Long-term needs of stroke survivors and their carers

The long-term impact of stroke varies from person to person and can include physical disability, communication problems, incontinence, sight problems, clinical depression and anxiety, seizures, spatial neglect, cognitive impairment, chronic pain and chronic fatigue. Stroke survivors and their carers can find it difficult to plan and integrate support from a wide variety of health professionals.

Stroke survivors also face the challenge of adjusting to life after stroke – they may face employment challenges and money worries; their relationships may be impacted; social life and hobbies altered; and their expectations about how their life will be may have to be fundamentally re-thought.

Stroke survivors are at greater risk of having another stroke, so advice and support to reduce their risk is vitally important.

SAFE recently published a report on the long-term needs of stroke survivors.

The report found that

  • There is too little research into the long-term needs of stroke survivors and their carers, exacerbated by a lack of common ways of understanding, measuring and meeting needs. This means that stroke survivors are being left with a range of often very debilitating unmet needs.
  • There is a severe lack of consistent information, preparation and support for stroke survivors and their carers to enable them to understand and best tackle their long-term needs over time.
  • The provision of community-based rehabilitation therapies and support is falling far 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, poorly researched and lacking in interventions that work.
  • Carers’ needs are under-researched and often ignored in service provision.