members outwith the hospital environment they had attended.
All interviews were undertaken using the same interview spine, highlighted below, to focus patients and their carers on the story throughout the whole journey. The stories were then fed back to each multidisciplinary team anonymously.
The stories were not meant to be fully representative of a large number of patients but were meant to engage patients in talking about their journey through the service.
By working with the clinical teams using the PDSA model, the areas for improvement which were identified by patients and family members were implemented quickly and have been sustained.
There was additional benefit to advising the staff of the patients' views at the introduction to the service mapping events, in this way focussing the teams not only on how 'they think' the service would best be provided but what their 'patients' think' would be an improvement. To date this has been a much more successful means of ensuring patients' views are considered when implementing improvements and changes to the service.
It was very important to feed back to patients and carers about the improvements made to the service as a result of their valuable input and this was done through follow-up patient events. Whilst the stories are not fully representative of all patients, the issues they raised are still important to all patients. If changes from a small number of patient stories can be implemented, they will bring improvement for all cancer patients.
The following examples illustrate some of the improvements achieved across Scotland and the impact they have had on the cancer patient's experience.
Concern: Some patients highlighted that they did not receive enough support when they left hospital after their treatment was complete. One stated "after the treatment was completed I felt out on a limb" and "breast cancer patients appear to get more aftercare".
Actions: The colorectal clinical nurse specialist ( CNS) with agreement from the consultants, designed a new follow up protocol and form to record a follow up plan. This is now done for each patient after their initial treatment plan is agreed and is discussed and completed at a weekly multidisciplinary team meeting. The CNS then telephones the patient at home to let them know exactly what is going to happen to them.
Colorectal clinical nurse specialists ( CNS) from two areas in Scotland have undergone extra training and have developed new nurse led clinics. This has enabled them to review patients at agreed intervals following colorectal surgery. The patients benefit from a multidisciplinary team approach and are aware that they will have regular follow up appointments with support and guidance from their CNS.
Concern: "need more chairs in chemo day area that recline and get your feet up, chairs not comfortable if sitting for a long time" (patient)
Action: This was brought to the attention of staff within chemotherapy and the need to review all seating. Suitable chairs have been tested and purchased for patient comfort.
Concern: Patients also commented that they received too many visitors while in the high dependency unit after their surgery.
Action: The hospital issued a new "visiting guideline" and have reinforced this to both visitors and nursing staff. The nurses are now controlling the amount of visitors to the unit in line with the new guidance and the patients are experiencing less noise while recovering from their surgery.
Patient Mapping, Maggie's Centre, Ninewells Hospital'
"I'm so glad to see some of the issues I mentioned at the mapping being addressed in the work that is being taken forward".
Patient from Fife involved in patient mapping event
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