Marie Curie calls for next Government to waste no time in fixing benefits for dying people

A new report  2   from Marie Curie published today shows that 43% of those caring for people at the end of life say they struggle financially. The total cost of living with a terminal illness in the UK can be between £12,000 and £16,000 a year. The report shows that 60% of people living with a terminal illness rely on benefits as their main source of income yet more than 17,000 people in Great Britain have died waiting for a decision on a PIP claim since 2013. 

Actor and Marie Curie Ambassador Jim Carter said: “It is four months since the All-Party Parliamentary group for Terminal Illness found that the benefits system for terminally ill people is not fit for purpose. 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. Little real progress has been made since. 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.  Marie Curie and the Motor Neurone Disease Association are calling for whoever wins the general election to overhaul 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.”  

Jo Lynton spent months trying to claim benefits for her husband Mark who died in July 2019. She 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. 
 
“Mark didn’t have a quality of life from soon after he was diagnosed. He had to stop work before he got the diagnosis. It was so rapid.  He found it difficult to eat. He couldn’t swallow. He struggled to breathe. He couldn’t get up and down stairs. He lost the use of his arms so quickly. He lost the ability to speak. It was so rapid and in some ways that’s good because motor neurone can go on for years. 
 
“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? 

“It didn’t affect Mark’s day to day life because he didn’t know, but 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.” 

Matthew Reed, Chief Executive of Marie Curie, said: “As many as 1400 people could have died waiting for benefits since the review was announced in the summer, and as every day passes countless more people will be let down by the benefits system.  We’re very disappointed that none of the major UK parties have included benefits reform for dying people in their manifestos.  

“We’re urging the public to ask all their local candidates to pledge their support for our “Scrap six months” campaign.  The law is already set to be changed in Scotland from 2020, so anyone diagnosed with a terminal illness can get fast access to devolved benefits.  The next UK government must follow suit – dying people don’t have time to wait.”   

“Our new report, The Cost of Dying, shows how difficult life can be for families living with terminal illness.  Marie Curie has launched a new campaign to open up the conversation around death, dying and bereavement. We have been caring for people who are dying and their families for over 70 years and we know that talking about death and dying is so important. If we talk about death, plan and share our wishes with our loved ones then we are more likely to have a good end of life experience which in turn lightens the load on those we leave behind and eases the bereavement process.”