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Fully Paralysed Terminally Ill Patients Still Face "Inhumane" Benefits Process Almost Two Years After Promised Review

The DWP have been accused of running an "inhumane" benefits programme for the terminally ill (PA)

8 min read

Excl: Ministers are facing demands to urgently publish a review of the "barbaric" benefits programme first announced by the government in summer 2019.

Campaigners, doctors and carers have lashed out at the Department of Work and Pensions over delays to a pledged overhaul to benefits rules for those with a terminal illness.

Under the current system, only those with six months or less to live are able to have their benefits claims fast-tracked, with others facing reviews every three years even if they have been diagnosed with a terminal illness.

Earlier this month DWP minister Justin Tomlinson claimed the review had been "completed" having previously blamed the Covid pandemic for delays, but failed to set out any of the proposed changes or a date for when they will be published.

Speaking to PoliticsHome, Susie Rabin, head of policy and campaigns at the Motor Neurone Disease Association, which launched the #Scrap6Months campaign alongside charity Marie Curie, said urgent action was needed to fix the "really inappropriate" scheme.

Rabin added that people with MND had faced considerable struggles with the system due to the unpredictable and often fast-moving progression of the disease, saying those who had been given the "devastating" diagnosis should not be left to worry about financial hardship because a doctor was unable to confirm they had less than six months to live.

She warned that those who do not qualify for the special rules or are rejected are forced to complete a full assessment, including a review of their benefits every three years.

"I do know of carers who have had to fill in those 70 page forms that have come to me and said, this is ridiculous, there is no point where I can just say he is completely paralysed and ventilated and can only move his eyes.

"They have to go through every single question in order to get the benefits if they can't access the special route."

She added: "I know of people who are quite near the end of life who have been told their benefits will stop unless they re-apply.

"In some cases they die a few weeks or a couple of months later because they have been lucky to survive for three years and then are told to make a new claim and re-apply for benefits."

Their campaign has also received backing from senior neurologists, including Professors Chris McDermott and Ammar Al-Chalabi, who joined dozens of other doctors in signing a public letter in 2018 calling on ministers to change the system.

McDermott, a consultant neurologist at the Sheffield Teaching Hospitals Foundation NHS Trust said among MND patients that “predicting death within a six month time scale beyond doubt is not possible”.

"The pace of change, loss of functioning and increasing disability faced by patients mean they have urgent support needs," he told PoliticsHome.

"I strongly believe the focus should be on easing the burden on individuals reaching the end of their life as a result of MND; not putting obstacles, delays and distressing appeals processes in their way."

Al-Chalabi, a professor of neurology and complex disease genetics at King's College London, added the disease was for every patient a "relentless progression from full health to complete paralysis that kills".

"It is not reasonable, kind or ethical to expect someone with this devastating diagnosis to spend their precious remaining time providing evidence they will die within a certain timeframe."

Both said they had heard of DWP officials phoning up doctors and health care staff to query their clinical judgement about whether a patient was likely to die within six months.

Professor McDermott said his team had received the calls, but added while they had "not led to refusal of our cases" that they "do introduce delay for patients and take up time of staff".

Meanwhile, Professor Al-Chalabi called the practice an "inhumane waste of time".

"I have not had the DWP question my decisions, but I have heard that from colleagues," he said. "Clinicians are professionals and make their judgements objectively.

"Only about 10% of people with MND have a slow form of the condition, and even they will come to the end of life stage, so having to justify anything related to 'how terminal is this person' is an inhumane waste of time, resources and energy."

Meanwhile, campaign groups have argued the government's review should be expanded to ensure all patients with terminal conditions should be exempt from three year reviews of their benefits, instead relying on reports from doctors.

Mick, whose wife was diagnosed with dementia several years ago, said it was “crystal clear” that the system should incorporate anyone diagnosed with a terminal degenerative condition.

"I'm sure some of these politicians have cared for people with [dementia] but it's obvious they've never had to claim benefits for them because if they did this barbaric system would be changed overnight," he told PoliticsHome.

"The prospect of a three year review for someone with dementia is simply inhumane… I've got tears in my eyes thinking about it.

"Forcing people to do a... stocktake on how far someone has deteriorated is utter depravity. Someone with Alzheimer's who cannot look after themselves today will not be in a better situation in three years.

"The entire process seems geared to punish innocent people. How am I meant to answer whether my wife can prepare a meal for herself? On good days, maybe yes. On bad days she might wander off and set the pan on fire, or leave the gas on without knowing it."

Mark Jackson, Marie Curie policy manager for England, said the delay had led to "harrowing tales" of people fighting to get access to benefits in the final months of their lives.

"When the DWP said it would conduct a review it said that no one should have to suffer unnecessary hardship,” he said.

"Almost two years later that is still happening, with more than 6,000 people estimated to have died waiting for a decision on their claim.

"The Government has all the evidence it needs to publish the review and commit to changing this law – why the continued delay?"

Despite growing pressure from campaigners, ministers also failed to hit a deadline set by the Commons work and pensions committee who had called for the review to be published by the end of November 2020.

Labour MP Stephen Timms, who chairs the committee, said while they understood Covid may have delayed the plans that the last year "will only have added to the emotional and financial strain felt by those nearing the end of their lives".

Rebecca Gatenby, who had spoken to MPs in 2020 about her father’s struggles to access benefits, said the delays had left her “frustrated” and “angry”.

Speaking at a meeting of the MND all-party group in Parliament, she told MPs and Peers how her father, who was diagnosed with the disease in June 2019, had been forced to keep providing sick notes from his GP to the DWP to allow him to claim benefits.

Over the course of six months, before finally being given access to the terminal illness fast-track, he faced having his benefits stopped and was left trapped in a “stand-off” between the DWP, his GP and neurologist who could not agree on a plan.

"That meant even though health professionals had deemed him terminally ill, Universal Credit did not recognise it,” she said.

Speaking at the time, her father, an HGV driver who had been forced to give up his job as a result of his symptoms, added: "It was degrading to feel that I had to beg for financial support from a system I had paid into most of my life. I felt abandoned and reduced to a number.

"The word terminal should be enough.

"It should not be about time as no one can guarantee how long the terminally ill will live, regardless of the prognosis."

Rebecca's father died nine months after his diagnosis, and before the details of the review he had campaigned for have been published.

Speaking to PoliticsHome, Gatenby said: "We are nearing two years since the start of the campaign and we are still waiting to hear of any progress. 

"We have been consistently fed false promises from the DWP regarding the release of the outcome of the review."

She added: "The reforming of the benefits system for the terminally ill should be a top priority for the DWP, the current system is inhumane and causes unnecessary suffering to those who are already suffering enough.

"I have lost faith in our government."

A DWP spokesperson said: "Terminal illness is devastating, and our priority is dealing with people's claims quickly and compassionately. That's why throughout the pandemic we have continued to ensure fast-track access to benefits for those nearing the end of their lives.

"We continue to work across Government to bring forward proposals to implement the key changes identified in the review."

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