Ruth Hunt presents an open letter by JILL FENNELL whose terminally ill partner is suffering from the Tories’ brutal cuts
WHEN a couple in their early 60s — Mark, a selfemployed musician, and his partner Jill, a senior administration officer — sat in Guy’s Hospital in London and heard the devastating news that the mouth cancer Mark had been suffering from was now terminal and that he wasn’t expected to live past six months, it focused their minds on what was important.
They wanted to make the time left precious for each other. Jill wanted to ensure the last months were comfortable for Mark.
They had no idea of what they were about to deal with when the Macmillan nurse advised them to apply for fast-track Employment Support Allowance (ESA).
The fact that they had to wrangle with this dreadful, cruel system from the Department for Work and Pensions is bad enough.
However, their case is by no means unique as Mark and Jill demonstrated in an open letter that was widely shared on social media.
“My much loved partner Mark of 23 years is dying from mouth cancer,” Jill writes in her letter. “No cancer is good but this form is particularly cruel, restricting his ability to eat and speak.
“He lives in a universal credit area and words totally fail as to how barbaric and inhuman this system is.
“This is the reality for many of our most vulnerable people in society and Mark wanted to tell his story to reveal the shocking truth that lies behind Theresa May’s ‘strong and stable” social care plans.
“Mark’s story began when he was diagnosed with terminal cancer by a Macmillan nurse at Guy’s Hospital.
“She told him to apply for fast-track Employment Support Allowance (ESA) as he was not expected to live beyond six months.
“Due to the postcode lottery it turned out he should have applied for universal credit.
“This took weeks to reveal itself and Mark had to live on very little money, as he was self-employed but unable to work.
“Having struggled to complete the 60 pages of the ESA form, his efforts were wasted. Moreover ESA can be backdated to the date of diagnosis but not universal credit.
“By the time Mark was able to start over with his universal credit claim his health had severely deteriorated and his concentration levels had become poor due to the high levels of morphine medication. He sat next to me at the computer while I completed the form.
“In his condition, he was a bit befuddled with the incredible levels of detail required, but without completing all the mandatory boxes you can’t progress through the form.
“In short, the process is completely unsuitable for the physical and mental states of the people who have to use the system.
“In addition, you only have limited time to complete the form before it shuts down and you are required to start over.
“The system then requires that the claimant is ‘verified’ by Experian. According to Experian, Mark doesn’t exist, although he is very much with me as I write this story.
“Several ‘helpline advisers’ did not help, simply parroting the statement that they did not deal with online applications, although this was the number given on the universal credit website.
“Mark was asked to take his identity documents to a jobcentre, quite a trial for a man who had not been out, or indeed, off his bed for well over a fortnight, stick thin and sleeping most of the time.
“I was told that without verification his claim could not go ahead.
“After verification of his terminal illness had taken place, I thought all was well and he had fast-tracked his claim. How wrong I was.
“The following day, Mark was told his claim could only be processed once he had completed a to-do task and that, once again, he needed to verify his ID online.
“The first payment, if accepted, will be on June 24, months after he needed the money to live his final months in some level of comfort and dignity.
“It is shameful — the hallmark of an advanced democracy is in how it treats its vulnerable people and I have been let down by the system.
“But Mark’s story doesn’t stop there. Mark subsequently found out he has to have a fitness to work telephone interview.
“I called the universal credit work coach to ask if she was aware he is terminally ill and has difficulty speaking as he has mouth cancer. She said she did, but said it still had to be done.
“I cannot think of any words that express my contempt for her callous and emotionally bankrupt approach to Mark’s predicament. I have spoken with others about his experiences and it seems this is the norm in our ‘civilised society.’
Theresa May’s government is presently rolling out universal credit across Britain. God help those that are desperately ill with no one to look after and support them through this Kafkaesque nightmare of a system, which makes it virtually impossible for vulnerable people to live their final months without misery.
“If Mark was on his own he would be dying in utter desperation and starving to death as foodbanks don’t do home delivery.
“Universal credit is universally inhumane. An animal receives better treatment than humans under Theresa May’s strong and stable care system.”
Jill has sent this letter to her local parliamentary candidates standing in today’s general election, as well as news outlets with the aim that nobody else would have to suffer in the same way.
The novelist Debi Alper shared the letter on social media saying: “I know it would mean so much to [Jill] and Mark to think that the horror they’ve gone through is causing a tidal wave of revulsion and calls for a more humane system.”