World Cancer Day 2019: new perspectives on patient care

Involving cancer patients in improving rehabilitation services

The Transforming Cancer Services Team has developed service improvement tools for cancer rehabilitation, as part of a project funded by Macmillan Cancer Support.

David Jillings, Trustee of the Pelvic Radiation Disease Association, and Karen Turner, Oncology Therapy Service Lead & Clinical Specialist Physiotherapist at the Royal Free London NHS Foundation Trust & Marie Curie Hospice, share their experiences of developing the tools and the importance of focusing on patients’ perspective.

18 months ago we were both part of a group looking at cancer rehabilitation across London. We started discussing how we could measure what a good service looked like and talked about what would make a gold star service.

Early on it became obvious that we should be asking cancer patients what they valued and needed from a rehabilitation service. With the help of Georgina, a Macmillan project manager, we ran a session with a group of patients and those close to them to find out what really was important to them for their rehabilitation.

Some of the feedback we received we expected to hear, but there were some themes that we were surprised by and we wouldn’t have thought to have included without patient input.

We then ran a stakeholder event with professionals working in cancer rehabilitation. We were very pleased at the level of engagement and were encouraged by the fact that there was considerable common ground about what patients and professionals thought was important. We also discovered that there was a great appetite for a tool that would help measure and develop services.

The value of working with patients in true partnership

Georgina helped us pulled all the feedback together and as a group we decided to develop a service improvement tool. To make sure the tool was meaningful, we wanted to make sure the wording and questions addressed questions from the patient perspective. We also developed a short questionnaire for patients to fill out alongside the service improvement tool for staff to complete. Both tools are designed to be used together to provide a full picture, from both a patient and staff perspective.

We then went ahead and piloted our two tools; the improvement tool for staff and the service user feedback form tool. Several teams across London helped us to pilot these and we made a few minor revisions based on their experience of using them. The feedback was overwhelmingly positive. Rehabilitation teams felt that it was useful to measure what they were doing and to open themselves to new perspectives on patient care and experience.

We have now launched the service improvement tools for cancer rehabilitation they are freely available for use. We very much welcome further feedback on these and have provided a short evaluation form within the suite for this.

We’ve learned so many things through this process, but what we’ve really seen is that the way a service is viewed by its patients can be quite different from the way the service sees itself.

We have seen the value of working with patients from the very beginning, seeing them as experts and working together in true partnership to design something that is meaningful and ultimately results in improvements that matter most to patients.