Accessing benefits with terminal illness

Terminal illness requires people and their families to adapt to new realities posed by their conditions, and to make the most of the time they have remaining. As well as the direct implications of ill-health and death, there can be significant financial costs – loss of income, additional costs of care, and other adaptations.

There is no benefit specifically designed to help people who are terminally ill cope with these financial impacts. However, “Special Rules for Terminal Illness” (SRTI) allow simpler and faster access to benefits designed to help with the additional costs of disability (Disability Living Allowance, Personal Independence Payment, and Attendance Allowance) and those designed to replace the income of those whose ability to work is affected by disability or ill health (Employment and Support Allowance and additional elements of Universal Credit).

The Special Rules acknowledge that the normal process of claiming benefits takes time and can impose burdens unsuitable for those who may be in the closing months of their lives. Some benefits also have qualifying periods where claimants must usually have conditions for months before entitlement begins. The period between applying, undergoing assessments and entitlement being determined can also take months.

‘Terminal illness’ for DWP purposes has been defined in legislation since 1990. A person is regarded as terminally ill if they have a ‘progressive disease’ and as a result their death ‘can reasonably be expected within six months.’ Claimants who meet the definition of terminal illness, or those claiming on their behalf, are advised to get a medical professional to complete a ‘DS1500’ form confirming that they meet the six-month criteria.

In recent years, this definition has come under criticism for being too narrow, making it difficult for some terminally ill people to access benefits. The Scottish Government is removing the six-month requirement for some benefits it has power over and, following calls to do the same, the UK Government is evaluating its approach.

Critics of current policy have also pointed to problems faced by people who live for more than three years after awards are made under the SRTI, whose situation is often reviewed.

This Commons Library Briefing Paper explores the history of the SRTI, how they work in practice, the debate that surrounds them, and looks at recent developments in Scotland and the wider UK.