Highlighting the Value of Self Help Groups

Report by Shung-Lon Lai, IBE Vice President and Member of the Regional Executive Committee Western Pacific

To promote the formation of self-help organizations or support groups for people with epilepsy in China, the ILAE Asian Epilepsy Academy (ASEPA) and the IBE Regional Executive Committee Western-Pacific, with the China Association Against Epilepsy organized a workshop in May 2007 on ‘Psychosocial Issues of Epilepsy’. The meeting took place in Huashan Hospital, Shanghai, with local organizers Professor Ding Ding and Professor Zhen Hong from Huashan Hospital, Fudan University, Shanghai.

The main objective of the workshop was to improve the perception among physicians of the psychosocial issues relating to epilepsy, and to raise awareness of the importance of addressing such problems as part of the provision of quality care for people with epilepsy. Local and regional support groups for people with epilepsy were also invited to attend the meeting to talk about self-help groups, their structure and development, and to share their experiences of current successful self-help organizations or support groups in the Asian region.

More than 100 people from many areas of China attended the meeting and this was the first time that a topic of this kind had been addressed. A detailed and thorough discussion forum between those attending and the workshop speakers was the most successful element of the event.

The chair of ASEPA, Professor Chong Tin Tan, opened the meeting with a presentation on the psychosocial problems experienced by people with epilepsy in Asia, including the economic burden caused by the condition, psychological problems, marriage difficulties, employment issues, the treatment gap, and quality of life issues.

Professor Zhen Hong talked about cognitive impairment in people with epilepsy. The possible etiologies for cognitive impairment were attributed to underlying conditions, seizure frequency, seizure foci, and anti-epileptic drugs. Professor Hong made recommendations on how to reduce cognitive impairment for people with epilepsy including drug adjustment and seizure control. Professor Wen Zhi Wang reported on the issue of stigma in China and on a survey on stigma that was carried out under the auspices of the Global Campaign Against Epilepsy, undertaken by the Collaborative Research on Epilepsy and Stigma (CREST) project. The study addressed the stigma issue and made some recommendations for the development of culturally appropriate approaches to reduce stigma and discrimination. The project involved ethnographic studies exploring the prevailing beliefs and attitudes to epilepsy in two developing countries, China and Vietnam. The link between stigma and the burden of disease was also discussed. From the study, it can be seen that the stigma attaching to epilepsy in China is still very high.

Professor Jing-Jane Tsai, Taiwan, the chief program organizer of the meeting, provided a bridge between the medical and lay organisations; he discussed the doctor’s role in the self help organization, the relationship between improving quality of life and the self-help organization. He also presented a poster to illustrate educational activities, supported by the pharmaceutical industry, to facilitate public education and the work of the self-help group itself. Those attending the workshop gathered around the poster and a very interesting and lengthy exchange of experiences took place.

To represent the lay organization, we invited the lay groups to discuss their experiences in creating and running support groups in Taiwan, Japan, Mongolia, Hong Kong, and China.

Dr Shung-Lon Lai spoke about how to establish a self-help group and he briefly introduced the current status of epilepsy self-help groups in the Western-Pacific region. Dr Lai then introduced the structure and model of an Australian group, which he had visited the previous year. This group was founded 50 years ago, had a mature structure, received donations from the public and had a government grant to employ a specialist epilepsy nurse to provide psychosocial guidance. He also talked about the background to the formation of the Taiwan Epilepsy Association, how activities were introduced, how the organisation operated and was governed, and the contribution of the organisation to improving life quality for people with epilepsy in the areas of public education and schooling for people with epilepsy.

Dr Hidemoto Kubota, Chair of IBE Regional Executive Committee Western Pacific, then introduced the Japanese Epilepsy Association, which was formed in 1974. He talked about the association’s 8 important objectives:

• To spread accurate knowledge between members through the publication of monthly magazines, provision of information talks, and the provision of counselling services.
• To create self-help groups for people with epilepsy and their parents in order to facilitate discussion on epilepsy and to make available leisure activities and peer-support activities.
• To promote social awareness through annual meetings throughout the country, through open lectures, and through advertising campaigns.
• To improve the quality of epilepsy care by providing instruction courses for caregivers, school teachers and other professionals.
• To advocate to the government for streamlined approval of new antiepileptic drugs.
• To promote social integration by improving school life, through encouraging involvement in community activities and promoting job opportunities.
• To improve financial conditions for people with epilepsy by advocating for government financial support for medical costs and the provision of a pension system.
• To promote epilepsy research on issues such as quality of life, employment issues, public awareness, and caregivers understanding of epilepsy.
• To promote changes in legislation for people with epilepsy through petitioning the DIET and government departments and through advocating for the introduction of legislation in favour of people with a disability.
• To advocate for changes in driving legislation and to promote the introduction of legislation to safeguard the rights of people with a disability in the area of employment.

In relation to advocating for legal amendments to the Road Traffic Act, Dr Kubota mentioned that letters sent by international friends including IBE, ILAE, and many other supporters to the Japanese government; had been very helpful in lifting the ban on driving for all people with epilepsy in Japan. A person with chronic epilepsy might now be granted a driving license after being seizure-free for a period of two years. In June 2002 the Amended Road Traffic Act was enforced in Japan. During the following 12 months, 1,400 persons with epilepsy obtained a driving licence, with just 157 applications rejected.

Ms Anchor Hung reported on the experience from Hong Kong. In Hong Kong the association is a part of the social service organization of the Social Welfare Department and funding comes from the government. She mentioned that independence, self-help, and mutual support are the ultimate goals of the self-help group. Self-help can take different forms, and have different structures and different focus. A self-help group is centred on the person with epilepsy with assistance from professionals. It is supplementary to the medical and social service fields. The group’s goal is to address the medical, psychological and societal needs of the person with epilepsy.

Dr Tovuudorj from the Mongolia Epilepsy Association talked about experiences in his association. We can understand that in a developing country resources are very scarce. The enthusiastic doctors and paramedics formed the self-help group for people with epilepsy and donated their time and money to help improve the situation for people with epilepsy in Mongolia. Last year they managed to persuade the government to provide financial support for medical costs faced by people with epilepsy and as a result people with epilepsy of low income can now afford to buy their drugs. We were shown a video shot by the students showing a girl with epilepsy, living in the Gobi Desert, who is supported by the Mongolia Epilepsy Association.

Dr Li Shichuo, President of the China Association Against Epilepsy stressed that the notion of support groups for people with epilepsy in China was still relatively new and he mentioned that the inauguration of their association in had taken place in late 2006 in Beijing in the presence of IBE President Susanne Lund.
During 2006, public activities for people with epilepsy took place in 12 cities in China. Dr Li stated that the workshop was helpful in providing a model to those present at the meeting of how to create and maintain a self help group in China.

Dr Ma from Heilongjian, the rural and most northerly part of China, reported on the demonstration project carried out under the auspices of the Global Campaign Against Epilepsy in rural areas of China. The project included an epidemiological survey, intervention study and educational program in 5 provinces covering 2.5 million people.

As a result of the project, local governments had been encouraged to improve medical care for people with epilepsy and this had had a major impact in poor isolated rural districts. Dr Ma showed many photographs demonstrating how drugs are delivered to people with epilepsy during the harsh winter months. It was very encouraging to witness how they worked to provide care for people with epilepsy.