Prostate Cancer Awareness Day Summary and Brief Analysis Why the Event? The inspiration behind the staging of this event came out of a heart to heart conversation between the late Caswell Thompson and one of the committee member, at a time when Caswell knew he was dying from the cancer. After they talked, raising awareness was the agreement. Hence, the event. However, it was also the prevailing situation of the high incidence of prostate cancer and deaths in the immediately black community, and that no major event had been held to raise awareness in this area of Bristol. This was of particular concern because one in four (25%) black men will develop prostate cancer, which is high when compared with other ethnic groups, allied to the fact that black men are considered an hard to reach group. Sponsors and Venue The event was organized by, The Prostate Awareness Committee Friends of Caswell Thompson (deceased), and sponsored by Healthwatch Bristol, Prostate cancer UK, and local branches of the Church of God of Prophecy. Healthwatch and Prostate cancer UK both had stands. The venue was 2 Tudor Road, Easton, Bristol BS5 6BW. Proceedings began at 10:00am with registration, tea and coffee and the viewing of relevant literature supplied by Prostate Cancer UK. This approach was to allow the attendees to relax and give the opportunity to speak with other attendees before the official start. One hundred and nineteen people were registered. The literature from the Prostate Cancer UK stand proved very popular, and rapidly ran out of material. Healthwatch also had a stand with very useful material on health. 1
Workshops The workshops were staged before the main speaker, in order to give attendees the opportunity to express to their concerns, learn, share their experience, and raise questions to be fed back to the main speaker. Cate Abbey, Clinical Nurse Specialist Uro-Oncology at Southmead Hospital ran the women s workshop, and Dr Lloyd Grant, GP, ran the men s, assisted by Trevor Rogers. Usually, prostate cancer meetings are men only affairs. It was decided from the outset to include a workshop for women because it was felt their input would be of great value in the effort to spread the message, and, most importantly, highlight the fact that prostate cancer affects men and women alike, albeit differently - physically and emotionally. Some women, for example, had the opportunity share how they nursed their husbands following radical prostatectomy. Feedback from the workshops was very positive. Main Speaker Suresh Rambaran, Consultant Male Cancer Information Nurse, was the main speaker. Suresh has over 30 years of experience in cancer nursing, and extensive experience in cancer information through his work with the NHS, Cancer Backup, Cancerlink, Prostate Cancer UK, Macmillan and Orchid. Throughout his career he worked tirelessly helping hospitals and other health facilities improve their service provisions, making them culturally appropriate and sensitive to the needs of the patients religions, customs and culture. In 2013 he was awarded a Queen s Medal Diamond Jubilee award for his work and contribution within the NHS and voluntary/charity sector. His area of specialisation being prostate cancer. Suresh was the UK s first Black and Ethnic Minority to be appointed as a Cancer Information Specialist (CIS). He has played a vital role providing specialist nurse support at Male Cancer Roadshows across the UK. 2
The presentation was thorough, covering all aspects of the disease, as well as the treatment options available. Some of the topics covered were: 1. Where is the prostate and what does it do? 2. What can go wrong? 3. Prostatitis 4. Prostate cancer 5. Gleason score 6. Active surveillance 7. Stages of diagnosis influence treatment options 8. Diagnostic pathway 9. Multi-discipline team 10. Signs and symptoms of prostate cancer 11. Risk factors (Ethnicity) and 12. Ethnicity- famous black men now living with the cancer. There was very good interaction between Suresh and the audience. One-to-one was made available during the intervals with Suresh, Trevor, Cate and Dr Grant. Personal testimonies Trevors Rogers and Errol Campbell gave their testimonies, but from different perspectives. What Next? There was agreement that events such as this should be staged at regular intervals in collaboration with the local authority and other agencies. There were definite aspirations that were discussed/raised and would be pursued: 1. Pursue a meeting with Viv Harrison, Head of Public Health, Bristol City Council; 2. raise a petition, to try and effect changes in local government policy, as it relates to the testing of black men; 3. support men who have not had a PSA test and find it difficult; 3
4. specific support group for women; and 5. set up a specific prostate cancer forum for black men. Feedback Just over half (56.3%) of attendees completed a feedback form. In order for the event to be considered a success, it would need positive action on the part of the attendees, in particular how those who completed the feedback sheet addressed two vital questions: Why did you decide to attend this event today? Partner asked me to attend I have it. To know what prostate cancer was all about. Because my cousin was recently diagnosed and I care for my family very much. To learn more. My father has had prostate cancer. Family member asked me to attend. Wanted as much as possible to know more about in order to help black men especially. Know too many black men personally with cancer or died. Because so many people in my circle have died from cancer in the last few years. What are you likely to do now as a result of today s talk? 1. Speak to my GP (41) 2. Speak to my partner (21) 3. Speak to my father or brother (19) 4. Speak to a friend or other family member (24) 5. Nothing at the moment (3) 4
6. Speak to our Specialist Nurses (7, at the event) It is hoped that those who did not completed the form will take positive action. Feedback Comments A selection of comments from the feedback form: Do more events like this. This was a fantastic event. I am very glad that I came because I now know a lot more that I did. The specifics was very good and speak so everyone could understand. Because my uncle and father have died from the cancer. It is really nice to have an open discussion about this matter, as it s a treated as taboo!! Thank for this informative conference. It was interesting. I learn lot about prostate cancer. A very good and informative day on a professional but friendly, intimate level helpful to listen and share in experience of others and to receive qualified information. The ambition of the committee was to save a life by staging the event and empowering men to have themselves checked. Feedback post the event, confirmed that was achieved. Finance A donation of 147.75 was received from attendees towards staging the event. Committee members: Errol Thompson Mrs Faye Williams Valentine Williams Noel Hendricks 5
Kervon Grant (Healthwatch Bristol) Dr Lloyd Grant Raymond Veira Errol Campbell (Chair) 6