To make recommendations to NCAT Peer Review Team on the recruitment, support and length of appointment of User Peer Reviewers Team: Sian, Millie, Collin, Jaff & Tim

Actions Survey current users Review current documentation –NCPR Handbook –Training slides/notes

User/Patient Reviewer person specification Experience “It is essential that user/patient reviewer should have first hand experience of cancer services Recommend: Replacing MDT with Team being reviewed Add Representing the voice of the cancer patient To section Knowledge, understanding and reasonable commitment to:

Definition of role and purpose Role and purpose of the user/patient reviewer is to use their experience, knowledge and training to act as the voice of cancer patients and carers, ensuring that every patient is receiving the best and most appropriate care, that there is equality of treatment (both physical and holistically) throughout the geographically area being reviewed.

Survey Questions Remain on Database Approx no; of reviews undertaken (I/V & E/V) over 2 years Support- received and would have liked Term of Office Current cancer involvement In your personal opinion, is it necessary for a user reviewer to have a cancer experience as a patient or carer?

Responses 228 sent 123 replies 14 asking to be removed from list 2 notifications of member passing away (There are plans in place to phone non respondents.)

Reviews done Total number of internal & external reviews undertaken over the 2 year period ranged for zero to 49 External validations ranged from zero to 16

Reviewers per Network This ranges from several Networks with only 1 reviewer to Greater Midlands Cancer Network with 8. Total North -29 Central -29 London -21 South -21 Based on 260 reviewing days this is 2.4 per reviewer.

Current Cancer Involvement 4 people have no current cancer involvement. 1 has done no reviews in the last two years 1 did not respond to the question 1 has done 7 (internal & external over 2yrs) 1has done 16 (internal & external over 2yrs)

Training/support received The feedback showed a large variation from before training was introduced to 2 by 2 day courses, 2 day course, 1.5 day course a Macmillan course and a network run course. Positive comments regarding support received from either or both local network and peer review team. “the Review Team professionals were always extremely helpful” “I feel I got the support I needed and still continue to feel supported.”

Training/Support suggestions “more info on measures and copies of the measure” “Possible shadowing a "buddy". “I was a little unsure that the questions I had were relevant so a little more reassurance would have been nice. Perhaps even on a user reps first visit having 2 of them so they can support each other. The other reviewers, even if it’s their first time, have a much deeper understanding of the process.” “A little more guidance on what to look at that is not obvious in the measures”

Support The general consensus of Users surveyed would want training to include: Run through of paperwork, explaining measurers and evidence required Practise session Timetable of a review day Buddy The current training meets these requirements with the exceptions of a buddying scheme.

Term of Office N = 76 Y=19 with anything from 2 – 10 years or “as long as fit for purpose” ‘Term of office:’ Three is an arbitrary figure randomly chosen with no scientific basis. I would suggest the term only needs to be limited to allow a regular mutual review of performance. If the reviewer has the necessary appropriately informed, contemporaneous skills, is not over burdened and wishes to continue then they should. “I do have patients/carers within my organisation who would liked to become peer reviewers / internal validators and hope that recruitment will commence to enable people with fresher experiences to participate in the future.”

Should a reviewer have experience of cancer? Yes- 80N-15 “user/carer reviewers should have experience of cancer. We expect that health professional reviewers work within the cancer sector for their experience and knowledge.” “Preconceived fears about cancer generally could have an unnecessarily negative effect on reviews and processes and a more realistic perspective will probably come from those who have been through the “mill” and thus speak from experience. Whilst they could be negative or positive based on outcomes they will generally be a more pragmatic response and less likely to be clouded by a lack of knowledge”

Recommendations There should be a clear definition of a user reviewers role and purpose. The person specification should include:- Representing the voice of the cancer patient and carer.

Number of user reviewers There are sufficient reviewers on the current database. The list should be checked annually. User reviewers should have an experience of cancer as either patient or carer.

Support recommendations We would recommend the introduction of a telephone buddying system. Refresher training is considered. More support material is made available including, Easy to read handouts with hints and tips on asking open questions,etc., tips from experienced reviewers on how to prepare efficiently That there is an Official ‘feedback ‘ system, with clearly defined exit routes for reviewers whose performance is considered of insufficient standard. Users expectations should be managed, including better communication of changes, clear notice of likely number of reviews required, notice when not selected for a review, clear protocols when cancelling a review.

Term of Office A term of office is not required provided ‘users’ are fit for purpose. To be fit for service there should be a clearly defined path to follow should a reviewers performance be less than expected whereby they are given the information and opportunity to improve. It would also be recommended that a recent cancer experience is not necessary provided the reviewer is actively involved in cancer via network, support, locality user group etc.,

Caveat that this is all based on current user peer reviewers and the professional reviewers should be surveyed. Costs associated could be considered for a further piece of work

Questions