|
The St. Mary’s Colorectal Cancer Services patient user group has been running since September 2001. It was set up by Nurse Consultant Paula Taylor, prior to the Cancer Peer Review, with the support of Professor Darzi. He offered some funding (£500). Paula had peer support from a Nurse Consultant in Croydon who had successfully set up a user group in continence care.
Reasons for the initiative
- to hear about the journey of care, from beginning to end, from the patient’s point of view
- to get the views of the patients on new ideas and initiatives before using them in the hospital.
Setting up the group
It was felt important that there should be a clear distinction between
a User group, and a Support group: it was necessary to select a group
of patients rather than to ask for volunteers. The first members were
chosen from the colorectal nurse’s cancer database mainly on the
grounds that they were currently well, and so were fit enough to attend
regular meetings and were willing to be involved.
Mission statement The first meeting was not entirely successful. The participants needed more encouragement to introduce themselves and get to know each other, and were reluctant to speak. There were practical issues to resolve about the venue. |
Activities
The group offered to pilot a new cancer
patient satisfaction questionnaire to see if this would be suitable
for St Mary’s patients.
The main concerns raised at the first meeting were the very long waiting
times
- in out-patients for blood tests
- for follow-up appointments
- to collect prescriptions from pharmacy.
These concerns were subsequently raised by the nurse consultant in a Lead Clinician meeting, Colorectal and Stoma nurses’ meeting and the Ward Manager meeting.
The second meeting was much more successful. The nurse consultant gave the response to the Group’s concerns, feedback from the Cancer Peer Review, feedback from a colorectal cancer awareness campaign, and results from the Patient Satisfaction questionnaire.
Outcomes
Booking follow up appointments can now be made through the colorectal
nurses directly with the administrator whilst the patient is being seen
in clinic. The outpatients pharmacy will open at lunchtime and will
trial continuous opening to reduce delays.
- Options for reducing waits for blood tests are being discussed, such as
- patients who live near the hospital may if they prefer come back for tests at quieter times
- outpatient staff could take blood (this would need negotiation and training)
“After a somewhat quiet start, everyone had a chance to talk about their operation and how easy it was to talk about one’s self, we soon got to know what affect our experience had upon us. I think it was the third meeting when the group started to put forward suggestions to improve the care of patients after the operation, and once started they haven’t stopped, indeed at the last meeting they were putting forward suggestions for the Doctors to consider”. User Group member
The User Group’s views were also sought on
- a list of questions about colonoscopy for a research project for junior doctors who have to explain the procedure to patients
- a draft of the new patient self-assessment form for comment
- a new clinic letter describing suppository self-administration
- a discharge check-list
- how the system of notes coming into the consultation room could be changed to lessen interruption.
The group now has regular topic speakers. A volunteer from the group
also took part in the St. Mary’s CRC study day.
Future Group activities
- continue to work through the pathway of care
- comment on a new chemotherapy video
- discuss an alternative method of follow up care called diary-led follow up
- represent users by working with the Cancer Services Collaborative
- look at a pathway for patients undergoing bowel resection.
Staff time and commitment
User Groups are a valuable resource, but they are labour intensive,
for group members and for staff. It takes considerable time and commitment
from both of them. SMH staff write up minutes prepare agendas, arrange
the venue, refreshments and speakers. Follow-up action is predominantly
done by the nurse consultant. She estimates that it can take up to 10%
of her time. Collaboration is needed from the whole department if the
Group suggestions are to be taken seriously, and the SMH venture is
very much a joint effort.
View in-depth
report of St. Mary’s Colorectal Cancer Services patient user group
|
|
|
|
