The cruel rule that stopped dying people accessing financial support.
The Campaign
The Motor Neurone Disease Association (MNDA) and Marie Curie campaigned to make it easier for people living with a terminal illness to access fast-track benefits. They sought a change to the Special Rules for Terminal illness from a ‘reasonable expectation of death within 6 months’ to a 12-month approach.
Research showed that doctors could not reliably predict when someone will die.
Dying people endured dehumanising assessments and were being sent on ‘back to work’ coaching. Even then, they were not guaranteed the benefits they needed. Previously, 10 people died every day waiting for a decision on their benefit application and 100 people a month were rejected and then died within six months.
Campaigners meeting with Jeremy Vine and MPs at an APPG event
This campaign had people at its heart. Too many people had to fight a broken benefits system when they were dying, or face financial hardship in their final days when they should have been making memories with the people they love. Being shortlisted means an awful lot, as it is recognition that we have served our beneficiaries as best we can so dying people in future can make the most of the life they have left to live.”
Campaigners meeting with Jeremy Vine and MPs at an APPG event
This campaign had people at its heart. Too many people had to fight a broken benefits system when they were dying, or face financial hardship in their final days when they should have been making memories with the people they love. Being shortlisted means an awful lot, as it is recognition that we have served our beneficiaries as best we can so dying people in future can make the most of the life they have left to live.”
The Change
The campaign combined personal testimony, public affairs, supporter engagement and PR to scrap the six-month rule, ensuring people spent their final days with those they loved, rather than fighting poverty and the system.
The Scottish Government announced it would change the law early in the campaign.
On 30 June 2021, the Government in Northern Ireland announced it would scrap the six-month rule, marking the biggest break of parity in law with Westminster in the history of devolution.
On 8 July, the Department for Work and Pensions (DWP) announced it would scrap the six-month rule for England and Wales.
The Future
Changes being phased in across benefits and primary legislation takes time, so the campaign will continue to monitor the situation carefully.
There will be an ongoing review of the impact of rule changes on the people living with terminal illness, and they will check whether clinicians can recommend that their patients have access to the Special Rules with ease.
Finally, there will be a detailed response to the Health and Disability Government Green Paper about ending the maximum three-year award length to Special Rules claims, which was not addressed in this campaign.
Who else was involved?
Many with first-hand experience of the issues campaigned alongside MNDA and Marie Curie. They spoke to the press, petitioned MPs and engaged directly with parliamentarians at roundtable events, to ensure others wouldn’t go through what they had to.
