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

Views on improving the benefit system

Third sector organisations helped participants to get information on benefits and eligibility, and provided support to complete forms.

Most participants wanted clearer and more readily available information on benefits, eligibility rules, and on how to apply.

Several felt that health professionals could have a more proactive role in providing information on benefits. Some suggested that information about support available would be helpful at the point of diagnosis.

A couple of participants would like a fast-tracked process for accessing benefits in the context of a terminal illness.

Some recommended that benefit staff should receive more awareness training on issues that people dealing with a terminal illness diagnosis face. This would help ensure they were treated with empathy.

Having a single point of contact in benefit agencies to avoid repeating sensitive information was suggested.

Participants proposed a range of benefits-related communication channels depending on their needs, circumstances and personal preferences.

Preferences for home visits for benefits-related issues was mentioned by a few.

"When someone, whether it's an accident or an illness, if there was an information pack just automatically given to them, I think that would be very helpful. If you're at the GP and you're seeing them anyway, it would be good to be given something then."

[Participant with terminal illness and their carer]