A WOMAN who spent months battling to claim benefits on her dying husband’s behalf has called on the next Government to change the law to make it easier for those who are terminally ill to get the support they need.
Jo Lynton, from Bromsgrove, is backing a campaign by Marie Curie for whichever party takes power this week to make the issue a priority.
Jo, whose husband Mark passed away in July after losing his motor neurone disease fight, said he was ill for almost 23 weeks and she spent 15 weeks trying in vain to get help and benefits to support them.
“It was very frustrating, very upsetting and emotionally it was a very difficult time.”
Mark had to stop work prior to the diagnosis and soon after his quality of life rapidly deteriorated – he found it difficult to eat, could not swallow, struggled to breathe and could not 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.”
Jo, who was Mark’s full-time carer, described claiming benefits as ‘horrendous’.
They were entitled to £50-a-week income support and council tax benefits but could not get either as every time she called Universal Credit she would be on hold for between 50 and 60 minutes.
She was unable to leave Mark as he could have choked on his own saliva.
Figures show more than 17,000 people in the UK have died waiting for PIP benefits claim decision since 2013.
Four months ago the treatment of terminally ill people by the benefits system was condemned in a damning Parliamentary report and in August Marie Curie delivered a 55,000-strong petition to Downing Street demanding change.
Jo added: “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.”
Marie Curie ambassador Jim Carter said: “We 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.”
Prior to the election Sajid Javid who was re-elected this morning said: “I want to make sure people nearing the end of their lives receive the benefits support they need, as quickly and easily as possible.”
He added claims were fast-tracked for people who were terminally ill, offering a simplified application process with no face-to-face assessments to speed it along but he recognised different people nearing the end of their lives needed confidence that the system worked for them.
“That is why Conservatives in Government announced over the summer that they will work to thoroughly evaluate the current process, including working with a wide range of charities, to ensure that they continue to improve the process to support people.
“People are not asked to provide evidence of their life expectancy, so terminally ill claimants may well receive support for longer than six months.
“For example, with Personal Independence Payments, around 40 per cent of terminally ill claimants remain on benefits for longer than a year.
“We take a pragmatic, person-centred approach to these decisions.
“Terminally ill claimants always receive the higher rates of Employment and Support Allowance and Universal Credit and there is no requirement for them to search for work.
“These rules were first introduced in 1990 and continued under governments of various parties since then.
“Conservative ministers have regular conversations with the medical profession, to ensure that people are given an absolute guarantee of the financial support that they and their families need and that their claims are handled swiftly to reduce the burden on individuals.”