Stroke and the benefits system

The Stroke Association has a new campaign to draw attention to the circumstances faced by younger stroke survivors. It’s called Life After Stroke. Stroke has a drastic impact on younger people’s finances and relationships. Working age stroke survivors, already forced to come to terms with the effects of the stroke, may be unable to return to work, are often coping with a fall in income, increased household bills and a benefits system that fails to fully understand the impact of stroke.

Stroke is often thought of as an older person’s issue, yet about a quarter of strokes occur in people of working age. In a moment, that person can be turned from an independent, tax-paying individual to someone who is dependent on the benefits system. The Stroke Association is calling on the Department for Work and Pensions (DWP) to make sure:

  • The benefits system is fair and respects the dignity of stroke survivors and their families.
  • All assessors and DWP staff are trained to understand the impact of stroke and recognise the range of the disabilities it causes.
  • DWP learn from the mistakes that have been made with previous changes to assessment procedures and do not repeat them when the Personal Independence Payment replaces Disability Living Allowance next April.

Stroke is the leading cause of severe adult disability in Scotland and it is inexcusable that the DWP processes appear often to be carried out by undertrained assessors whose view is to restrict support rather than enable help.

Disability Living Allowance is not a gateway to riches, though it is a gateway to such other benefits as a blue badge for car parking. I know from my own experience that the benefits system is particularly labyrinthine for those who, like me, are self-employed, and whose income dries up the moment they are admitted to hospital for a long spell or are undergoing rehabilitation for a long period. It was two years between my stroke and the next occasion on which I earned income from work. In the mean time, you have to learn a new social care/benefits vocabulary; you have to learn the right questions to ask; above all you have to learn how to answer the questions you are asked by the benefits system. This is just bearable if you are reasonably articulate and/or have a supportive family; but, I imagine, completely unbearable if you don’t have these advantages. Stroke survivors tend to be over-optimistic about their physical abilities. I remember being asked if I could walk 50 metres unaided. My instinct was to say “yes”, because I could do so (very slowly and in pain), until my wife pointed out that I could sometimes walk 50 metres but there were many times when I could not, because of pain and utter exhaustion. How do you cram this kind of information into a benefits tick-box? How do you communicate the subtlety of these impacts of stroke without sounding pathetic and self-pitying? As I’ve written before on this blog, it’s impossible to have a stroke and be macho.

Iain Duncan Smith wants to reform and simplify the benefits system – a herculean task, which deserves our support – but the system that emerges must not be over-simplified and dehumanised to the extent that assessment of claimants fails to take account of all the aspects of the condition from which they are suffering. Above all there needs to be genuine, informed human contact between claimant and system at the points of application and review.

About Eric Sinclair

Writer, stroke survivor, whippet owner, music lover, charity volunteer
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