North Hampshire Prostate Cancer Support Group
31 January 2019 – Group Meeting Report
There were 52 members present, including 2 new members.
Ask the Audience
The theme for the meeting was ‘Ask the Audience’. A detailed set of notes was taken recording members input. This report only deals with the highlights. It identifies the action that the committee has taken so far. (shown in italics) If any member wishes to see the detailed record, the Secretary would be pleased to email them a copy.
A comprehensive exercise obtaining feedback from members had been undertaken in late 2017. The Committee were keen to take stock of current membership views on a number of key issues concerning the group. The main aim of the session was to see whether members’ expectations were being met and to identify if improvements might be made, and, if so, how.
A national survey on cancer services had recently been published. In a number of areas related to prostate cancer, the Hampshire Hospital NHS Trust had underperformed. The hospital was keen to have input from the group. Therefore comments on patients’ experiences were also invited during the session.
Input came both from the floor as well as written comments. Members seemed to welcome the opportunity of putting forward their views. There was a lively discussion on many points. Not surprisingly, there were divergent views on some matters.
The lack of a Clinical Liaison Nurse is clearly a major concern. Delays, and last minute changes in appointments, have also affected some members. Lack of time to discuss treatments and their side effects with specialist consultants was also indentified. Experiences of members varied considerably.
The committee has:
- forwarded the group’s feedback to the hospital in an effort to obtain a clear statement of future intentions in regard to the Clinical Liaison Officer role;
- asked for confirmation of the provisional arrangement for Dan Parr (Deputy Operations Manager for Cancer Services, Hampshire Hospitals) to address the group at the next meeting on 28 February.
Organisation of Group Meetings
The feedback was generally positive. Members agreed that the meetings provided the right opportunities for mutual support. Improvements that were identified, and will be implemented for the next meeting, include:
- a sheet will be available on each table explaining the ‘dot code’ (how to identify what treatments members have had);
- the opening administrative arrangements etc will be keep as short as possible with clearer identification of what is to happen during the meeting;
- a sheet identifying sources of information on websites (e.g. PCUK) will be provided on tables.
There was concern that the ‘ambassador’ system was not operating as smoothly as it could. Ambassadors meet and greet new members. Amongst other things, they cover the aims of the group and also seek to discover what advice, if any, a new member might be seeking. It is always made clear that no ambassador or member is in a position to provide medical advice.
The committee has:
- identified additional ambassadors;
- will amend name badges so that ambassadors can be easily identified;
- will issue a detailed ‘job description’ to ‘ambassadors’.
A number of members thought that the programme needed greater prominence and more advance warning with details of what speakers are going to cover.
The committee is currently reviewing the 2019 programme and will publish same both by email and on the website as soon as possible.
Social Events /Exercise Programme
There were a number of suggestions for additions to the social programme. Feedback indicated that this programme needed to be circulated and/or placed on the website in addition to the reminders announced at meetings.
The committee will;
- consider and report back on the suggested additions to the social (and exercise) programmes;
- give better advance warning of social events.
Ken WoolgarFebruary 2019