Learning Log APPENDIX 6 Forming the Partnership Group One of the stated aims for holding the Have Your Say day was to recruit users to a User Partnership Group. On the evaluation sheets we had 8 people who expressed an interest in being involved in developing services in the form of a group. When we wrote out with the Executive Summary and stating when the first meeting would be we had responses from more people. We spent the first meeting explaining what the purpose of the group would be and agreeing our Statement of Purpose. The Lead Nurse had contacted CSC National Manager for User Involvement and had obtained information from her. We talked through the action plan and what progress had been made against it. Some of the people who attended saw it as an extension of the Have Your Say day and wanted to talk again about their experiences. The Group wanted to meet quarterly and we set meetings for the whole year. The Lead Nurse left and there was a six month gap before the replacement started. The 2 of us left organizing the group were struggling for what to put on the agenda. Reflecting back on what we did I realise we had not planned what we were going to do with the Group. We had not looked beyond creating the Group. We were pleased to have formed a Group with over twelve members. Our Strategy had been to create a group and involve people in service delivery. We had not taken on board the need for training and putting the users in the driving seat. We continued setting the agenda and asking them questions and to comment on information but it was not true partnership working. Having been involved in the locality group which followed a strategy for developing the group having recruited members from a user event in the same way that we did I have seen the differences. Our Strategy stopped at the creation of the group the network’s strategy was only just started. Members of the Group were told that they needed to hold the key posts. At the first meeting it took some persuasion for someone to take the role of Chair. CancerVoices training which was two full days a month apart was organized for users and health care professionals. I attended the training. This enabled the group to bond and users gained confidence in tackling issues and dealing with health care professionals. The health care professionals gained an understanding on how to involve users. During the training areas of concern were highlighted and these were prioritized to form areas of work. This Group meets monthly and now has a user as vice chair, note taker and treasurer. One of the key pieces of learning from the training was the ice breaker – people introduce themselves by their first name and a hobby. This creates a friendly environment because there are usually some humorous remarks which relax people. At the first meeting of the partnership group the lead nurse chairing asked the group to talk to the person next to them about what they would do if they won the lottery that evening. This was a bad topic Learning Log APPENDIX 6 to choose because they all came back with comments such as money not being important without good health. The meeting started on a negative note. We have taken this learning on board in PUG and have got the users to identify areas of work to take forward which they must drive. The members of our group who are also members of the network group and who have undergone the training are very pro-active and take projects forward. We must be careful not to overload these people but encourage them to motivate others. There are other members who seem only interested in attending the quarterly meetings but do not want to take forward any work streams. Although these people are helpful at commenting on patient literature and questionnaires and always do so promptly and we would not want to lose them. Whether they would be different if motivated correctly at the start cannot be known. When interviewed for Peer Review they demonstrated great commitment to the Trust and were happy to be involved. Some of them did state that they were part of the Group because they wanted to give something back to the Hospital. I was concerned that the meetings need to be more frequent than quarterly although this would be addressed if there were sub group meetings in between. Most of the Health Care Professionals do not want to work Saturday but this is the most convenient day for the users some of whom work during the week. Learning from our mistakes in developing the PUG in the beginning we feel we are now on the right track but need more new members who will be actively involved from the start. We must ensure that the Group is user driven with them setting the agenda. The advantage that our Group has over the locality groups is that there is an awareness among the HCPs of how things are structured and done within the Trust and linking to the Centre which network facilitators would not have. We are aware of what can be tackled. Bigger issues can be linked back into the locality group and up to network level which gives a more powerful voice.