What Support Means for Stroke Survivors: Rehabilitation, Hope and Connection

There are an estimated 17 million strokes worldwide each year, putting the disease on the leader board as the single largest cause of disability and the second leading cause of death worldwide.

While stroke incidence in high income countries has been on the decline in recent years - largely due to improvements in preventive and acute treatments - a consequence of an ageing population is that these countries are seeing a growing proportion of people living longer with the physical, communication, emotional, social and financial consequences of stroke.

The challenge is heightened in low and middle-income countries where stroke incidence has reached epidemic proportions and where trends show increased prevalence of stroke risk factors and stroke incidence in a much younger population. Significant barriers to timely and optimal stroke care, which impact negatively on recovery, are compounded by difficulties in accessing post-stroke rehabilitation and long-term support for complex care needs.

The most recent Global Burden of Disease report shows that stroke was responsible for over 116 million years of life lived with disability (YLLDs) worldwide in 2016 alone. While this figure hints at the huge impact of stroke on global development, it doesn't come close to communicating the profound and everyday impact of disability, financial stress, stigma and mental health issues shared by stroke survivors and their families elsewhere on this blog.

Addressing stroke support issues on World Stroke Day 2018

All of this provides good reason to focus our World Stroke Campaign on support for people who have had stroke. 'Support' however means a lot of different things to different people and to help us refine the campaign we asked stroke survivors and caregivers to help us define the focus and the creative approach to this year's World Stroke Day campaign

Workshops with SSO representatives at the Stroke Alliance for Europe (SAFE) conference in Zagreb were complemented by an online questionnaire open to the global SSO network. These gave a picture of what support means to stroke survivors, their families and caregivers and provided input into determining what the Campaign priorities should be in terms of focus and key message. Unsurprisingly perhaps - given the extensive consultation that informed the document - many of the themes from consultation map onto the recovery section of the World Stroke Organization's Global Stroke Bill of Rights.

• Be provided with hope for the best possible recoveryI can make, now and into the future. 
• Receive psychological and emotional support in a form that best meets my needs. 
• Be included in all aspects of society regardless of any disability I may have. 
• Receive support (financial or otherwise)to ensure I am cared for in the longer term. 
• Be supported to return to work and/or other activities I may choose to participate in after my stroke. 
• Get access to formal and informal advocacy to assist me with access to the services I need. 
• Be connected to other stroke survivors and caregivers so I may gain and provide support in my recovery from stroke

The stroke support issues and the level of priority attached to them (Rehabilitation, Hope and Connection were the top three priorities) have been incorporated into the World Stroke Campaign brief and will inform the messaging and content framework for the campaign in 2018. The brief is currently being reviewed by creative agencies who will develop the campaign concept ready to launch in May 2018.

When asked what single message the campaign should communicate the majority of respondents said that the most important thing to communicate is hope for life after stroke. Questionnaire respondents also highlighted the specific needs and issues faced by young stroke survivors and families. We will be working with our members in the young stroke space to gather experiences and provide opportunities to increase awareness of some of the specific challenges (and triumphs!) experienced by young stroke survivors and their families.

Many thanks to all who participated in the consultations and took time to complete the questionnaire. This really is the campaign year for SSOs! And we can assure you that your views have been heard and acted on. We will be keeping you up to date on developments in coming months and look forward to working with our SSO members to highlight the issues that matter most to you.