In recent years there have been significant advances in acute clinical care for people with stroke, meaning that more people now survive stroke. However, long-term care and support for stroke survivors and their carers has not kept up with these improvements in acute care.

Evidence from across Europe shows that stroke survivors continue to have multiple needs some years after their stroke, including social, emotional, financial and work needs, as well as needs for information about their stroke, prognosis and medical support. But many stroke survivors report feeling abandoned by health services once they have been discharged from hospital. Family members and informal caregivers lack support and information, and often experience long-term negative impacts on their emotional wellbeing.

Vascular researchers at ARC South London led by Professor Charles Wolfe, professor of public health at King's College London, have carried out a scoping review to identify current knowledge and understanding of the longer-term, unmet needs of stroke survivors and carers. A public version of the report was launched by the Stroke Alliance for Europe at their European Life after Stroke Forum in Barcelona in March.

Professor Charles Wolfe have the first plenary talk, presenting key findings from the research and discussing next steps for life-after-stroke research.

Many stroke survivors report that their need for support to regain mobility and speech is unmet in the long term and there is a lack of support to cope with the impact of having a stroke, such as sight loss, incontinence and fatigue. However, the report also shows that research into the long-term needs of stroke survivors is thin on the ground and is predominantly orientated towards people’s medical rather than social or societal needs

Professor Charles Wolfe, professor of public health, King's College London

Key issues identified by the researchers in the report include:

  • Too little research into the long-term needs of stroke survivors and their carers
  • Severe lack of consistent information, preparation and support for stroke survivors and carers
  • Community-based rehabilitation therapies and support is falling short of people’s needs
  • Secondary prevention advice and support is failing to help people reduce their risk of having another stroke
  • Many chronic symptoms such as memory and concentration problems or fatigue and mental health are not well understood and lacking in interventions that work
  • Carers’ needs are under-researched and often ignored in service provision

The report makes a series of recommendations to address these problems, including more funding for research that addresses the full range of life-after-stroke issues, not only medical issues, and which tracks changes in stroke survivor and carer needs. It also recommends that all stroke survivors should have at least an annual follow up with a stroke specialist, and access to improved rehabilitation therapies and other specialist support.   

Investigating the longer-term needs of stroke survivors is a research priority in the European Stroke Action Plan. The ARC research team’s full report will be published later in 2023.

Find out more: