Oman hereditary blood disorder association

The Problem

There was a considerable threat of the Hereditary blood disorders (Sickle Cell, Thalassemia, and G6PD) on the Omani society. Statistics show that 60% of Omanis carry one gene of a hereditary blood disorder reflecting that 6% of the Omanis carry the Sickle cell genes among which 2% are sickle cell patients. Another 10% of the Omanis carry the Thalassemia (Beta) gene and 2% of these are Thalassemia patients. Statistics also show that about 25% of the males and 10% of the females in Oman carry the G6PD gene. These numbers represented a hazard that the Omani society has to step forward in order to freeze the expansion of these numbers and then work towards reducing the numbers gradually for the coming generations in order to have a healthier nation and help reduce the suffering among the patients and their families as well as have healthier new generations.

Awareness was at its lowest levels regarding these disorders to the extent that even among the medical teams the patients tended to be known as drug addicts not patients. This also reflected another problem facing these patients which was mistreated during the crisis. The lack of Emergency Response protocol indicated that the door is opened to the enthusiasm of the medical staff and their understanding as well as their willingness to help the patients suffering from blood disorder illnesses. Moreover, the patients could only get treatments in the hospitals in which they are registered because their medical files are not readily available on a network data base that allows other hospitals to access their data and then offer them medication. In addition, no hematologists were deployed in the interior regions in Oman. They are only available in Muscat, the capital of Oman. Hence, patients from the interior regions had to travel long distance to get proper treatment.

Due to their sickness and their continuous need for hospitalization according to the criticality of the crisis, the patients indicated a high dropout of schooling and work. The high dropout from school was due to two main reasons: the lack of knowledge among the school staff of the blood disorder illnesses and the amount of knowledge lost during the absenteeism periods leading to very low educational attainment. These problems lead to a high rate of unemployment among these groups of patients leading to more psychological and financial difficulties. These difficulties, consequently, lead to more crisis and more requirement for medication and medical attention.

With no immediate cure till today, patients suffering from hereditary blood disorder diseases are doomed to a life filled with ambiguity, pain and stress as they need continuous treatments throughout their life. In addition being socially stigmatize as “drug addicts” further erode their self confidence and not being able to find employment make financial sustainability for these patients a constant challenge. Nobody was seriously looking into the serious consequences of these patients which indirectly affected the creation of robust Omani workforce essential for a developing country like Oman until patients and their families decided to get together and pull their resources and knowledge for the benefits of those suffering from blood disorder sickness.

Solution and Key Benefits

 What is the initiative about? (the solution)
Oman Hereditary Blood Disorder Association (OHBDA), is a privately run non-profit organization. The OHBDA was officially announced on 14 June 2009 according to the Ministerial Decree No 75/2009 with the aim of creating awareness among public on how to avoid the spread of hereditary blood disorder and to provide a wide range of services for patients and families.

The on-going initiative has been developed to recognize hereditary blood disorder patients' special needs in various environments; educational, vocational and health institutions. It initiated by forming a joint committee with the Ministry of Health where a number of subcommittees were working on improving service delivery on a number of aspects: creating educational channels of communication between patients, their families and medical specialists, as well as for public awareness, training staff on how to develop rehabilitation programs for patients designed to meet their diverse psychological needs, and screening the quality of medical service provided for blood disorder patients across country through conducting a field survey measuring capacity building, tools and medication, admission procedures and emergency protocols, state-of-the-art database system (software) that can be accessed throughout the country providing up-to-date data, transparency, facilitating policy making procedures, and providing better services to end users.
Collaborate effort is taking place between OHBDA, Sultan Qaboos University and Sultan Qaboos University Hospital to establish a consultation center for hereditary blood disorder patients.
OHBDA is closely working with the Ministry of Health to establish Day Care Centers for blood disorder patients at all hospitals country-wise. OHBDA is also working with an IT private institution to develop software that can be used to build a state-of-the-art database that would lead to a more effective and responsive public administration, as well as to promote the visibility and improve the delivery of medical public service.
Concurrently, OHBDA is working on advocacy and policy making level with the Ministry of Manpower, Oman Chamber of Commerce and Industry, and the Labor Union to improve the Labor Law and create job opportunities taking into consideration blood disorder patients' special needs. On the other hand, OHBDA is working side by side with the media, Ministry of Information and Ministry of Religious Endowments and Religious Affairs to raise the level of public awareness within society through different educational channels that target various age groups; TV, radio, press, Facebook and Twitter.
A two-month vocational training program (Training for Jobs) on a range of various fields was designed and addressed to (44) hereditary blood disorder patients. It was conducted by an Institute of Change Management and funded by Petroleum Development Oman (PDO). The graduates of this programme can now find suitable employment in the private sector.

Actors and Stakeholders

 Who proposed the solution, who implemented it and who were the stakeholders?
The initiative was a result of a series of symposia and discussion panels co-organized by OHBDA and public health care institutions, a number of meetings held with decision makers and various public and private institutions, a series of field visits to hospitals and schools and a number of meetings with patients, their families, counselors of behavioral medicine, social activists, religious leaders, IT and media specialists, as well as OHBDA members.

The initiative is implemented through collaborate efforts endeavored jointly by a number of public and private institutions, as well as civil society organizations. From the public sector, Ministry of Health, Ministry of Information, Ministry of Education (Peer learning program), Oman Chamber of Commerce and Industry, Ministry of Manpower, public hospitals and Sultan Qaboos University are involved. From the private sector, Petroleum Development Oman and Institute of Change Management. Invitations to take part of the initiative are conveyed to a number of companies and non-governmental organizations to take part.

(a) Strategies

 Describe how and when the initiative was implemented by answering these questions
 a.      What were the strategies used to implement the initiative? In no more than 500 words, provide a summary of the main objectives and strategies of the initiative, how they were established and by whom.
The strategies were based on the latest indicators and statistics of hereditary blood disorders spread among Omanis, and the findings of the field survey conducted through the joint committee with the Ministry of Health. To achieve the objectives of the OHBDA in promoting awareness regarding blood disorder sickness, a screening survey was conducted to look at the existing overall quality of service provided, the level of software system used if any, the quality level of tools and techniques used, and the standard of medical and psychological support provided. The findings showed that the software system used was terribly poor from various aspects and dimensions; data-wise, accessibility-wise throughout the country, research-oriented wise, quality service wise and capacity building wise, as well as facilitating policy making and development wise. The system did not need only an upgrade, but rather required building and developing one!
As to implement the awareness initiative, OHBDA started to network and initiate partnerships with the public, private and civil sector institutions to ensure the deliverables and success of the initiative. The initiative was based on a number of objectives: provide a high quality of public service delivery in terms of speed, convenience, accessibility and by being patient- oriented through a state-of-the-art database software; incorporate patients' feedback; work closely with the relevant governmental bodies to authorize laws and regulations that put pressure on the significance of pre-marriage genetic screening and the patients' special needs at educational and vocational institutions; build partnership with the public, private and civil sector to jointly work towards welfare and sustainable development; track and follow up the latest findings and results of research on treatments and provide them to patients and their families and encourage relevant research to be carried out; create educational channels of communication between patients, their families and medical specialists, as well as for public awareness.

(b) Implementation

 b.      What were the key development and implementation steps and the chronology? No more than 500 words
The OHBDA was formed in June 2009. Following that a series of meetings were held with a number of decision makers and medical specialists and administrators. Then, a joint committee was formed with the Ministry of Health to start working on a screening survey. The results and findings of the survey along with a number of discussion panels and symposia attended by decision makers, specialists, patients and their families, activists, supporters and the media drew the road map to carry out this initiative and mark it as a priority and necessity. Partnerships were promoted with various sectors to ensure the success of the initiative. The Association is actively pursuing all the other objectives of the organizations and til date has successfully created awareness of the blood diseases.

(c) Overcoming Obstacles

 c.      What were the main obstacles encountered? How were they overcome? No more than 500 words
Funding was the main challenge as OHBDA is considered one of the recent founded NGOs, however, different companies were contacted to sponsor the project. The other obstacle was finding a readymade system that would facilitate implementing the project, yet, in this regard, the association contacted four companies working in the field to offer insights of how such a system can be designed and operated.
Oman being a vast country with population spread across 309,500 sq km, spreading the awareness programme was a mammoth task. However, riding on the rampant growth of mobile connectivity in the country, the OHBDA was able to reach the masses through the use of social media network such as Facebook, Twitter and YouTube. In addition, through collaboration with the Ministry of Awqaf or Religious Affairs, OHBDA held regular radio and TV programmes to discuss on the need for pre-marital blood screening and counseling from the Islamic perspective. This is over and above the OHBDA participation at key events such as the Muscat Festivals which attracted millions participations each year and the Khareef Festival in Salalah.

(d) Use of Resources

 d.      What resources were used for the initiative and what were its key benefits? In no more than 500 words, specify what were the financial, technical and human resources’ costs associated with this initiative. Describe how resources were mobilized
The initiative utilized the available financial, human, and technical resources that were available with the association and requested support from the Ministry of Health, Ministry of Manpower, and other leading companies in social services such as the Petroleum Development of Oman and Oman Natural Liquid Gas Company. A committee was formed of members of the Ministry of Health and the OHBDA to investigate the needs and report the problem in order to analyze the situation and plan for tackling the problem. Visits were made to the officials in the Ministry of Manpower and the Omani Labor Union to discuss the legislations concerning the patients’ needs and requirements.

Sustainability and Transferability

  Is the initiative sustainable and transferable?
The initiative to raise awareness of the blood disorder diseases in Oman is highly sustainable with the use of the state-of-the-art database software system that would be adopted by the Ministry of Health and its public health care institutions to ensure accessibility, timeliness patient-oriented quality service, transparency, and an up-to-date data. The accessibility of patients' records and data would also ensure the appropriate delivery of service, medication, support and consultancy as time and place would not be a challenge anymore throughout the country.

The system would encourage dynamic research and development and would generate better practices and policies. It would also develop knowledge management strategies and action plans. Thus, Information would be converted into explicit knowledge, and understanding the impact of effective knowledge application would promote public delivery and governance.

The adoption of a high standard software system is economic on the long run as its in-put would carry a policy making impact socially and economically.

Lessons Learned

 What are the impact of your initiative and the lessons learned?
1. After vigorous lobbying and dialogues with the Minister of Health, a Ministerial Committee to improve the services for the blood disorder patients was formed to look into all issues related to blood disorder patients. This is a great milestone and confidence booster for the OHBDA as it continues to advocate changes in government policy for the management of Omanis with blood disorder sickness.
2. A national protocol for the management of blood disorder patients was implemented to standardize the treatment in all hospitals and medical centers throughout the country. This would eliminate the stigma that sickle cell patients are drug addicts and not treated seriously as A&E doctors thought that the patients are merely drug addicts seeking for more strong drugs
3. Day care unit for blood disorder patients are being established in major hospitals across the country which foster better care for these patients.
4. Successfully lobbied for the addition of test for sickle cell and thalessema for infant to be conducted at the 9th month which is included in the checklist for infant growth programme in the Al Shifa System (Ministry of Health Patient Management System)
5. Establishment of support structure to handle the psychological aspect for the family of blood disorder patients with action plan to train social workers in the hospitals and Association volunteers to be trained in counseling skills to support the family which will commence in early 2012 with 50 volunteers already selected.
6. Empowerment activities for blood disorder patients. Many of the patients are unemployed and many are fresh school leavers or drop out. The OHBDA completed training for 44 patients funded by PDO, which comprised tailored made training programmes for patients such as in Administrative, IT, basic skills of employment such as office skills. Management, IT, etc. With collaboration from the Ministry of Manpower, these young men and women will be gainfully employed by the private sector. The Association is also advocating that the Ministry of Manpower accords the private companies which employ graduates of this special programme the same status as that of employing a person with special needs. According to the Ministry of Manpower directive, company which employed a special need person will be accorded higher Omanisation Quota and this would boost their omanisation requirement for other manpower services required from the Ministry.
7. In collaboration with the Ministry of Religious Affairs, TV programmes explaining the blood disorder sickness and the need for pre-marital screen and counseling from the religious prospective were produced and broadcasted.

Lesson learnt

1. In the enthusiasm to set-up the Association and paper work related to the establishment of an Association, the founding members did not establish the internal structure of the organization before the official launching of the Association. This created some problems when the activities of the Associated commenced upon the launch. Hence, an organised approached in setting up the association for better results is essential coupled with formalizing the organization before announcing the activities.
2. Under the non government law of the association, an association requires a list of 45 founders before applying for the approval. This took some time as not all members are keen to be appointed as founding members.
3. Since the Association is a not-for-profit organization and depends a lot on volunteers, there is a need to educate the spirit of volunteerism in the country as a whole.

Contact Information

Institution Name:   Oman hereditary blood disorder association
Institution Type:   Non-Governmental Organization  
Contact Person:   Thuraya Al-Hosni
Title:   Mrs.  
Telephone/ Fax:   00968 24533750
Institution's / Project's Website:
Postal Code:  
Country:   Oman

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