Группа, созданная в феврале 2014 г. в социальных сетях «Помогать легко» для помощи онкобольным детям, превратилась в Общественный Фонд к концу того же года. Группой были подняты проблемы грубейшего нарушения прав человека, прав пациентов детского отделения НЦО в социальных сетях. И благодаря совместным усилиям фондов, НКО, журналистов и Минздрава, удалось кардинально изменить ситуацию, которую не удавалось изменить в течении 15 лет в детском отделении НЦО. Вместо 1 врача и 1 медсестры, сейчас в отделении работают 6 врачей и 10 медсестер. Стало возможным обучение новых специалистов по детской онкологии.
Шаг за шагом решаются годами не решавшиеся проблемы. Так волонтеры занимаются переводом материалов по детской онкологии, с английского языка помогая специалистам по доказательной медицине в создании клинических протоколов лечения детей от рака согласно международным протоколам. За 2 года путем народного финансирования – crowd funding нам удалось собрать для детского отделения НЦО более 6 000 000 сом материальной и финансовой помощи и около 2 000 000 сом было привлечено для детей больных раком из Казахстана, находящимися на лечении в Южной Корее.
Просьбы родителей публикуются в режиме онлайн в соцсети Facebook и помощь собирается тут же, как по «сарафанному радио». Те, кто нам помогает больше интернет аудитория, которая может прочитать пост о помощи и перевести пожертвование онлайн.
Общественный Фонд «Помогать легко» это фонд нового формата в Кыргызстане. Фонд-не единица, ограниченная словом «юридическое лицо», а фонд — движение. Наше движение объединяет людей готовых помогать, о нашем фонде знает и помогает Президент и наши соотечественники за границей. Мы ЗДЕСЬ И СЕЙЧАС, оперативно помогаем родителям детей больных раком. Так родилась идея проведения Благотворительных Ярмарок. С сентября 2014 г. было проведено более 8 ярмарок и собрано более 500 000 сом для покупки жизненно важных лекарств для онкобольных детей. Принцип работы ярмарки абсолютная прозрачность и 100% средств передаются адресно. Выпечка, бижутерия, картины и другие товары дарятся для продажи волонтерами. Деньги покупателями бросаются в прозрачный ящик, и за это покупатель получает «Помогайку» талончик на покупку товара. В конце дня деньги подсчитываются волонтерами, и объявляется сумма сбора. В рамках таких ярмарок мы проводим также концерты с участием звезд. Все они участвуют бесплатно, также как и волонтеры продающие товары с утра до вечера.
Мы убеждены, что какими бы ни были мотивационные начала благотворительности, их результат должен быть полезным, прежде всего, другому человеку, обществу, а не самому жертвователю, или организаторам!
В октябре 2015г. открыт Первый Детский Хоспис и начала работу Выездная Служба помощи на дому. И это первые шаги в становлении Детской Паллиативной и Хосписной помощи в нашей стране
В настоящий момент у нас большое количество проектов и программ, и вы можете присоединиться к нашей команде!
“Helping is easy” is a Charity Foundation based in the Kyrgyz Republic, which was launched in October 2014 , until when it was an informal movement of the local volunteers trying to help children with cancer from poor families through raising money. Its primary beneficiaries are children diagnosed with cancer, who are the patients of the children department of Kyrgyz Republic National Oncology Centre (KR NOC), the only medical hospital in the country treating the little patient with cancer.
By now the Foundations has initiated a number of projects and initiatives that are focused on direct help to cancer patients in need, funding their diagnostics and treatment costs, improving access to medication and reducing prices for cancer drugs in Kyrgyzstan, improving the conditions for patients and doctors at the National Oncology Centre, promoting the expertise building among the medical personnel involved in oncology.
One of the most important projects of the foundations was opening of the first children hospice in Kyrgyzstan in October of 2015. Currently hospice building’s rents and all expenses for running it are funded through the private donations. The city council of Bishkek offered a spacious building for the Hospice. The President of the country offered funding to cover the renovation cost.
The activities and projects “Helping is Easy” foundation largely focused on increasing access to the better cancer treatment. Below are the list of the projects and streams of activities worth mentioning:
“Without pain” is an initiative run since 2014. When just starting learning about the problems in the children cancer care, the Foundation’s leader realised that the doctors in Kyrgyzstan still using old fashion painful methods of treatment while many new easy and not costly methods are already available and used in many countries. These were not practiced at hospitals of Kyrgyzstan due to ignorance and sheer negligence of the healthcare authorities and lack of modernisation in entire healthcare. The Foundation initiated a fundraising campaign in order to purchase special pain reducing creams, painless needles, painless lancing devices for collecting blood samples, and the narcosis apparatus for anaesthesia. The Foundation has lobbied that the pain reducing Fentanyl transdermal patches are included in the registry of the medical drugs allowed for use in Kyrgyzstan. Currently it is lobbying that the morphine in oral drops is also included in the registry and made legally available in Kyrgyzstan since this is the most appropriate form of morphine for pain management in children and it is commonly used across the globe. As a result of the activities of the Foundation, since 2014 all painful treatment in the children department of the Kyrgyz Republic National Oncology Center (which is the main place in the country treating children with cancer) are anesthetized.
“Improving the quality of medical treatment of children with cancer” is another significant pillar of the activities of the Foundation. Since 2014 there is a systematic collaboration with foreign experts and paediatric oncology centres in several countries. The foundation raises funds and covers the cost of training of doctors and nurses from Kyrgyzstan in more advanced cancer care centres abroad. The Foundation regularly invites leading experts to come to Kyrgyzstan and perform surgery operations, conduct workshops and consultation sessions for local medical personnel. Two international conferences have been hosted in Kyrgyzstan which focused on issues of children oncology and hematology, which brought together renown international experts and the national high level authority representatives
“Reforming the children cancer care practices” was one of the early activities of the Foundation which started before the foundation was officially set up, and which is still pursuing. Until 2014 the children department of the Kyrgyz National Oncology Center had only one doctor and two nurses and patients suffered from lack of proper attention of the doctor and poor treatment. In addition the building and facilities of the department were in terribly poor conditions. Thanks to the advocacy activities and bringing attention of government and mass-media to the understaffing problem, the situation has improved and today there are 6 doctors and 10 nurses working at the department. The department has been moved to newer, better maintained building. Volunteers helped to renovate the building. Long lasting problems of state underfunding of the oncology centre were made to be heard by the President and the top level government officials. Today the Foundation and the children’s department of Oncology Centre are closely cooperating with the members of the Parliament and the Foundation ‘Ergene’ focusing on protecting rights of cancer patients. Another advocacy activities of the Foundation has been focused on regulating the prices of cancer treatment drugs in Kyrgyzstan, which have been much higher than on other countries due cartel system organised by the drug suppliers. The press-conference on this issues on the national news channel resulted in the 5-fold drop in prices for cancer drugs.
“Musical therapy for little cancer patients” is another volunteer project initiated by the Foundation. Since early 2016 they invite musicians once a week to come to the oncology centre to play music and teach music to little patients. Such therapy is widely practiced in the advanced countries and has proven to be good compliment to the traditional treatment methods.
- One of the most important projects of the foundations was opening of the first children hospice in Kyrgyzstan in October of 2015. This was made possible through drawing attention of many people and businessmen who regularly make financial and in-kind donations to cover rent and other expenses of the hospice. Zero funds from the state budget has been invested for opening and maintaining activities during the first 1.5 years of the hospice functioning. In October 2016 the Mayor of Bishkek offered a building for the permanent rent-free use by the hospice. Ex President of Kyrgyzstan allocated money for renovation of the hospice building
- Thanks to the initiative of the foundation and her leader Ms Aliaeva the palliative care advisory services have been opened at the 2 children’s institutions in different part of Kyrgyzstan. Local doctors and nurses were trained on palliative care methods and support and will be able to offer advises to patients and their families.
- Mobile/home visit palliative care service has been organised since August 2015. This was made possible thanks to the raising funds for a (second-hand) car that now belong to the hospice and is used for visiting patients, and their transportation if needed. The team of medical doctors and nurses visit palliative patients at
- Propagation the concept of palliative care has been another mainstream activities carried by the foundation leader and her supporters. Information is being spread via mass media, interviews, news programmes, newspapers, social media sources. Medical doctors, nurses, parents are another channel and group directly targeted. They are invited to seminars, conferences, meetings, face to face interactions which explain the rationale and purpose of the palliative care. This is resulting in higher awareness and cultural transformations among many stakeholders in Kyrgyzstan.
- Children patients with cancer:
About 600 children patients of the children department of the Kyrgyz Republic National Oncology Center (which is the main medical hospital in the country treating the little patient with cancer), are now hosted in a better environment. Furthermore, the numbers of doctors and nurses at the departments has increased from 2 to 16.
About 600 children with cancer who received access to pain alleviation methods, which includes special pain reducing creams, plasters, painless needles, etc, which were not practiced at hospitals due to ignorance and sheer negligence of the healthcare authorities
80 palliative children patients from low-income families were hosted at the first children hospice since its opening
- Families and parents of the children with cancer
235 families/parents of children with cancer, who could not afford medication and diagnostics costs. These costs were covered through funds raised by the foundation
More than 600 parents who learned about rights of their children to access pain reduction methods in medical treatment, who before that considered the old fashion painful methods as standard practice. Many more patients and their families learned about these rights and modern pain management methods that the healthcare services must offer them. This was thanks to the information campaign (incl. consultations and special leaflet dissemination) initiated by the foundation
- Local medical personnel: doctors and nurses working in oncology care
18 local medical personnel learned new modern methods of children cancer treatment and palliative care via exchange visits to the advanced oncology clinics in Russia, Kazakhstan and Uzbekistan with which formal collaboration agreements have been signed due to the help of Foundation’s personnel who looked out for establishing contacts with more advanced medical centres and hospices.
120 local medical personnel attended the first international conference on paediatric oncology and the seminars on palliative care held by leading experts from Russia, Germany, Kazakhstan, Mongolia, Azerbaijan and increased their expertise and knowledge in the new treatment practices.
4 medical doctors attended surgery operations conducted by the leading oncologists from Russia invited to Kyrgyzstan for sharing their expertise 23 medical personnel the children department of the Kyrgyz Republic National Oncology Center are working in better conditions in renovated building. Furthermore, full refurbishment of the 3 intensive care wards at the department are currently ongoing thanks to the donations of citizens.
Donations from citizens (via transfer on bank account, electronic wallet, paypal account – constitute to around 75% of all raised funds
Donations from business companies – around 15%of all raised funds
Funds raised via charity fairs and concerts (since 2014, 9 charity fairs have been organised) – around 10% of all raised finds
Financial support from BILD hilft e.V. «Ein Herz für Kinder» for children diagnosed with cancer via Dinara Aliaeva request – 110 000 EURO
One time contribution from the Ex President Fund – 44.000 USD for refurbishment of the a building for the first children’s hospice
There are several impacts that have been achieved by the activities
We will summarise them below:
- Practicing modern methods of pain alleviation is new step in the Kyrgyzstan’s medical care and oncology. This impact will stay as there is a much better knowledge about the modern methods of pain relieve during cancer treatment and new norms introduced in the clinics. Furthermore, the patients and their families are better aware about their rights to access pain relieve treatment. Together with the new norms, this will ensure that the treatments will be based on pain alleviation principles in the long run
- Palliative care as an area of medical care system has been non-existent in Kyrgyzstan. Dominant majority of people, and even the representatives of government still have no or little understanding about the palliative care, its purpose and why hospices are important. No medical staff, nurses, psychologist have ever been trained to deal with palliative patients, especially with children, and their families. The activities of the Foundation and it leader have made a tangible contribution in increasing awareness of general public and especially the public authorities in bringing the palliative care. The city authority representatives who 1,5 year ago needed simple explanation on what the hospice is, have recently offered a building for the first children’s hospice rent-free and cover the salaries of the hospice’s personnel. In addition, the palliative care advisory services have been opened at the 3 centres for children’s palliative care in different part of Kyrgyzstan, where trained doctors and nurses can offer their advises to patients and their families. This means that more people in need can get advises and support.
- “Helping is Easy” and its leader Dinara Aliaeva were first to break down the ignorance and brought the topic for paediatric palliative care on a level where people, and representatives of the state bureaucracy in the country started to understand its importance. This is a tremendous cultural and mental change in people’s heads and the structural change in the state healthcare system. The Foundation’s leader is the first person on Kyrgyzstan who opened a Children’s Hospice. Notably, this has initially been done with zero support from the state, using only on donations from citizens and businessmen. This example became a strong demonstration case for the city authorities who eventually offered a building for a permanent use of the hospice on a rent-free ground.
- The Foundation approaching the paediatric oncology problems from the systemic perspective. In other words, it addresses these problem from many angles, including direct support of patient, building capacity of doctors, and breaking the old fashion medical care system. More specifically these are:
- medical expertise development
- advocacy for increasing the medical stuff at the children oncology department,
- promoting “pain alleviation” methods, advocating the cancer patients’ rights for a “less painful” medical care and increasing their awareness on their right as the patients,
- investigating and communication about corruption practices at the Children oncology department and promoting transparency in the activities of the department,
- promoting palliative care for children patients with hopeless cases, namely opening a hospice, palliative care advisory offices, mobile/home-visit palliative care services
- raising funds for families who cannot afford medical care, diagnostics and medication for their children with cancer
- demanding and acquiring better facilities for children oncology department
- One of the most important channels of a wider outreach is the training of the medical personnel on modern paediatric cancer treatment, pain alleviation and palliative care: Over 120 of medical personnel from different regions of Kyrgyzstan attended the conference and seminars where they learned the palliative care approached and methods. Many doctors have learned about the pain alleviation methods in dealing with the cancer patients. This knowledge and methods are applied when they are back in their regional clinics. The knowledge on palliative care is and will be constantly passed to the parents and families of the children needing such palliative care. The chart below shows a system of how the knowledge on palliative care is passed and how wider outreach of families of cancer patients takes place:
Links to the news articles and interviews, videos covering the initiatives of the Foundation are listed below: