In November 2021, the BBC Shared Data Unit reported around 100 people who were denied fast-tracked disability benefits for terminal illness had died challenging the decision since 2018.
Under rules in effect at the time, patients could access benefits more quickly if their clinician said they had six months or less to live.
In July 2021 the government had promised to extend that to 12 months. Critics said it did not go far enough.
"Our priority is dealing with people's claims quickly and compassionately," the Department for Work and Pensions (DWP) said.
Figures released to the BBC Shared Data Unit under the Freedom of Information Act had previously revealed more than 1,000 more people across the UK had died while formally challenging their benefit decision.
In July 2021 we had also reported how the DWP had held at least 268 internal reviews into cases where people claiming benefits died or came to serious harm since February 2012. The Labour Party then called for an "urgent independent investigation".
The data and background methodology released to partners are available here:
- Helena Reynolds (she/her), from Essex, who was terminally ill with intestinal failure
- Michelle McCluskey (she/her), whose mother Christine (pictured above. She/her) from Dundee was denied PIP under special rules after a terminal lung cancer diagnosis
- Dr Sam Royston (he/him), director of policy and research at the end of life charity, Marie Curie
- Susie Rabin (she/her), head of policy and campaigns at the Motor Neurone Disease Association charity
- Dr Catherine Millington-Sanders (she/her), clinical lead for palliative and end of life care for the Royal College of GPs
- Paul Alexander (he/him), policy manager at disability equality charity Scope
- Mrs Madeleine Moon (she/her), former Labour MP for Bridgend, who previously sponsored a Private Members' Bill in 2018 which proposed to remove the six-month end-of-life definition in the special rules and replace it with a clinical judgment made by an appropriate health professional
- University of York Professor of Law Charlotte O'Brien (she/her), a specialist in welfare law
- Richard Meade (he/him), head of policy and public affairs at end of life charity Marie Curie in Scotland
- The Department for Work and Pensions
The Shared Data Unit makes data journalism available to the wider news industry as part of the BBC Local News Partnership. Stories written by partners based on this research included:
- Aberdeen Press and Journal: Outrage over benefits system as terminally ill woman told to resubmit forms - then died the same day 8 November 2021
- Aberdeen Press and Journal (in print): Call for easier access to benefits support for terminally ill claimants 8 November 2021
- Berkshire Live: Hundreds of terminally ill patients in Berkshire applied for fast-track access to benefits 15 November 2021
- Bolton Journal (in print): REVEALED: Over 350 terminal patients hit by 'cruel and arbitrary' benefits rule 8 November 2021
- The Bolton News: More than 350 terminal patients in Bolton hit by 'cruel and arbitrary' benefits rule 8 November 2021
- Bristol Live: Hundreds of terminally ill patients in Bristol applied for fast-track access to benefits 8 November 2021
- Bristol Post: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Bury Times: More than 240 Bury terminal patients hit by 'cruel and arbitrary' benefits rule 8 November 2021
- Cambridgeshire Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Cambridgeshire Live: DWP: All the Universal Credit changes to expect from now until 2026 - including £1,000 increase 29 November 2021
- Cheshire Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Coventry Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Devon Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Free Radio (Birmingham): Benefits system for terminally ill in need of urgent reform 8 November 2021
- Get Surrey: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Gloucestershire Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Greatest Hits Radio Bucks, Beds and Herts: Benefits system for terminally ill in need of urgent reform 8 November 2021
- Greatest Hits Radio Essex (and bulletins): Government urged to overhaul 'overly complex' terminal illness benefits system 8 November 2021
- Greatest Hits Radio Norfolk (and bulletins): Benefits system for terminally ill in need of urgent reform 8 November 2021
- Greatest Hits Radio Norfolk (and bulletins): East Anglian MP presses Government to reform benefits system for terminally ill 9 November 2021
- Greatest Hits Radio Suffolk (and bulletins): Benefits system for terminally ill in need of urgent reform 8 November 2021
- Grimsby Telegraph: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Grimsby Telegraph (Grimsby, in print): Call for changes to end-of-life benefits used by many across our town; PROCESS SLAMMED BY CHARITIES AS 'OVERLY COMPLEX AND STRESSFUL' 8 November 2021
- Grimsby Telegraph (northern Lincolnshire, in print): Call for changes to end-of-life benefits used by hundreds of local patients; UNDER CURRENT RULES, PEOPLE CAN ACCESS SUPPORT QUICKLY AND AT A HIGHER RATE 15 November 2021
- Herts Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Hull Daily Mail: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- In Your Area: DWP: 100 people have died waiting for benefits pay-out after terminal diagnosis 10 November 2021
- Kent Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Lancashire Telegraph: East Lancashire: Over 500 terminal patients hit by 'cruel and arbitrary' benefit rule 8 November 2021
- Lancs Live: DWP: 100 people died waiting for benefits after terminal illness diagnosis 9 November 2021
- Leicestershire Live: Fears many terminally-ill missed out on benefits after hundreds in county applied 8 November 2021
- Lincolnshire Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- My London: Terminally ill Londoners forced to wait for benefits with 6 months to live 8 November 2021
- North Wales Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Nottingham Post: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Oban Times: Terminally-ill benefits ‘overly complex and stressful’ 29 November 2021
- Oxfordshire Live: Hundreds of terminally ill patients in Oxfordshire applied for fast-track access to benefits 8 November 2021
- Planet Radio: Benefits system for terminally ill in need of urgent reform 8 November 2021
- Plymouth Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Plymouth Live: Calls for urgent reforms to the benefits system for terminally ill patients 9 November 2021
- South London Press: Thousands of Londoners forced to apply for Personal Independence Payments (PIP) when they have terminal illnesses 8 November 2021
- South London Press: Terminally ill patients missing out on vital payments 12 November 2021
- The Sentinel, Stoke (in print): End-of-life benefits 'need urgent action' 11 November 2021
- Suffolk News: Urgent reform needed for 'degrading' benefits system for people living with terminal illnesses, charities say 8 November 2021
- Teesside Live: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
- Wales Online: 100 people have died waiting for DWP to pay benefits after terminal diagnosis 8 November 2021
The story featured on television on the BBC News Channel and it was also reported by BBC radio stations covering Northern Ireland, London, the West Midlands, Cumbria, Three Counties, Wiltshire and The Solent.
- The Express: DWP confirms when benefits changes offering fast-tracked access will come into effect 9 November 2021