ANNUAL REPORT FY

Transcription

1 ANNUAL REPORT FY /30/2014 Abstract The year saw various talks, activities and seminars organized to create awareness about Crohn s disease and Ulcerative colitis amongst the public, to educate patients and their family members about these illnesses. Tremendous support from Gastroenterologists, Pharmacists, Nurses, Medical Social Workers, Pharmaceutical Companies, Media and Volunteers boosts the work of our charity.

2 ANNUAL REPORT FY Together we can make a difference BACKGROUND On 18 May 2012, the Crohn s & Colitis Society of Singapore was established and recognized as an entity by the Registry of Societies. Ten dedicated volunteers from Rotary clubs had stepped forward to initiate an organization to support patients in Singapore who were diagnosed with Inflammatory Bowel Disease (IBD), of which Crohn s disease and Ulcerative colitis are the most common. On 14 January 2014, the Ministry of Health (MOH) granted Charity Status to the Crohn s & Colitis Society of Singapore. OUR EXECUTIVE COMMITTEE KEY OFFICE BEARERS President Vice President Hon Secretary Treasurer Nidhi Swarup Uttam Kripalani Vincent Chen Kaka Singh Page 1

3 OUR VISION To support persons with Crohn's disease, Ulcerative colitis and related health conditions OUR MISSION To create a seamless patient support system that improves the quality of life of patients of Crohn's Disease, Ulcerative Colitis and related health conditions with a focus on four key areas: Patient Support Groups Public Education & Awareness Advocacy Promoting Research 1. PATIENT SUPPORT GROUP Periodic gatherings are the backbone of our work and we are driven by the positive feedback provided by patients and their family members. In order to make the gatherings interesting, we invite guest speakers to share their expertise in order to equip patients with skills to better manage their illness. Going by feedback provided by parents of children with IBD, we have continued to organize combined meetings where adult patients as well as pediatric patients are able to share their experiences in one united group. Our charity has gone one step further in serving members by creating a WhatsApp group. Instead of waiting for monthly meetings, this application connects members on a daily basis to encourage positive thinking. Moreover, when one patient faces a new challenge others provide suggestions to manage it. There are currently 40 patients in this group with strong support provided to each other. It s unfortunate that those patients without a smart phone are left out and we can only stay connected via a phone call, or during our monthly meetings. Patients in Singapore, especially those newly diagnosed have benefitted from the content on our website. Moreover, owing to our website, we have been able to connect IBD patients living in neighbouring countries with Gastroenterologists in Singapore. Page 2

4 PATIENT SUPPORT GROUP MEETINGS FY S.NO. DATE TOPIC SPEAKER 1 6-Jul-13 * PART 1 - Common Ear, Nose & Throat Problems * PART 2 - Therapeutic Art by Touch Drawing * Dr KA Abraham - ENT Specialist * Vijayalakshmi Mohan - Counsellor & Art Therapist 2 31-Aug-13 * PART 1 - Patients' Sharing Session * PART 2 - Common IBD Medicines * Patients, their families and friends * Ms Lim Paik Shia Pharmacist 3 26-Oct-13 * Patients' Sharing Session * Patients, their families and friends 4 30-Nov-13 * PART 1 - Could My Backache be Linked to My IBD? * PART 2 - Patients' Sharing Session * Dr Lui Nai Lee - Rheumatologist & Immunologist * Patients, their families and friends 5 28-Dec-13 * Patients' Sharing Session * Patients, their families and friends 6 22-Feb-14 * PART 1 - Patients' Sharing Session * PART 2 - Relaxation Techniques 7 5-Apr-14 * PART 1 - Is My Diet Making My IBD Worse? * PART 2 - Patients' Sharing Session 8 17-May-14 2nd Anniversary cum Annual IBD Awareness Seminar * Patients, their families and friends * Ms Shilpa Patel - Yoga Instructor * Ms Lim Chi Lee & Ms Pauline Chan - Singapore Nutrition & Dietetics Association * Patients, their families and friends * IBD Awareness Flash mob * IBD Public Awareness Seminar 2. PUBLIC EDUCATION & AWARENESS Dealing with rare chronic illnesses, it is very important to create public awareness about their typical symptoms and the importance of early diagnosis and management. Moreover, our organization continued to bring partners together to create various materials for patient Page 3

5 education. While information booklets on Crohn s disease and Pediatric IBD were published last year, we have produced an informative brochure on Ulcerative Colitis during the current year. An IBD Awareness Video has also been developed to share with members of the public brief stories of IBD patients, medical aspect of the illnesses shared by IBD Specialists and a nurse. Moreover, we have included the formation and purpose of Crohn s & Colitis Society of Singapore. To commemorate our 2 nd Anniversary, we planned two major events on 17 May In partnership with AbbVie, Ngee Ann Polytechnic and Boon Lay CC our charity organized a Flash mob at Suntec Singapore International Convention & Exhibition Centre. About 20 people of all ages, races and gender enthusiastically participated. The event was also used to mark World IBD Day on 19 May and got excellent media coverage from Straits Times, Tamil Murasu and Lianhe Zaobao. As part of our ongoing plan to organize Annual IBD Awareness Seminars, we facilitated a gathering of various stakeholders for a half-day seminar on 17 May at Suntec. Rotary District Governor Chew Ghim Bok was the Guest-of-Honour where 80 patients, families and friends participated and benefited from talks by IBD Gastroenterologists and a Naturopath. This event was supported by Janssen where Medical Social Workers, Nurses, Gastroenterologists and members of public learnt firsthand from patients who shared their experiences and challenges after being afflicted by IBD. Moreover, this year, we were able to reach out to more people in Singapore through a short Radio Programme on 95.8FM. As part of the 10 minute program, a Gastroenterologist, a patient, a mother of a child with IBD and a representative from our charity were interviewed. With the programme being broadcast twice, we hope more members of the public would have heard about IBD and will seek early medical advice from doctors and contact our charity for other support services. Page 4

6 M E D I A C O V E R A G E 3. ADVOCACY Financial impact of IBD being quite significant, our charity is continually exploring ways to engage various stakeholders involved in patient care to highlight this issue. Cost of diagnostic tests, medication, surgery, consultation etc can add-up quickly and as not everyone has adequate insurance, families face financial as well as emotional crisis. Our charity took the following action during the current financial year to provide some relief to them. In order to reduce the financial burden on families of Children with IBD, our charity has created a system where we bulk purchase Modulen and pass the entire 30% discount to patients. Now that doctors are introducing the nutritional drink even to young adults, more patients might benefit from our system. We are grateful to Emtech Wellness International PL for their voluntary support by providing their premises for storage and distribution of the product. Page 5

7 Furthermore, to help patients families we have reached out for support from existing community resources. We have referred some of our patients to Family Service Centres (FSC) to handle multiple stressors faced by a patient s family. FSCs are equipped with trained personnel to provide counseling, help with job-matching and other assistance. We have briefed some of their social workers about Crohn s disease & Ulcerative colitis as well as some of the known effects like fatigue and depression that could lead to difficulties in coping with daily duties. Moreover, we are in conversation with Medical Social Workers in hospitals to look into ways to improve provision of financial support to needy families. We are in the process of finalizing additional support through a Children s Assistance Fund to fully subsidise Modulen for needy children suffering from IBD. 4. PROMOTING RESEARCH Being a new charity, our work in this area is limited to encouraging patients to participate in existing research programmes and understand the importance of their participation. Most patients quickly grasp that most research studies were undertaken in the non-asian countries. As more Asian countries are seeing IBD Cases, a representative from our charity had attended a Conference on Immunology in Jan 2014 in Kuala Lumpur, Malaysia. Our information booklets and corporate brochures were also shared with patients and doctors there. As part of our effort to improve, we have maintained our contact with Crohn s & Colitis, UK and further strengthened it by meeting with Mr. David Barker, their CEO in London. Patient Education Material and support service ideas were exchanged between the two organizations. SINCERE APPRECIATION We are thankful to Dr Ling Khoon Lin, Dr Christina Ong, Dr David Ong and Dr Marion Aw for their invaluable voluntary contributions throughout the year. Owing to Educational Grants from Page 6

8 Page 7

9 PICTURE GALLERY Page 8

10 Page 9