Working in partnership with civil society to respond to stroke rehabilitation needs

07 Feb 2024 Stroke support

Ensuring people affected by stroke have access to rehabilitation and support is essential for health, well-being and social participation.

We know that many countries do not have sufficient quantity and quality of stroke rehabilitation services. Along with a number of recommendations, the recent WSO-Lancet Commission on Stroke called for the establishment of multidisciplinary rehabilitation services that adapt evidence-based recommendations to the local context, including the training, support, and supervision of community health-care workers and caregivers.

Many stroke support organizations around the world are doing just this, developing community based rehabilitation that is appropriate in their health system context, working with volunteers and building partnerships with government services.

The National Stroke Association of Malaysia

The seed for The National Stroke Association of Malaysia (NASAM) was sown in 1995, when stroke survivor Janet Yeo’s story of recovery appeared in a newspaper. This prompted an avalanche of responses from the public and resulted in the formation of a stroke support group. The group initially met for talks from healthcare professionals but as word spread, many called for the development of services for stroke survivors (known as strokees at NASAM).

NASAM’s first physiotherapist Doreen Tan recalls: “We had about four strokees in the beginning. The numbers grew very quickly, and our daily two-hour sessions crept from the porch into Janet’s house. Not long after, we realised we needed extra hands and that’s when volunteers first came to our rescue. Soon after it evolved into a place where strokees and caregivers could gather for therapy, advice, information, friendship and, at times, a shoulder to cry on.’’

One of NASAM’s other pioneering members, Kamsiah Bostock, initiated volunteer training which is still ongoing. Today NASAM carries out its work through eight stroke centres across Malaysia. These centres provide affordable stroke specific rehabilitation from Monday to Friday, which would not be possible without the help of volunteers. Stroke survivors have a choice of group therapy or a customised one-on-one therapy, or both. Volunteers are trained to help stroke survivors with their rehabilitation, and to counsel families facing the increased responsibility of caring for a strokee.

The Heart and Stroke Foundation of Barbados

The Heart and Stroke Foundation of Barbados works in collaboration with the public health care system to ensure people who have a stroke have early access to rehabilitation in the community. The situation in Barbados is all too familiar: an over-stretched and over-worked public health care system that is not always able to provide the optimal amount of rehabilitation for people that have experienced a stroke.

Heart and Stroke Foundation of Barbados has therefore prioritised its rehabilitation programme to meet the needs of stroke survivors and to work alongside the public health care system. The foundation has a specific arrangement with the Ministry of Health and Wellness to facilitate enrolment in the rehabilitation programme and receives referrals from the Queen Elizabeth Hospital. The foundation collaborates with consultants and professional volunteers to adequately deliver the necessary elements for this rehabilitation programme. However, there is still a need for greater collaboration because of the high demand for services within the community.

Stroke survivors meet twice a week and activities are planned and guided by the occupational therapist and the rehabilitation therapy technician. Within the programme, the Heart and Stroke Foundation of Barbados also facilitates a support group to respond to the psychosocial needs of stroke survivors. The support group has helped stroke survivors cope and adapt to the effects of their stroke and find hope for the future.

Global Stroke Bill of Rights

The Global Stroke Bill of Rights is an advocacy tool that can be used to support calls for improvements in rehabilitation services. In the document stroke survivors and caregivers prioritised access to: the best stroke care, information and preparation and recovery support.

Read, sign and access Global Stroke Bill of Rights campaign resources here

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