Friday, April 26, 2019

Dedication and commitment to supporting life after stroke in Japan

In March 2019 I was invited to speak about patient involvement at the Non-Communicable Disease (NCD) Global Forum for Civil Society in Tokyo, organised by the Health and Global Policy Institute. I also took the opportunity to visit some inspiring stroke support organisations.

Sarah Belson, International Development Manager, World Stroke Organization and Stroke Association UK

NCD Global Forum for Civil Society
Takenori Yamaguchi, Executive Director
Japan Stroke Association
Following the recent passing of Japan's new Basic Act on Cardiovascular Diseases, the March session of the NCD Global Forum focused on heart disease, stroke and other cardiovascular diseases. The Basic Act aims to ensure a comprehensive and systematic response to cardiovascular diseases across the country. With the Government, healthcare professionals and patient organisations beginning to work on implementation plans for each health condition, the NCD Global Forum was an opportunity to share experiences and insights from patients, legislators, healthcare professionals and international organisations.

I spoke about strengthening patient advocacy and stressed the importance of ensuring meaningful involvement is at the heart of an organisation’s mission and strategic priorities; highlighting the World Stroke Organization’s priority to strengthen global capacity to reduce the burden of stroke, and the UK Stroke Association’s strategic goal to partner with people and communities to help them take action on stroke.

There are lots of great examples from across the World Stroke Organization and its members of meaningful involvement: the Global Stroke Bill of Rights built consensus across experience and contexts to develop advocacy messages; the activities of the Stroke Association of Kenya are guided by the lived experience of stroke survivors; and Stroke Action Nigeria supports stroke survivors to develop local stroke services as a business.

Inspiring stroke support in Tokyo and Osaka

I spent some time with Naomi Sonoda, a dedicated stroke advocate and Director of the Language Support Centre in Tokyo. Naomi was motivated to start this Centre and also the Japan Aphasia Circle, a peer support group, following her husband's stroke nearly 20 years ago. The Language Centre runs daily speech therapy sessions and has four speech and language therapists and 66 members.

In Osaka, I had the most wonderful welcome at the Sumomo Club for people with aphasia. The club is really vibrant, with skilled and committed staff. Established in 2005, the Sumomo Club has 65 members ranging in age from 30 to 90, and runs group activities as well as outreach to families and schools. Its mission is to provide a therapeutic environment for people with aphasia and other communication disorders to be able to participate, communicate and engage in creative activities. Its approach is to reinforce what you can do, not what you can’t. This wonderful video captures the spirit of the club.

The Japan Stroke Association sees its role as promoting and supporting long term care for people affected by stroke. Although this stroke support organisation only has one full time staff member and relies on volunteers, it delivers activities across the 47 prefectures of Japan, which include a helpline and peer support groups.  The Japan Stroke Association has been involved in the Basic Act, in particular consulting with patient groups, and will certainly be actively involved in the development of the implementation plan.

Thank you to everyone I met for such a warm welcome to Japan; at the policy and service level there is a lot to be positive about for people affected by stroke, and it's clear that there is a strong commitment to continue to ensure that people affected by stroke access the long term support that they need.

Staff of the Sumomo Club, Osaka

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