Lombok 70 Project
At the beginning of January 2007 the Lombok 70 Project was in full swing with medical expenses fully covered. The Australian Consulate General's DAP grant funded transport, accommodation and food. The project aimed to bring 70 cleft lip and palate patients from Lombok for treatment in Bali. Group 6 of the project arrived on 10th January and had completed operations by the end of the month. A slight pause then occurred as our Lombok partner was busy with group operations in Lombok and was not able to give the necessary time to organising patients to come to Bali. At this stage we had completed 30 operations.
In March the donors covering medical expenses informed us that they were, quote, 'no longer able to support and finance cleft lip and palate operations for your Lombok children.' We hurriedly applied for funding to the British Community Committee in Jakarta to re-finance the medical expenses. They granted us Rp50,000,000 which was enough to complete a further 23 operations bringing the total to 53 which were completed by mid June, the deadline for completion of the Consulate grant. Despite not having completed the planned 70 operations, we were very happy with the project outcome. It was Yayasan Senyum's first big project and staff learnt a great deal.
Prof David David Visits
Prof David David of the Australian Craniofacial Unit in Adelaide visited Bali and held a clinic at RSUP Sanglah on 15th March. 30 patients were seen and 8 were selected to go to Adelaide for operations.
On the 9th of November, Prof David once again held a clinic at RSUP Sanglah. Along with Dr AA Asmarajaya, Prof David saw 34 patients including check ups for six returned Adelaide patients as part of our ongoing monitoring. Prof David and Dr Ian Wall, with assisting local surgeons, completed two craniofacial operations at RSUP Sanglah on Monday 11th November.
Mary Northmore and Sue Frost took the opportunity of Prof David's visit to have discussions with him and Dr Wall about future directions. As the number of serious craniofacial patients identified at the clinic exceeds the number of operations available to us in Adelaide in 2008, it was decided that a medical team from the Unit will come to Bali. It is hoped that this will occur fairly early in the year and that the team will stay for at least one week. In this way we hope to clear most of the backlog of craniofacial cases.
The possibility of further training in Adelaide for a plastic surgeon was also discussed. It is hoped that we can arrange for one of the younger surgeons from RSUP Sanglah to undergo this training. This will increase the capacity of the hospital to perform operations and will thus benefit our patients.
Ayu, Arham & Rasih
Shortly after Prof David's visit in March, three patients, Ayu, Arham and Rasih, left for Adelaide for reconstructive surgery. Funding for passports, visas, tickets and the Craniofacial Unit fee for two patients was obtained from the Singapore Association and funds from the Smile Shop covered the other. Qantas supplied considerably reduced airfares.
Ayu was the first patient to return, arriving home on 26th of May after very successful surgery to reconstruct her jaw. Rasih and Arham returned on 14th July. Arham had operations to close his cleft lip and palate and reconstruct his nose. Rasih had a severe bilateral cleft lip but she had the added complication of needing surgery on her skull. Rasih will require further treatment when she is older.
In late July Rumiah left for Adelaide to undergo lip and nose reconstruction operations. After very successful surgery, Rumiah returned to Bali in September.
While waiting at RSUP Sanglah's Policlinic, Yayasan Senyum staff noticed a baby with a very large facial swelling and gave the parents a YS card. A little later the parents came to the Smile House to seek our help. Mary Northmore was able to attend their next appointment with the neurosurgeon at Sanglah Hospital. The surgeon reported that the necessary operation could not be done in Indonesia nor Japan or Singapore. A CAT scan was sent to Prof David David in Adelaide and he agreed to treat the baby.
Nyoman Mangku went down to Australia on the 23rd of September. He had an operation on 23rd October and returned to Bali on 17th of November. Prof David was very happy with the outcome. Mangku will, however, require further corrective surgery in Adelaide when he is a little older.
After many months delay due to a medical condition preventing her from passing the Australian visa medical, Rohmawati was cleared for her visa and departed in November. She has had successful surgery and returned to Bali on 16th December.
Rohmawati was the last Adelaide patient for 2007. Two patients identified in March 2007 will go to Adelaide for operations in January and February 2008.
In early March 2007 we were asked by Sanglah Hospital to find patients for a 'bulk' operation at Gianyar public hospital by a team of visiting doctors. By contacting other yayasans in Bali we were able to bring seven patients at short notice to these operations held over three days.
During this time we forged useful relationships with the other yayasans. This has had ongoing benefits for all concerned and we have continued to get patient referrals from other agencies.
Bali Cleft Patients
With the end of the Lombok 70 Project, Yayasan Senyum began to concentrate more effort on providing operations for Bali patients. As the foundation becomes better known, referral of patients is increasing.
Yayasan Senyum aims to work on behalf of poor patients, ie patients who qualify for Surat Miskin. We arrange operations for these patients free of charge. Occasionally patients who do not qualify for 'miskin' status but who are nevertheless not particularly well off, need assistance to obtain an operation. These cases are difficult to judge and each case is individually assessed. In such cases the family may be asked to contribute something towards the costs.
Further developments for Bali cleft patients are outlined in the following two sections.
A generous grant of US$2,500 from The Smile Train, an American foundation, enabled us to produce posters, stickers and flyers in English and Bahasa Indonesia. The grant was designed to enable us to advertise the fact that cleft conditions can be treated and that we are able to assist people to get that treatment.
Yayasan Senyum engaged a designer, which ensured a very professional looking result. Five thousand posters and stickers were printed and three thousand of the English language flyer. The Bahasa Indonesia version is now in the process of being printed.
To effectively use the posters produced using The Smile Train grant, we have begun an outreach program. A pilot project got underway in the Singaraja area in mid September 2007. Gede Roby was hired as our first outreach worker and undertook training at the Smile House.
Using his home as a base, Gede made day trips out to villages visiting Puskesmas, Kepala Desa and Midwives and talking to the local people, returning home each night.
Interestingly, the Puskesmas, although responsible for health, proved generally not to be the most supportive, although always happy to put up a poster. On the other hand, Kepala Desa, show a great interest in the welfare of everyone within their jurisdiction. Gede has found that they also know their people and are a great source of information about potential patients.
He found that by sitting in the local warung, having a coffee and chatting he was able to overcome people's reluctance to admit that a family member had a problem. This may yet prove to be the most effective method of spreading the word that help is available. People open up to a local and it is our intention that future outreach workers will all be employed from the local area.
The number of patients found (15 in the first 20 working days) and the resulting operations, confirms our belief in the worth of having an outreach worker in the field. We intend to continue and expand this work.
Funding for Bali Cleft Patients
We have recently entered into partnership with the Rotary Club of Seminyak who will provide funds to cover expenses for Bali cleft patients. In November a medical team from RSUP Sanglah travelled to Singaraja to conduct ten cleft operations with the first grant of this funding. To reduce costs, Yayasan Senyum entered into an agreement with a private hospital RS Parama Sidhi, to take these patients under the ASKES system which provides funding for poor patients. Operations averaged approx 2.3 million each. We hope to have a second group of similar operations early in 2008. These patients result from our outreach program.
Operations for other Bali cleft patients presently coming to Denpasar are funded out of Yayasan Senyum general funds.
The Smile House
For some time Yayasan Senyum staff have realised the need for somewhere to house patients while waiting for operations and for an office. The first groups in the Lombok 70 Project were housed in a local hotel, records were kept at Sue Frost's house and meetings held at 'Dunkin Doughnuts' at Sanglah Hospital!
A generous donation from Mr Sanford Chee enabled us to go ahead with finding a suitable house. In January we signed the lease on a small house at Jl Nusa Penida No.4A, for a period of two years. Rusmini, who was an Adelaide patient in 2006, was employed as housekeeper/cook.
The house accommodates patients and escorts while they go though the pre-operative procedures and again for as long as they need after the operation. We feel this is working well but at times the house is over-stretched. This accommodation is greatly appreciated and people staying help with cooking and cleaning. They also support each other and the staff feel this informal 'support group' is highly beneficial. Photographs of past patients displayed at the house are always of great interest to patients and parents - we hope that knowing they are not alone in dealing with these problems offers some comfort for parents.
Yayasan Senyum's office was set up in the front room of the house. Having the office has enabled us to consolidate all our records in one place and create a focal point for the foundation. Internet connection has been established at the office.
Yayasan Senyum was two years old in August 2007. During that time we have been increasingly busy and planning has been mostly short-term. All decisions about direction of programs have been made by Mary Northmore and Sue Frost. In mid-2007 meetings were held with staff, board members and volunteers to establish some long-term goals and plans.
This process is still not complete but a draft five year plan has been started. Goals identified in the draft plan are (goals underlined have already had some action taken):
Short term goals (within next three months):
1.create organizational structure (from board to house staff)
2.create community awareness materials
3.identify means for tax deductibility status
4.update any administrative or patient record processes that need it
5.create detailed planning and budget for upcoming year
6.agree on report format and frequency for board of directors
7.generate materials for potential donors (brochure, DVD, etc)
8.train house staff to improve nutritional content of meals
Mid term goals (within next year):
1.establish tax deductibility status
2.secure funds for new facility
3.obtain vehicle for patient transportation
4.identify and establish network local organizations that can assist with outreach
5.create and train outreach team to fill in the gaps
6.begin outreach activities in one sector of island
7.increase number of patients receiving services
Long term goals (within next five years)
1.outreach activities throughout island
2.training program for local docs
3.identify other location for services
4.set up office in Lombok
5.expand outreach activities on other islands
Lack of time by staff and volunteers is always a restraint in implementing plans.
The Smile Shop
Since being opened at the end of 2006, the Smile Shop has gone from strength to strength. Generous donations from individuals and businesses such as the hotels have enabled the shop to return funds of over 180 million Rupiah to Yayasan Senyum to date.
The Smile Shop manager, Carrie, and her staff are tireless and enthusiastic workers. The money generated by the shop has been crucial to the success of Yayasan Senyum.
Website - www.senyumbali.org
Yayasan Senyum's website was set up in 2006. Following an advertisement in the Bali Advertiser in early 2007, Paolo Scarabelli came forward to offer his services as a volunteer to look after the website.
Paolo has made many excellent changes, greatly improving the quality of the website. Most significantly, he has made all the newsletters available both on the site and in PDF form. We are continuing to develop the website with him.
Ongoing from 2006 Made Rony Sri Widawati (Oki)
February 2007 Rusmini
August 2007 Desak Made Sukma Dewi (Sukma)
September 2007 Gede Roby
2006/2007 Sue Frost (finished work December 2007)
Yayasan Senyum has been very fortunate in being able to hire excellent staff. Our Patient Co-ordinator, Oki, who started work in 2006, has become an expert on the health system and getting patients through the process of hospital admission.
Rusmini, as housekeeper and cook, is a great asset to the Smile House. As a past Adelaide patient who understands what it is to live with a craniofacial deformity, Rusmini shows great empathy towards our patients. It is reassuring for those going to Adelaide to talk to Rusmini about her experiences.
Sukma has been with us since August this year although she worked as a volunteer for some time before becoming a staff member. Sukma is a highly intelligent, innovative and dedicated worker. Sukma has taken over much of the work previously done by Sue Frost, managing the projects, having responsibility among many other things, for the patient records database, accounts and liaison with Adelaide.
Again, we were fortunate in hiring Gede Roby as our outreach worker in Singaraja. He is a self-motivated and dedicated worker who shows much initiative and cares greatly about the work he is doing. His results have been excellent and he has been able to give us very useful feedback for future planning of outreach projects.
Four newsletters have been published during 2007 - see attached copies.
Yayasan Senyum has been very successful in attracting donations in 2007. To date, individuals, businesses and government bodies have donated over 220 million Rupiah and US$4058. The Smile Shop (selling donated goods) has contributed Rp184,500,000.
One problem Yayasan Senyum has had with donations is that, while giving money for 'operations' is popular, most donors do not realise that medical expenses are just part of the process of providing operations. Our experience tells us that finding patients (eg outreach), transport to hospital, accommodation and food are an integral part of any operation.
This year we have been able to overcome this reluctance by giving talks to potential donors accompanied by a PowerPoint presentation using before and after photographs. The Rotary Club of Seminyak, for example, now fully accept the need to fund support services for patients coming for operations in Singaraja.
Yayasan Senyum has established credibility and accountability with donors and works hard to keep this good name by presenting comprehensive reports to grant donors. See attached letters of recommendation from the Australian Consulate General and the British Community Committee.
Attached are the financial records for the year to mid-December. These accounts have been audited by our internal (volunteer) auditor, Bpk Jack Suryo, and will then be passed to a Public Auditor for approval.
Plans underway for 2008 include:
Continuation of Outreach in Singaraja area
Operations Singaraja - January
Two Adelaide patients - January and February
Craniofacial operations by Dr Asmarajaya - RSUP Sanglah
Prof David David visit - March
Operations by visiting ACFU team - April
Continuing cleft operations at RSUP Sanglah and RS Dharma Yadnya for new patients and recalls
Development of plan for building premises
Sue Frost/Mary Northmore
31 December 2007