Social Security Experience Panels - Seldom Heard research programme: end of life - visual summary

This visual summary outlines the main findings of the first wave of research with bereaved people and those at the end of life as part of the ‘Seldom Heard Voices’ research programme.

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Participants did not know they were entitled to some benefits following a terminal illness diagnosis. Some did not look for financial support for some time after their diagnosis.

Some participants did not know that they could be entitled to other benefits.

Some participants said staff from government agencies did not provide them with information on benefits. A few also mentioned DWP staff treated them insensitively.

Participants found benefit application forms difficult to complete on their own because they were long and complicated. They relied on third sector organisations to help them fill in and submit forms.

Some said the timescale for processing applications was too long.

Participants said that travel to attend assessments and appointments can be a challenge when facing a terminal illness.

Some participants had barriers to access adapted vehicles and wheelchairs to attend appointments.

Some did not know what will happen with benefits for carers once someone with a terminal illness dies. Some carers did not know the impact on eligibility for Carers Allowance if receiving a state pension.

"Following the diagnosis, so many practical things kick in that you're just swamped on every level while you're also emotionally stunned. There's no good way or time to give people financial advice when someone's dying, but earlier on would have been better. As it was, we just left the hospital each time with nothing."

[Participant who had lost partner to terminal illness]



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