And Yet Still No PIP

My repeated inability to secure any kind of disability benefit has so baffled professionals in the field that they have more than once asked whether I would have to be dead to qualify. But Rachel Reeves is in thrall to the media claim that such benefits are easy to obtain. As she therefore prepares to make matters even worse, having always promised to do so, John Pring writes:

James’s organs have been destroyed by a lifetime of heavy drinking. His inability to look after himself, his almost-constant pain and discomfort, and his desperate need for financial support, should be obvious to the nurse as she takes out her laptop and begins asking questions about the challenges he faces when cooking, cleaning, maintaining his personal hygiene, using the toilet, and with his mobility.

In the centre of the room is a large wooden table, piled with packets of medication, many of them unopened. The table surface is thick with dust, and there is an ashtray full of cigarette butts.

So much dog hair is embedded in the carpet that when his brother later tries to vacuum the flat, he blows five fuses before conceding defeat. In the kitchen, the oven is encrusted with rust and months-old burnt food. There is blood in the sink and the bath. In the bedroom, the mattress is now yellow, and stained with blood and faeces. James’ brother Dave will later describe the flat as “like a dungeon”.

His daily routine involves a long, tortuous walk to Lidl with Hachi, a black, white and tan Alsatian cross he rescued from Bulgaria. It is about half a mile each way but can take more than two hours. He stocks up on cans of beer or cider and a few bags of crisps or sausage rolls. Without a car, or – thanks to DWP’s decision in 2016 to deny him PIP – the money to pay for a taxi, he can only manage a few items. The staff at Lidl know him well and help him find food that is on offer.

Although a close inspection of the flat is not within the nurse’s remit, the grim living conditions are obvious. The written evidence James provided should have been equally persuasive. “I sometimes don’t even eat as I forget to do so,” he writes on the PIP form. “I have to remind myself to take my pills as I am getting very forgetful and have to remind myself what ones I have taken.”

He also writes of his constant sickness, and how that affects his personal hygiene: “I bath once a week. Can’t use perfumed products or I start coughing and being sick.” He uses baby-wipes to clean himself because of the constant diarrhoea, and often has to throw away his underwear because of his double incontinence. “I can’t eat hot food because I’m straight in the toilet. If I’m out I need to be always near a toilet or I foul myself.’ He never ties his shoelaces because he becomes breathless when he leans down.

He lives a solitary life. “I don’t talk to anyone and I generally stay indoors,” he writes. “I don’t like people … I keep to myself and ignore my front door as much as I can.”

The seriousness of his health conditions is clear. “I keep ending up in hospital throwing up blood.” Walking is also a trial. “I get short of breath and so I can’t walk far without stopping. I have got two walking sticks as I do have problems with my knees and can’t go far without resting or needing to go to the toilet.” His brother would say later that James would tire himself out walking to the kitchen, and would come back drenched in sweat.

None of this is enough for the nurse. Her report briskly dismisses the pain, the discomfort, the breathlessness, the double incontinence. There is nothing about the state of the flat. She reports how James answered the door and claims he used a walking stick at a “normal pace” and with “normal gait”.

“He did not appear to put any weight on the walking stick. He stood from the chair without difficulty … He was seen alone and was talkative and laughed throughout the assessment … He appeared well kempt, clean and appropriately dressed. He was observed to be drinking cider during the assessment but did not appear in a drunken state.” He looks well, she writes.

The DWP decision-maker awards James zero points for every one of the independent living and mobility descriptors. The decision suggests James has been lying: “At the consultation, there was no evidence of a significant physical restriction. There was no sign of breathlessness and you did not appear in pain… I have decided you can prepare and cook a simple meal for one person unaided… manage medication or therapy or monitor your health condition unaided, wash and bathe unaided, manage your toilet needs or incontinence unaided, dress and undress unaided.”

It is a similar conclusion with mobility. “At the consultation there was no evidence of a significant physical restriction. There was no sign of breathlessness and you did not appear in pain. You were observed to walk at a normal pace and gait… I have decided you can stand and then move more than 200 metres.”

James asks for a mandatory reconsideration – essentially the first-stage appeal – and attaches a letter. He says he has found the PIP decision “hard to come to terms with as I have lots of medical conditions and [am] taking countless prescriptions to help me”. He says he feels “angry” and “let down”.

His appeal, and the letter, are rejected. Again, he is scored zero for all twelve descriptors. He secures some welfare rights advice, from Hastings Advice and Representation Centre (HARC). The next stage is to appeal to a tribunal. HARC encloses a letter from one of its advisers, detailing the points she believes James should have been awarded: 25 points for independent living, and 20 for mobility. This would have been enough to entitle him to the enhanced rate of PIP for both independent living and mobility.

James and Dave had drifted apart, but in the last few years they are reconciled, and Dave can provide some support, and help his brother with groceries every now and then. There are limits, though, because Dave himself has had a brain haemorrhage.

“He never used to be a person who cried,” said Dave later. “But in those last 18 months I saw him cry a lot and it was always about the DWP and how cruel they were being.”

Several months after his claim is rejected, James begins to feel particularly unwell as he returns from his daily struggle to walk to Lidl. The walk back with his dog Hachi is a series of stops and starts. It is downhill, at least, but today it is even slower than usual. Eventually, he stumbles, staggers, and falls to the pavement. When the ambulance arrives, the blood has run 30 feet down the pavement.

James is rushed to hospital, but it is clear he doesn’t have long left to live. Dave visits him in his hospital bed and is shocked by his condition. His skin is yellow with jaundice. He tells Dave: “I can’t believe I’m going to die and I’m still not sick enough for personal independence payment.”

“That was the day before he passed away,” said Dave. “He’d been told the previous year that he was going to die and it was upsetting him, so he began to buck his ideas up a bit and he went into low alcohol drinks.”

If he kept to the beers and avoided the spirits, he might have another twelve to 18 months, he was told. But when his PIP was rejected again by DWP it “pushed him over the edge”. “It dominated every conversation I had with him,’ said Dave. ‘It was always about the DWP and how they didn’t care and they just wanted him to die. Once he’d gone into hospital they couldn’t get enough blood into him.” It was too late. His body had given up.

A picture of the two of them taken as James lies in his hospital bed shows him smiling for the camera, although it is more of a grimace. Dave’s white hair and the clean hospital bedlinen are a striking contrast to James’s jaundiced skin.

James dies at about 6am on Tuesday, 9 April. His family arrive half an hour too late. He leaves four sons and two daughters. James is 49, but as his brother will say later, he looks ten to 15 years older. As Dave left the ward for the last time, his brother had said: “I love you”.

“I love you, too,” Dave replied. “I knew that was the end because he never said I love you – ever,” Dave would say later. “I’m glad we had that time together. I think we needed it. I tried to have a bit of a laugh with him because it was quite obvious that he wasn’t going to be there for long. He’d spoken to the consultant that day and he said, “you haven’t got long at all,” and he’d cried that morning.

“But even that last day the DWP was still at the forefront of his mind, because they had basically taken over his mind since 2016 when he first tried to claim. There were tubes everywhere. The hospital staff couldn’t move him without causing him pain. Everything hurt. And yet … still no PIP.”

Dave launches a Facebook campaign, and a petition calling on the government to scrap the outsourcing of assessments to private contractors. “There would be some justice for his sons and daughters,” he says, “if private companies were no longer involved in these assessments, and the DWP looked at the client from beginning to end with their own specialist. That would give me some peace of mind that his death wasn’t in vain, nor the death of all the others.”

Dave is, in his own words, “the least likely person ever to get involved in something like this. I never wanted my face on TV or in the papers and yet I let all this happen because I began to think that this needs to be seen. And that’s when I began to learn how bad this whole situation is. It’s bullying, but bullying beyond belief. Discrimination doesn’t come close. It’s just violent, what they’re doing.”

He works through his brother’s paperwork, highlighting the inaccuracies and the lies in the assessment reports. “If this was a company with this many deaths on its hands,” Dave tells me, “it would be forced to cease trading and have a criminal inquiry. All the promises of “it will never happen again” by the DWP are a total waste of time because it is a department which doesn’t know how to behave in a humane way.”

In a rare case of DWP admitting its errors, a spokesperson tells me the department is “very sorry for the distress caused and are looking into this to prevent it happening again”. But DWP insists it has made “significant improvements” to its assessments.

In October 2020, the much-delayed tribunal takes place by telephone, following two previous attempts postponed because DWP failed to pass the correct paperwork to the tribunal. Without Dave saying a word, and based just on the medical information before them, the panel awards James Oliver the enhanced daily living component of PIP. A decision on the mobility component must wait, as DWP has again not provided the relevant information. A week or so later, Dave hears James has been awarded the standard rate of mobility. The judge is scathing about DWP’s non-participation and the delays it has caused.

In a Facebook post, Dave says: “Jamie had always wanted the PIP to go towards his funeral costs so his family weren’t covering this. He also wanted help with food and energy costs in his final months. It’s too late for that as the DWP were content for him to live in a cold, damp, dark, dirty pigsty. But let’s hope this is another judgement against the DWP which leads to much-needed change.

“This was about a government department who thinks it is right to treat the sick, disabled and dying like they just don’t have a right to exist. About private assessment companies who employ people where they are essentially paid to lie. About government ministers who haven’t got the faintest idea about what it’s like to be sick, vulnerable and cast aside like domestic waste.”

This is an edited extract from The Department. Read more in the book, which can be bought here. John Pring is the editor of the Disability News Service.