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, there are rules in place which allow simpler and faster access to certain benefits:

• Benefits designed to help with the additional costs of disability and ill health – Disability Living Allowance, Personal Independence Payment, and Attendance Allowance.
• Income replacement benefits for people whose ability to work is affected by disability or ill health – Employment and Support Allowance and Universal Credit.

The Special Rules are necessary because 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 Department for Work and Pension (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. 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.

In response, governments which have power over benefits systems across the UK have announced a series of changes, including scrapping the six-month rule:

• The Scottish Government announced in 2018 that it would scrap the six-month requirement for benefits it has power over, replacing it with a broader, non-time-limited definition. This has been used since July 2021 when Scotland’s new extra-costs disability benefits began to be rolled out.
• The UK Government announced in July 2021 that it would be replacing the six-month criteria with a twelve-month end of life approach.
• The Northern Ireland Executive also announced in June 2021 that it would adopt a twelve-month approach.

This Commons Library Briefing Paper explores the history of these rules, how they work in practice, the debate that surrounds them, and recent policy developments across the UK.