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HOME | Self Help Group - Introduction
Self Help Group is a patient support group.
Hereditary colorectal cancer syndromes impose profound psychosocial burdens on affected families. Mutual support among affected individuals is an effective way to facilitate adjustment to their conditions. Therefore, two patient support groups were established for families suffering from either Familial Adenomatous Polyposis (FAP) or Hereditary Non-Polyposis Colorectal Cancer (HNPCC). The FAP self-help group was established in September 1997 and the HNPCC self-help group was established in November 1998.
The aims of both self-help groups are:
1. To provide an opportunity for the members to know each other, express their feelings, share their experience, and support each other;
2. To facilitate education and counselling of the members;
3. To maintain contact and communication with the members;
4. To provide a comfortable and relaxing environment for the members to ask questions freely.
Regular meetings are organised by group members for education, experience sharing, mutual support and social interaction. Families of the two conditions are welcome to join the respective Self Help Group.
Members of both self-help groups throughout the years actively helped and supported the activities of the Registry, with many become volunteer workers of Queen Mary Hospital. They also actively participate in the the annual “7th Annual Stride for a Cure” organised by the Hong Kong Cancer Fund. Furthermore, members also help in the publishing of the Registry newsletters.
The Registry treasures the involvement of self-help group members with the Registry’s activities. Such involvement is not only helpful for the Registry itself, but is also beneficial to the well being of individual members.
Click here for further detailed information on the FAP Group
Click here for further detailed information on the HNPCC Group
Activities in 2004
1. A talk titled “Hereditary Colorectal Cancer” was delivered by Dr Judy Ho at the Hong Kong Cancer Link on 15 May 2004. More than 50 colorectal cancer patients and their relatives attended the talk.
2. A talk titled “Colorectal Cancer – Environmental & Hereditary Factors” was delivered by Dr Judy Ho at the Lecture Theatre of Hospital Authority Building on 28 August 2004. It was organized by the Hong Kong Anti-Cancer Society and was open to the general public. More than 300 individuals attended the talk.
3. The FAP Self-help Group Meeting 2004 was held on 14 August 2004 (Saturday) at K2 Doctors’ Common Room of Queen Mary Hospital. A total of 39 FAP family members attended the meeting. New FAP families were introduced. A talk titled “Preoperative and postoperative nutrition and health care for FAP individuals” was delivered by Ms. Ivy Leung who is a registered dietician. The talk was very informative with valuable information. The content of this talk was included in the September issue of our Newsletter.
4. The Registry has published two newsletters in 2004. For each issue, more than 600 copies were delivered to Registry families, related doctors and organizations with the help of volunteers from the FAP Self-help Group. These two newsletters featured many touching articles from our recruited family members. The newsletters served to improve communication among recruited members themselves as well as between recruited members and the professionals. The newsletters have also been uploaded onto the Registry website.
Activities Organised by the Self-Help Groups 2004
Several activities were organized by the two self-help groups in 2004:
1. The FAP Self-help Group Outing was held on 25 April 2004 (Sunday) at Lamma Island. A total of 25 FAP family members participated in this activity. We hiked from Yung Shue Wan to Sok Kwu Wan. This activity was well received by all the participants because they could take time out for relaxing and exercising in the country park. It also provided an opportunity for Registry members to share with each other.
2. The 5th meeting of the 3rd FAP Executive Committee was held on 6 June 2004 at K1 Canteen of Queen Mary Hospital. During the meeting, office-bearers of the committee were decided and plan for the next Self-help Group meeting was discussed.
3. Another FAP Self-help Group Meeting was held on 14 August 2004 at K2 Doctors’ Common Room of Queen Mary Hospital. A total of 39 FAP family members attended the meeting. New FAP families were introduced. A talk titled “Preoperative and postoperative nutrition and health care for FAP individuals” was delivered by Ms. Ivy Leung, a registered dietician.
4. An out-door barbeque gathering was held on 31 October 2004 at Clear Water Bay Country Park. A total of 34 FAP family members participated in this activity.
Other Activities in 2004
Infection Control Training
Registry volunteers were invited to attend an “Infection Control Training” which was organized by the Patient Relations Centre in Queen Mary Hospital. Ms. Emily Chan, Ms. Bonnie Lam and some of our FAP Self-help Group volunteers attended the training session on 21 February 2004. Video on infection control and prevention as well as demonstration on the use of personal protection equipment (PPE) were included in the training. Certificates were given to participants upon completion of the course.
Mindfulness Based Stress Reduction Program
In collaboration with the Cancer Center of Queen Mary Hospital, the Registry has organised a trial run of a workshop known as “Mindfulness Based Stress Reduction Program”. This workshop was held between 18 June and 18 July 2004 and ran for a total of 6 consecutive evenings and one whole day training. Through various activities such as practice in mindfulness based stress reduction, yoga transformation, group discussion, sharing and daily homework, attendees enjoyed a valuable experience in learning techniques on relaxation, and how to work under pressure and hence refreshing the inner part of themselves. With the positive feedback from attendees towards the workshop, Registry will review and organize more workshops of similar nature in future.
9th Annual Stride for a Cure
Dr. ST Yuen, Dr. J Ho, Ms. Emily Chan, laboratory staff and 58 of the Registry’s recruited members and their relatives participated in the “Hong Kong Cancer Fund 9th Annual Stride for a Cure” on 14 November 2004. All participants completed their selected routes. Once again, the Registry secured the largest amount of donation among the hospital groups and won the Hospital Cup for a third time.
Volunteer Recognition Day 2004
The Registry was invited to attend the Volunteer Recognition Day 2004 on 11 December 2004 at the Underground Lecture Theatre of Queen Mary Hospital. Ms. Emily Chan and some volunteers attended this activity. The Registry was presented a plaque in recognition of its continuous support for individuals and families with hereditary colorectal cancer.
Seminar of QMH Patient Co-op 2004
The Registry was invited to attend the seminar of Patient Co-op 2004 on 11 December at the Cancer Centre of Queen Mary Hospital. Ms. Emily Chan attended the seminar on behalf of the Registry. The seminar’s aim was to gather opinions of various patient groups on hospital affairs and to build up mutual understanding and better relationship with these groups.
Influenza Prevention and Vaccination for Volunteers in Queen Mary Hospital
Registry volunteers were invited to attend the briefing sessions for influenza prevention in November & December 2004 at Queen Mary Hospital. Some of them also received influenza vaccination on the same occasion.
Registry Website (http://www.generations.hk.com)
The Chinese version of the Registry’s webpage is now fully functional. The information of the website is being constantly updated. We hope that the website can serve as an information resource for the general public, particularly among the Chinese speaking community throughout the world.
Activities in 2003
Many of the activities planned for 2003 have been either delayed or cancelled due to the SARS happening in Hong Kong. Below is a summary of the activities that were conducted before and after SARS.
1. Ms Sharon Lam together with 3 well-trained volunteers of the Kadoorie Farm and Botanic Garden were invited to deliver a health talk on diet and organic food on 22nd March 2003 at Lecture Theatre 2 of the Faculty of Medicine Building. A total of 55 FAP and HNPCC family members attended this talk. Topics discussed included healthy life and organic food, organic farming, ways to recognize the common organic logos in Hong Kong, tips on organic cooking, etc. The information was well received and the attendees had a chance to taste cakes and soya milk made from organic material. The Registry presented Certificates of Appreciation to the speakers and they were invited to write articles in our newsletters to share their experience in organic food.
2. A joint workshop with the Cancer Centre in Queen Mary Hospital named “The Art Therapy” was held on 25 Oct 03 at K2 Doctor’s Common Room. A total of 12 FAP and HNPCC Registry members together with Dr. S.T. Yuen, Dr. Judy Ho and Ms Emily Chan attended this workshop. Using various activities including meditation, group drawings, group discussions and sharing, Ms Josephine Cheng led attendees through a valuable experience in personal relaxation. Members learned about the techniques on relaxation and experienced the importance of mutual support. The feedbacks from the attendees were very positive towards the workshop. Being a trial workshop, the Registry will review its usefulness and will likely organize more of these similar workshops for our clients in the future.
3. The team led by Dr. S.T. Yuen and Dr. S.Y. Leung has investigated into the importance of the new oncogene BRAF in colorectal cancer and its precursors. Its relationship with hereditary colorectal cancer was also investigated. The results have been published in two papers in Cancer Research, an internationally renowned journal in cancer research. The team also presented these findings in the Annual Meeting of the American Association for Cancer Research (AACR) held in Washington in 2003. Some of the recent data will be presented in the Annual Meeting of AACR to be held in Orlando in March 2004.
4. Dr. Judy Ho was invited to give a talk titled “Endoscopic management in hereditary colorectal cancer syndrome” to the Hong Kong Society of Endoscopy Nurses on 21st February, 2003
5. Dr. Judy Ho was invited to give a talk titled “Management of families with hereditary colorectal cancer” at the “Medical Education Programme” of the Hong Kong Baptist Hospital Surgical Group on 2nd May 2003.
6. Dr. Judy Ho was invited to give two talks titled “Young Colorectal cancer patients in Hong Kong: genetic epidemiology and management implications” and “FAP in Hong Kong: genotype, phenotype and clinical management” at the Hong Kong Colorectal Symposium organised by the Department of Surgery, University of Hong Kong on 9-10 October 2003.
7. Dr. Judy Ho was invited to give a talk titled “Hereditary colorectal cancer screening – role of a regional registry” at the Annual Scientific Meeting of the Hong Kong Society for Coloproctology on 13th December 2003.
8. The Registry has published two Newsletters in 2003. The Newsletters serves to improve communication among our clients. These were distributed to Registry families, liaison doctors and organizations. The newsletters have also been posted on the Registry’s website (http://www.generations.hk.com).
Activities in 2002
A joint outing for FAP and HNPCC families was held on 25 November 2001 at the Kadoorie Farm and Botanic Garden. Members visited the organic farms and bought fresh organic vegetables. We also liaised with the Dietician of the Kadoorie Farm for a demonstration on organic food and health food cooking. A total of 37 persons participated. They all enjoyed the outing very much and hoped that the Registry would organize more outdoor activities in the future.
A BBQ gathering of FAP Self-help Group was held on 24 March 2002 at Waterfall Bay Park. A total of 14 members enjoyed this activity. FAP members also had a ‘Drink Tea’ gathering on the same day. There was much sharing between the members during these activities.
The 1st FAP committee Meeting, chaired by a chairlady elected by FAP members, was held on 21 June 2002 at 6:00 pm at K415. Our Coordinator Ms Emily Chan attended this meeting. Matters discussed included the upcoming activities of this self-help group in the latter half of 2002.
The FAP Self-help Group Meeting was held on 31 August 2002. A total of 36 members attended the meeting. New FAP families were introduced. Dr Ho delivered a talk titled “Risk of Colorectal Cancer in FAP Teenagers”. The content of this talk would be included in March 2003 issue of Newsletter.
Activities in 2001
In the year 2001, a FAP Self-help Group Meeting was held on 25 August 2001 at K2 Doctors’ Common Room. Dr. Ho introduced Ms Emily Chan to all the FAP members. Election of the 2nd FAP Self-Help Group Committee was also held at this meeting. After the election, Dr Ho delivered a talk to all members on statistics on FAP families recruited by the Registry.
A tailor-made education talk and genetic counseling session for Mr. Ma Chi Fook and his family was held on 8 September 2001 at K415. Totally 18 family members attended. During the talk, Dr Judy Ho delivered a lecture on the nature of the disease Familial Adenomatous Polyposis, its cure and prevention. The slide-show presentation was very informative and useful to this family. Attendees were recommended to pass on the messages to their family members.
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