Downton Abbey star calls on government to scrap 'cruel benefits system' for terminally ill

Downton Abbey star Jim Carter, Marie Curie and the Motor Neurone Disease Association (MNDA) are calling on the government to scrap the six-month rule making it easier for terminally ill people to get financial support they desperately need.

It is estimated that nearly 2,000 terminally ill people have died in the last six months without financial support. Currently, terminally ill people can only get quick access if they are told they have six months or less to live.

Jim Carter who is an ambassador to Marie Curie said: “People are being forced to prove that they have six months left to live or face long delays in getting access to benefits. When they do get benefits, they can face stressful reassessment, even though they are dying.

“Back in August, we delivered a petition to Downing Street signed by over 55,000 people, demanding change to the cruel benefits system that can make all the difference to people’s end of life experience. Little real progress has been made since.”

Marie Curie and the Motor Neurone Disease Association are calling for an overhaul of the current system and replace it with a fairer approach based on trusting the judgement of doctors and other clinicians who know their patients best,” said Mr Carter.

’What was I supposed to do? Tell him to choke quietly as I’m waiting on the phone to get £50 a week?‘

Jo Lynton spent months trying to claim benefits for her husband Mark who died in July 2019 from MND.

Ms Lynton said: “My husband was ill for 22 weeks and 6 days and that was all. I spent 15 weeks fighting to get some help and the benefits we were entitled to and I didn’t manage to do it. It was very frustrating, very upsetting and emotionally it was a very difficult time.

“I was his full-time carer 24 hours a day, seven days a week. I couldn’t leave the house. I couldn’t go shopping. I did everything for him. I showered him, shaved him, washed him, dressed him, gave him a drink, fed him, gave him his medication.

“Claiming benefits was horrendous. We were entitled to claim income support of £50 a week and council tax benefits. I couldn’t get either of those because I couldn’t get anybody from Universal Credit to answer the phone.

“We were on hold for 50-60 minutes and I couldn’t be on hold for 50 or 60 minutes because my husband could choke on his own saliva so what was I supposed to do? Tell him to choke quietly as I’m waiting on the phone to get £50 a week?

“I would just sit and cry because there was nothing I could do. We needed the support and we just couldn’t get it and there was nothing I could do about it.

“It made me really, really angry because me and my husband have both worked all our lives. We’ve paid in to the system and the one time we needed help, we couldn’t get it.”

Sally Light, chief executive of the MND Association said: “The announcement of the review into access to benefits for people with terminal illness, including MND, gave us some optimism that things would change. But, six months on, we are no further forward and people are still dying without the financial support they need and are entitled to.

“We need the government to act on its promise now. Any further delay will only cause further frustration, stress and fear for people already facing the most difficult time of their life.”

’The new government should now find it’s heart’

To help families and loved ones, Marie Curie have launched a terminal illness benefits calculator. Benefits calculators can be useful for people who have little to no knowledge about benefits, as the calculations about which benefits they could receive, and how much, are worked out for them.

The new benefit calculator can be accessed at www.mariecurie.org.uk/help/support/benefits-entitlements. For those with no internet access, Marie Curie support line officers will be able to guide callers through the calculator.

Matthew Reed, chief executive of Marie Curie said: “The government’s own figures suggest that ten people a day have died while waiting for PIP in the six months since the DWP announced a review. Tragically, we have not seen any notable progress and many more will no doubt be struggling to access other benefits such as Universal Credit.

“And while we have seen personnel changes at the DWP, it is now a new year, with a new government, which has a clear majority and, therefore, no excuse not to act fast to stop ten more people dying everyday without the support they need. It’s time now to get this done.

“The law is already set to be changed in Scotland this year, so anyone diagnosed with a terminal illness can get fast access to devolved benefits. The new government should now find its heart and follow suit – dying people don’t have another six months to wait.”

To help dying people and their loved ones get the support they need, join the #Scrap6Months campaign by clicking here

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