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The Social Security (Special Rules for End of Life) Bill [HL] 2022-23 would amend the definition of terminal illness used by the Department for Work and Pension (DWP) and medical professional to fast-track certain benefit claims for people nearing the end of life.

The definition of end of life in existing legislation is based on the claimant having a life expectancy of six months or less. The Bill would replace this with a twelve-month definition.

Benefits for terminally ill people

There is no benefit specifically designed to help people cope with the financial impacts of terminal illness. However, there are “Special Rules” the DWP can use to fast-track access to disability benefits where people have a progressive disease, and a medical professional believes their death can reasonably be expected within six months. The benefits are:

Criticism of the six-month rule

This six-month rule has been defined in legislation since 1990. However, it has long come under criticism for being too narrow and for making it difficult for some terminally ill people to access benefits promptly, particularly those with variable conditions where it is difficult for medical professionals to make a clear prognosis.

In recent years there have been campaigns for reform, and the Scottish Government has chosen to adopt an open-ended definition of terminal illness for the devolved extra-costs benefits it is currently introducing.

DWP evaluation of the terminal illness rules

In July 2019, the then Work and Pensions Secretary, Amber Rudd, launched an  evaluation of the terminal illness rules. This considered evidence from claimants, medical professionals and other stakeholders, concluding that the DWP should adopt a twelve-month definition of end of life. This was the most favoured option amongst medical professionals responding to the DWP evaluation and would align the DWP’s definition with existing end of life practices used in the NHS.

Implementing the changes

The definitions of terminal illness used for income replacement benefits (Universal Credit and ESA) are in secondary legislation, allowing the Government to adopt the new twelve-month end of life definition for these benefits through new regulations from April 2022.

For extra-costs benefits, the definition is in primary legislation, requiring a new Act to make the necessary amendments.

Currently, the new definition is already in use for income replacement benefits, but the old six-month rule is still in place for extra-costs benefits. The Social Security (Special Rules for End of Life) Bill will amend primary legislation and align practice across all the relevant benefits.

How many more claims are expected? And at what cost?

The DWP estimates that 30,000 to 60,000 additional Special Rules awards of extra-costs benefits will be made each year in England and Wales after extending the definition to twelve months.

The central estimate is that 40,000 additional claims will be made each year, costing the Government £112.4 million by 2026/27. This is as well as around 5,000 additional annual income-replacement benefit claims, costing £4.6 million by 2026/27.

If the Bill is passed, following Royal Assent, the relevant Secretary of State will need to make regulations for the substantial provisions to come into force. The Government has not announced a target date, but the Bill’s Impact Assessment says the “change is expected to come into force in April 2023.”

Northern Ireland and Scotland

The Bill applies in England, Wales, and Scotland. However, the Scottish Government legislated in 2018 for an open-ended definition to be used for new extra-costs benefits it is currently rolling out. 

The Social Security (Terminal Illness) Act (Northern Ireland) 2022 has already received Royal Assent in Northern Ireland, applying the new twelve-month end of life rules across all relevant benefits from April 2022.

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