Thousands of sick and dying people are potentially being denied benefits under a strict government rule that says those with terminal illnesses must have six months or less to live in order to claim.
The government is under mounting pressure to scrap the controversial life expectancy rule used to decide whether terminally ill people are fast-tracked for welfare support such as Universal Credit and Personal Independence Payments (PIP).
Doctors say it is impossible to have this level of clinical certainty over a patient’s prognosis and the “unfair” system is having a “significant impact” on people who are gravely ill.
As a result, charities say potentially hundreds or even thousands of people with a terminal illness are missing out on fast-track benefits under Universal Credit.
The numbers potentially affected could stretch to many thousands as new figures, revealed exclusively by HuffPost UK, show more than 17,000 people with terminal illnesses have applied for Universal Credit.
The fast-track access can be crucial for people with terminal illnesses who have only weeks or months to live and are in need of urgent financial support.
Doctors have backed the calls for change, saying it is clinically difficult to give an accurate diagnosis of life expectancy and not in the best interests of patients.
Dr Catherine Millington-Sanders, the Marie Curie end of life lead at the Royal College of General Practitioners, told HuffPost UK: “In this era of advancing treatments in medicine, it’s much more difficult to say to someone I’m 100% sure that you are going to die in the next six months.
“The only thing we can be certain of from a clinical perspective is what the diagnosis is, how this impacts their life and if they will benefit from support. The system is unfair – there needs to be individualisation there.”
Under current legislation, people who have a terminal diagnosis must apply for PIP or Universal Credit under a “Special Rules” scheme, which means benefits are fast-tracked and paid at the highest rate.
But in order to qualify for “Special Rules” support, people must meet the government’s strict definition of terminal illness under the Welfare Reform Act – as a progressive disease or health condition which means the person is not expected to live for more than six months.
The law requires a clinician to complete and sign a detailed DS1500 form to say a person’s life expectancy is six months or less in order for them to get fast-tracked access.
However with some terminal conditions, such as cancer, motor neurone disease and heart disease, doctors say it is difficult to pinpoint accurately how long people may survive.
Marie Curie and the Motor Neurone Disease Association are concerned people diagnosed with a terminal illness are slipping through the cracks and the charities have called for the six month rule to be scrapped.
“The problem with the whole system is that the Department of Work and Pensions (DWP) starts from a position of disbelief,” said Scott Sinclair, head of policy and public affairs at terminal illness charity Marie Curie.
“They are constantly looking at how they can potentially disprove someone’s claim and when that comes to terminal illness, you are seeing people who are essentially administrators for the DWP overruling doctors’ assessments that someone has six months to live.”
The charities have called for doctors to take the final decision on what constitutes a terminal diagnosis rather than the strict definition under the Welfare Reform Act.
“The core of our argument with the DWP is this legal definition of terminal illness was formed in 1990 and it’s been 29 years of medical advancements and our understanding of how people die has changed drastically,” said Sinclair.
“The DWP need to step into the 21st century with this because they are basing this system on a rule brought in in 1990 and actually at that time it had no clinical input – it was something MPs came up with basically.”
The charities also claim the digital-only application system for Universal Credit is leading to patients being forced to confront their end of life prognosis when they may not want to have this knowledge.
Strict rules relating to data protection mean relatives or charities are now unable to handle speaking to the DWP and doctors in order to get a form called the DS1500 completed, in which doctors certify a claimant’s life expectancy.
“A lot of people don’t want to know how long they’ve got to live and in most cases someone who is caring for you can get the DS1500 form on your behalf and apply for it,” said Sinclair.
“But for Universal Credit, because the application form is digital, and because of data protection rules, nobody can apply for [it] for you. I’m concerned that [it] forces the knowledge that they have six months left to live on people.”
Madeleine Moon MP, who has put forward a bill to change the definition of terminal illness, argues another problem with the six-month rule is many GPs think fast-tracked benefits are only open to patients with cancer.
Those who do not qualify for Universal Credit under the strict definition of terminal illness must undergo work capability assessments to judge their fitness to work and must prove they are going to Jobcentres and actively seeking employment to receive payments.
Susie Rabins, the head of policy and public affairs at the Motor Neurone Disease Association, knows terminally ill people applying via the standard rules.
“They have been called into a Jobcentre and it’s been incredibly upsetting for them to have to explain to a work coach that they are terminally ill and that they aren’t going to be returning to the workplace because they are dying,” she said.
“If you are suffering from motor neurone disease you could be unable to use your arms or you could be unable to speak. There are challenges around the application itself. It’s a long process and it’s not suitable for people who are dying of a very grim and often fast-progressing neurological disease.”
Dr Millington-Sanders said she often has patients bring in letters about their benefits in a frenzied state, terrified that something is going to be taken away from them when they are ill.
“Having vulnerable and seriously ill people going in to have work assessments seems completely against the ethos that we are there to support them through their terminal illness,” she said.
“It’s frustrating from a GP’s perspective as well. I regularly have to write in and say I clinically disagree with a decision. The amount of time I waste trying to get hold of people and then having to appeal.”
Last month the DWP updated its guidance for clinical staff after months of campaigning and it now makes clear the benefits fast-track is not only for people with terminal cancer.
However, legislation still requires someone to have “a reasonable expectation of death within six months” for them to access benefits via the “Special Rules” route, although the government has admitted determining life expectancy is “not an exact science”.
Marie Curie and Motor Neurone Disease Association argue the guidance does not go far enough and are calling for a change in the law.
They have launched a petition calling on the government to scrap the six months rule which has over 10,000 signatures and is due to be handed into Downing Street next month.
The DWP told HuffPost UK its officials are in contact with the charities involved.
A spokeswoman said: “Terminal illness is devastating, and our priority is dealing with people’s claims quickly and compassionately. That’s why we guarantee entitlement to benefits and waive the need for face-to-face assessments.
“We’re looking again at how we support people with terminal illnesses, and in the meantime we continue to work with charities – including Marie Curie and the Motor Neurone Disease Association – to help terminally ill people access the support they need.”
‘I Was Told To Find Work Even Though I Can’t Walk, Breathe Or Talk’
Former health and social care professional Martin Burnell has motor-neurone disease, the debilitating illness Stephen Hawking suffered from, which attacks the nerves that control movement so muscles no longer work.
The 60-year-old has restricted mobility, struggles with speech, and needs a walking stick to move more than a few yards, but he did not qualify as terminally ill under the six month rule. His doctor believed the Special Rules only applied for cancer patients and as a result he was not deemed to have a terminal illness and was forced to apply for Universal Credit through the standard process.
“I have come to terms with having motor neurone disease and not being able to do the job I loved, but no one should have to go through what I did,” he said. “My GP wouldn’t initially fill in a DS1500 form for me, which would have meant everything would have been fast tracked. I applied for Universal Credit but it took a full year to receive it after much time and effort.”
Burnell at first received zero points in his work capability assessment for Universal Credit, meaning he was rated as capable for work, and was told that he had to seek employment despite struggling to walk, breathe and talk.
“Because I still had a little independence, and could cook and dress and walk so many yards without aid of a walking stick, they gave me no points,” he said. “But my speech is up and down and my mobility is bad. I was given zero points even though I told her I had motor neurone disease.”
The former health and social care professional worked in a nursing home and then cared for adults with difficulties until he was no longer able to work due to his health. Unable to claim Universal Credit without actively job-seeking, Burnell was left without any benefits for a year and only received Universal Credit payments after appealing.
“I was using the very last of my savings waiting for Universal Credit to be paid,” he said. “No one should go through what I went through just to get Universal Credit. I didn’t ask to get motor neurone disease. I can’t give it away. This is my life now.”