One of our ‘Organisation’ members – Graham Fulford of the Graham Fulford Charitable Trust – very kindly sponsored a mid-term workshop with the aim of consolidating the very positive response to the Inaugural Conference in April 2009, and moving the Federation forward. This was held on 16th October 2008 in Leamington Spa.
The workshop was themed ‘Promoting Patient Power’ and was very much geared to getting the thoughts and views of members. It was attended by over 40 people, representing 21 member organisations.
The programme had two themes. One was to encourage discussion amongst delegates to progress ideas about what the Federation should seek to do, and how it should be organised and funded to achieve its aims. The other, in order to attract delegates, was a set of presentations on hot topics including PSA Testing and prostate cancer research priorities.
In the morning workshop session, a number of key issues were prioritised under the following headings:
Awareness, early detection and reduction in death-rate
PCSF public profile and recruitment
PCSF management
Services to members
In the afternoon, delegates were treated to two presentations on prostate cancer issues. In the first, Mr David Baxter-Smith, Consultant Urologist from Kidderminster, gave a fascinating and informative presentation on how, supported by the Graham Fulford Charitable Trust, he has conducted a series of increasingly popular PSA Testing sessions throughout the country. He gave details of how these are set up, and the typical outcomes.
The final session was entitled “Getting patients’ voices heard in setting priorities for Prostate Cancer Research”. Sandy Tyndale-Biscoe described an exercise is that is under way, with the Prostate Cancer Research Foundation (PCRF), to get a consensus view from patients, clinicians and researchers on the key priorities for research. This should complete some time later this year.
