History of the Prostate Cancer Action Group (S.A.) Inc. 1997 - 2013 Acknowledgements In compiling the History of the Prostate Cancer Action Group (S.A.) Inc I always felt one of the more difficult parts would be to satisfactorily list the acknowledgements. Whilst members of the group over the years have displayed great initiatives in promoting prostate cancer awareness, there has also been a tremendous level of support from various areas. First I wish to acknowledge the Anti-Cancer Foundation (ACF), now Cancer Council SA (CCSA). As mentioned during the History, the group would never been formed without their initiative and in particular their project officer Jane Frankham. CCSA have continued to allow our group to meet on their premises to this day, for which we are extremely grateful. The group has been affiliated with Prostate Cancer Foundation of Australia (PCFA) since 2001 and is indebted to them for both funding and general support. Without their backing it would not have been possible to conduct many of the events in which we have participated. The medical profession have been strong supporters of our group. In particular we owe a great deal to the various Urologists who have been key speakers at numerous public awareness presentations. Whilst I hesitate to mention names because all were greatly appreciated, I need to specifically acknowledge the following: Dr Peter Sutherland, a strong supporter of our group for many years. Apart from speaking at a number of awareness evenings, he has submitted testimonials on our behalf. His willingness to contribute a forward to this publication is greatly appreciated. The other Urologists I should mention for speaking on several occasions are - Dr Kim Pese, Professor Villis Marshall and Dr James Aspinall. At numerous events, our group has received great assistance from the staff of various health centres, particularly in rural areas. The media (again predominately in rural areas) have been very generous in their support. In many of our activities, community groups have provided great assistance. The Masonic Lodge and service clubs such Rotary and Lions have often sponsored activities or supported us in some way. Finally I would like to acknowledge the assistance of Group members in compiling the History. Particularly two original members, Dean Wall and Ray Power; to Ian Fisk for improving the format, his comments on the website and inserting photos from his very extensive library. Thanks also to Pam Fisk for proof reading. Thanks to Karyn Foster for her editing suggestions. I regret to say there are almost certainly some persons or organisations that I have overlooked. If so, please accept my apologies for the omission as our group is very grateful for any assistance received over the years. Jeff Roberts 2 Forward Dr Peter Sutherland The Prostate Cancer Action Group was borne out of men and their partners yearning for help and information. All of the men involved have had prostate cancer, some have died from the disease. They all know about this disease and how it can change productive and happy lives. They were keen to tell their stories so that others would learn. Members of this Action Group have travelled all over the State and given many hours of toil for free. Community meetings only occur with significant effort. The Group has worked closely with people providing support and advice so that sufferers and their partners can learn about the many differing treatment options. These options are often confusing and complex. Speaking in plain English has helped many men attain a clear understanding, helping them to change to the treatment suiting them best. These men have rolled up their sleeves and gone out into the community organising meetings and attending open days providing support, help and advice to many men confused about what they should do. They have also made many aware of the silent, dark shadows of cancer lurking inside them. Their hard work has saved many lives and I strongly applaud the members of this group. 3 History of the Prostate Cancer Action Group The Prostate Cancer Action Group (S.A.) Inc. (abbreviated to PCAG or the Group) was formed in early 1997, originally under the name of the Prostate Cancer Consumer Committee. Although the majority of members were also part of a normal prostate cancer Support Group, the aim of the Group was to develop an involvement in a variety of activities which would spread prostate cancer awareness throughout the State. It is interesting to reflect that PCFA is the peak body for prostate cancer in Australia, currently with approximately 150 affiliated support groups but PCAG still remains one of the very few groups that carry out regular awareness activities. Our formula for conducting a public prostate cancer awareness presentation was, for many years, used by PCFA as a model for other groups. The following, in chronological order, are details of the many and varied involvements by group members. Although only having small numbers, these details show how with dedication and commitment the Group has earned the great respect of the many organisations they have become associated with, including medical and health bodies. At the time the Group was formed there was very little information available to men and families facing a diagnosis of prostate cancer. In many cases, decisions were made regarding the various treatments with minimal assistance. It was with this in mind that in late 1996 a concerned number of people met at the ACF, now CCSA premises. Those who attended were Jane Frankham (ACF), Gary and Margaret Bowes, Gerry and Cynthia McCreanor. As a result and following further meetings, a group was formed in early 1997. The ACF appointed Jane Frankham, a project officer, to work with health professionals and men with prostate cancer and she played a vital role in the formation of the Group. Gary Bowes - Original Chairman of the Group A list of original members (as can best be ascertained) is as follows: Gary and Margaret Bowes Graham Lyons Ian and Barbara Mattiske Ray and Helen Power Dean Wall Other members who joined in early days were: Derrick and Marion Rich Kenneth Ashley Jeff and Theban Roberts Del Wall - attended some early meetings Trevor and Coralie Hunt Rosemary Petersen Sue Miller (Abbott Australasia Pty Ltd representative) Gary & Margaret Bowes with Jane Frankham The Early Years The Group was very active from its early days. Rural programs - public awareness presentations on prostate cancer issues involving medical professionals as key speakers were held including events at Clare, Moonta and Burra. Information sessions and speaking engagements in metropolitan and rural areas, attendance at various health seminars and forums were further examples. Prostate Cancer Information Programs One of the key activities devised by the ACF was the planning, implementation and evaluation of a series of Prostate Cancer Information Programs to be held in metropolitan and rural South Australia. These were once weekly sessions over a six week period for men and families where a range of guest presenters spoke about the various aspects of prostate cancer. Each week had a different topic eg, “Choices of Treatment”. Members of the Group supported these courses, usually by providing men to talk about their individual experience with prostate cancer, and a Chairman for each session. These courses proved to be very successful and were held during the years 1997/2. 4 ACF Training Sessions At that time the ACF did a fantastic job (through Jane Frankham) in arranging a number of training seminars which gave people the opportunity to receive basic information on prostate cancer issues. Also, training on how to speak publicly was included. Some examples of these were - a phone in training session relating to a proposed Prostate Cancer Call-In and a two day Peer Support Prostate Cancer Training Program. These seminars nearly always included key medical professionals. One that comes to mind was Dr Alan Stapleton. Members of the PCAG attended these sessions regularly and consequently received an excellent grounding on prostate cancer issues. Year 2000 In January 2000 the members decided the Group needed a more positive title and the name was changed to Prostate Cancer Action Group (PCAG). Stage Play - “For Better For Worse” In early 2000 the Group became very involved in promoting a stage comedy called “For Better For Worse”. Written by an established playwright and actor, Alan Hopgood, the play was based on his own prostate experience. The play toured Adelaide and rural areas of South Australia with great success (watched by over 2,000 people) and Group members played a big part in the promotion. Rural areas visited were the Barossa, Jamestown, Mount Barker, Mount Gambier, Murray Bridge, Renmark and Victor Harbor. National Prostate Cancer Call-In, Lions Website On 19th June 2000 the initial Prostate Cancer Call-In was held in conjunction with the launch of the Lions Australian Prostate Cancer Website. The website (www.prostatehealth.org.au) was designed to meet the needs of Australian men and their families and has proved a very popular site to this day. The Call-In was arranged by the ACF and four members of the Group (Gary Bowes, Dean Wall, Trevor Hunt and Jeff Roberts) attended. They were available to speak on the phone if required as well as packing the requested resources. Unfortunately after many successful years the Call-In is no longer held in this State. In all, the year 2000 was a very busy one for the Group with some active examples of further involvements: Members spoke to four multicultural groups, Probus, Lions and Kiwanis groups, Men’s health expo’s at Murray Bridge, Mannum, Clare and Wallaroo. Formation of the North East and Riverland Support Groups A series of talks to medical students.