Government urged to overhaul 'overly complex' terminal illness benefits system
The number of people who applied for support payments through the special route for people who are terminally ill in Essex has halved in the last year.
Last updated 8th Nov 2021
There is an urgent need to reform the current terminal illness benefits system, according to affected families and end-of-life charities.
New data shows that the number of people applying for Personal Independence Payments (PIP) in Essex through the special route for people with terminal illnesses has fallen from 695 in 2019-20 to 350, nearly half, in 2020-21.
This figure is replicated nationally as well, where around six thousand fewer people applied for PIP in 2020-21, than the period last year.
The PIP is usually paid to people who have both long-term physical or mental health condition or disability, and difficulty doing certain everyday tasks or getting around because of your condition. It goes towards covering any living and care costs that claimants have to meet.
But for some people who have been diagnosed with terminal illness, the process of applying for and receiving these support payments have brought their own challenges.
Helena Reynolds, from Heybridge, was given a lifetime Disability Living Allowance in 1991, after being diagnosed as terminally ill with Crohn's disease. In 2019, she received a massive shock, when after an assessment, the Department of Work and Pensions decided that the PIP given to her was going to reduce, because 'she didn't look like she was terminally ill'.
'She didn't look like she was terminally ill'
In order to correct this, she had to appeal this decision. She explains the stress the process caused her: "You're awake all night thinking about the what ifs. What if I don't get the decision overturned, what if I don't get any help? There were some nights where I went to bed thinking don't let me wake up in the morning, I can't go through another day like this."
The person who undertook the assessment that led to her benefits getting cut was a mental health professional, who did not know the ins and outs of her condition. When Ms Reynolds asked if the assessor wanted to see the notes from her doctors and consultants, she says he refused. The amount was reinstated after 18 months, this year after she was assessed on the standard PIP route.
For people to be eligible for PIP under the Special Rules for Terminal Illness, the applicant must be diagnosed as having only six months to live. But not everyone that has such an ultimatum has been able to get access to this support.
Mark Hughes from Southend, was diagnosed as having a rare kind of neuro-endocrine cancer, and in 2010 was told he only had six months to live.
He received a form to fill in, which he describes as the size of War and Peace by Leo Tolstoy. After spending several months filling that and several other forms out, he was told his claim was denied.
He found that it was on the basis of the home assessment that was undertaken: "I was asked silly questions like can you walk 20 metres, can you cook, can you bathe yourself? And I kept saying yes. Little did I know that answering yes meant that I was getting zero points for all those questions on my application."
His condition is one that is not necessarily visible. As a result he was told he did not meet the criteria for PIP support, even after his clinician intervened and wrote to the Department of Work and Pensions that he had only six months to live.
Thankfully, his prognosis improved and he was given more time to live but his case is still terminal. He was able to access the appropriate benefits only after a charity had intervened on his behalf.
The level of bureaucracy involved is something that Mark Jackson, Policy Manager at end-of-life charity Marie Curie talks about: "The Government must make it easier for people to claim these benefits. Its unacceptable that people with little time left to live are subjected to the bureaucracy, the assessments, the multiple forms they have to fill, all in the precious time they have left."
He adds that the low rates of claimants through the Special Rules for Terminal Illness category is worrying: " The number of people living with terminal illness has not gone down so a reduction in the number of people claiming under this scheme of serious concern. What needs to happen is that the system must be made much more simple, straightforward and easy to access."
The Government for their part, have committed to extending their definition of terminal illness from six months to live to 12 months. But no timescale has been determined for when these changes will come into effect. Both Mr. Hughes and Ms Reynolds are asking for the independent assessment to be scrapped and the doctor or consultant's notes be given more value.
" Nearly 1 in 3 of the Department of Work and Pension's initial denials are overturned on referral and 7 out of 10 are overturned when they are taken to a court", says Mr Jackson.
Worryingly, data from the Local Democracy Reporting Service also showed that more than 100 people with terminal illnesses had died in the last three years while they were waiting for the department to overturn the original decision to deny them the payments.
Other changes that people are calling for include the scrapping of the reassessment of a claimants case every three years.
Mr Jackson said: "These conditions will not improve or get better, that is the nature of terminal illness. It is nonsense that people have to reapply and potentially lose their benefits, if they are lucky enough to survive for those three years."
Ms Reynolds is calling on the Department for Work and Pensions to replicate the one-stop system that is in place to record deaths, for people who are reporting and claiming for terminal illness benefits. She says by doing so tax-payer money can be saved and claimants need not fill in numerous forms that ask for the same details. Mr Hughes says there should be a track and trace system for the department to know keep tabs on a claimants case and ensure better communication within the system where he claims "the right hand doesn't know what the left hand is doing".
The nightmare for Mr Hughes reappeared in 2019 when he was sent a new application form and upon inspection of his bank account, found that the benefits payments had stopped. He had to go through the entire process of forms and assessments again before it was reinstated.
He says it has left him constantly uneasy. "Whenever a brown envelope comes through the door, my blood pressure shoots up", he adds.
Ms Reynolds says: " We are dying, we know we're dying. All we are asking is for some dignity and some support when we need it the most".
A statement from the Department of Work and Pensions
A DWP spokesperson said: “Terminal illness is devastating, and our priority is dealing with people’s claims quickly and compassionately.
“Those nearing the end of their lives can get fast-track access to the benefits system, with the majority receiving the highest possible award and paid within three days of making a claim.
“We will be extending the current six-month end of life rule to 12-months so more people can get the vital support they need.”
They added that:
• It is incorrect to suggest the number of applications for PIP under SRTI from 2018-21 declined year on year and non-SRTI applications did not. In 2018, 2019, 2020 and in 2021 to July (the latest available data) the proportion of PIP registrations under SRTI has remained at 3% of the total PIP registrations.
• It is not right to compare the number of applications for PIP under the SRTI taken into Mandatory Consideration in 2020-21 to previous years without taking into account Covid support from the Government which may have led to reduced levels of disputed cases.
• There is no evidence to suggest applications are deterred from appealing a decision on Mandatory Reconsideration due to the MR process. The Department announced on July 8 2021 that it will be extending the current six-month rule for determining who can claim benefits under SRTI to 12-months, in line with NHS definition of end of life.
• The average time from registration to decision for a claimant under the SRTI is 3 working days for new claims and 4 working days for DLA to PIP reassessment claims.
• PIP claimants who make a claim through SRTI are not required to undergo an assessment.
• A DS1500 form asks a clinician for information on a patient’s condition and planned treatment. It does not require a prognosis.