Petition Fast-track access to benefits for terminally ill as soon as diagnosed

Hearing that your illness cannot be cured can be a frightening and devastating experience. The Government wants to do all it can to alleviate the pressures on those nearing the end of their lives, and on their families.

The main way that the Department for Work and Pensions (DWP) does this is through special benefit rules, sometimes referred to as “the Special Rules”. These enable people who are nearing the end of their lives to get faster, easier access to some benefits, without needing a medical assessment and usually at the highest rate of payment. For many years, the rules have applied to people who have 6 months or less to live and now they are being changed so they apply to people who have 12 months or less to live.

These changes are well underway. From 4 April 2022, the Government changed eligibility for Special Rules access to Universal Credit (UC) and Employment and Support Allowance (ESA). The Social Security (Special Rules for End of Life) Bill, currently being debated in Parliament, aims to make similar changes to Personal Independence Payment (PIP), Disability Living Allowance (DLA) and Attendance Allowance (AA).

Once the change has been rolled out across all benefits, each year, between 30,000 and 60,000 people may benefit from these changes to the Special Rules. This will mean that the Government is spending approximately £115 million a year more on people who are nearing the end of their lives.

The Government has no plans to extend the eligibility criteria for the Special Rules for End of Life beyond 12 months.

The Government’s decision to change eligibility to a 12-month, end of life approach, rather than a more open-ended approach, is a balanced decision which makes a positive change with justified reasoning.

Firstly, an extensive evaluation into how the benefit system supports people nearing the end of their life provided a clear indication that the old 6-month eligibility criteria should be extended to 12-months.

Secondly, the new criteria aligns with the NHS definition of end of life. The NHS considers people to be approaching the end of their lives when they are likely to die within the next 12 months. Clinicians are encouraged to identify patients who have reached this stage of their life and use a holistic approach to consider the support that their patient may require at this point. The alignment of the definition across welfare and health services allows clinicians to include conversations about financial support in wider conversations about what matters most to their patient, thus being more responsive to their needs.

Finally, the Government believes that rather than simplifying the process for clinicians and claimants alike, a more open-ended approach to the Special Rules is likely to increase the burden on clinicians and may also introduce the risk of inconsistent awards for claimants. The new 12-month end of life approach means that clinicians are supported with a straightforward and simple definition which ensures priority continues to be given to those who are most in need as they are approaching death.

The Government does recognise that there will be individuals who may not meet the 12-month Special Rules criteria, but who have severe, lifelong conditions that will not improve and require extra financial support to live independently.  People with the most severe conditions and lifelong conditions who claim benefits have the Severe Conditions criteria applied to their claim, which stops unnecessary reassessments. And the Government is currently working closely with charities and stakeholders to test an approach for a new Severe Disability Group (SDG), which would allow these people to benefit from a simplified process which would not involve a medical assessment. We are still considering how this offer could work and interact with special rules claims.

If someone registers a normal rules claim, once their claim is processed and if they qualify for the benefit claimed, they would not lose out financially for the period they waited for their claim to be processed.

All eligible benefit claims are paid as fast as possible. For PIP, Special Rules claims in Great Britain currently take 3 working days to clear for new claims and 5 working days for a reassessment. By extending the eligibility criteria of the Special Rules to include all individuals in their final year of life, we aim to continue to process claims in a fast-tracked way despite increasing the numbers of claims via this route.

Department for Work and Pensions