Benefits on Trial is based on my work in Cornwall since 2012 as a volunteer advocate with adults who have a learning disability. In recent years, that work has increasingly concerned benefits cases: helping people with their applications for Personal Independence Payment (PIP) and Employment and Support Allowance (ESA); accompanying them to assessments; requesting reconsideration of decisions; and taking cases to the tribunal stage. That experience – particularly of tribunals – triggered the writing of Benefits on Trial.
The book describes how six people – all of whose names have been changed to protect their identities – have had to battle with the Department for Work and Pensions (DWP), whose system, with built-in hurdles, is loaded against them. Two of them figured prominently in my previous book, Austerity’s Victims: Danny, who is nearing retirement age and has Acquired Brain Injury (ABI), and Thomas, who is in his forties and has Down’s syndrome. Both live independently, but Thomas receives support at home from his mother and from Mencap.
The others are Ben, Jon, Tony and Denise. Ben, in his thirties, has fibromyalgia and ME (myalgic encephalomyelitis, sometimes called chronic fatigue syndrome), as well as being on the autism spectrum. He, like Danny, attends a day centre and gets support at home from both a personal assistant and a care agency. Jon, also in his thirties, has Global Developmental Delay. After going to a special school and taking a Special Educational Needs course at college, he now lives at home with his mother. Tony and Denise both have an unspecified learning disability. Tony is in his fifties and lives with his wife, Jill. Both Tony and Jill are unable to read or write. Finally, Denise, in her early fifties, who attends a day centre and lives with her husband – who also has a learning disability – without any support at home.
Benefits on Trial builds up a detailed picture of each of the six people, their current lives, and past events which have helped to shape them. The experience of Denise described below – her early years and her applications for benefits – serves as an example of the inhumane treatment suffered by all six at the hands of the DWP.
When she was eight, Denise had the first of what turned out to be many epileptic seizures; because of the way in which they have affected her memory, she cannot remember either much of the detail of her life after the seizures started, or what her life was like previously. A member of staff at her day centre, however, who went to the same secondary school as her, recalls both appalling bullying there, and later, when Denise was nearly twenty, a sexual assault, the perpetrator of which was taken to court.
Not the start in life that most of us would want, but one that cries out for compassion. Instead, the opposite was inflicted upon Denise, and by the state. Like everyone else described in this book whose applications for PIP were turned down, Denise was left with an income on which no-one should be asked to survive. In 2018 she received £107.50 a week: only 26.86 per cent of the UK median, 28.27 per cent of the equivalent median for the South West, and 39.99 per cent of the Joseph Rowntree Foundation’s UK Minimum Income Standard – the minimum, in the Foundation’s words, ‘in order to have the opportunities and choices necessary to participate in society’. Denise’s situation was made far worse by the fact that her husband, George, had no income, and therefore the money she received had to provide for two people.
Benefits on Trial describes her prolonged fight to transfer to PIP. A key part of this was countering the distortions of the DWP. For example, her assessment and subsequent references to it misrepresented her learning disability. Even though evidence was given in the medical records we had submitted, in documents from the DWP there were three references which cast doubt on her disability. One of these references – “You do not have a diagnosed sensory or cognitive impairment” – illustrates how skewed the DWP representation of her condition was.
At her appeal, heard in June 2020, the outcome was successful for Denise. Despite the DWP having given her no ‘points’ (which is how the DWP ‘grades’ the levels of disability experienced by applicants for PIP) in the original decision and at the Mandatory Reconsideration stage, the tribunal panel gave her 11 points for ‘Daily Living’ and 10 for ‘Mobility’, resulting in a standard award – successful applicants receive either a standard or an enhanced award – in both areas. Such a result at the tribunal stage is typical of the cases described in Benefits on Trial, which surely leads to the conclusion that most claimants’ applications are entirely justified from the start.
The fact remains, however, that the tribunal decision for Denise came three-and-a-half years after she had first been turned down for PIP. Over those 42 months, she had been confronted by all the hurdles created by the DWP and, initially, had fallen at several of them – only to pick herself up again and again. For this long-drawn-out period – during which she endured acute stress that triggered panic attacks – she had been left, with no follow-up enquiries from the DWP, in a state of relative poverty. A successful tribunal decision is small compensation for what she had suffered.
Hers is a typically painful example of the pressure and distress inflicted by the DWP. Where the state should help someone like Denise after her experiences in childhood and adolescence, instead it intervenes, through the DWP, to make her life even worse.
Denise and the other people in my book are not isolated examples of injustice. The DWP’s own statistics show that the success rate of appeals against PIP decisions for people with a learning disability is approximately 90 per cent in the three most recent years for which figures were available when Benefits on Trial was published.
What, then, should be done to tackle this injustice? Above all, the culture of the DWP has to change. When it has refused the benefit applications of the people in my book and left them in relative poverty, not once has it followed up the impact of its decisions. This failure to show a duty of care – this lack of humanity – was ‘justified’ by Secretary of State for Work and Pensions Thérèse Coffey on 30 September 2020, when she asserted to the Work and Pensions Committee that her department has no such duty to benefit claimants. Instead, she said that duty should be left to “the local councils, the social services, the doctors and other people”. Such a casual approach to governmental responsibility, typified by the nebulous and throwaway term “other people”, is unacceptable.
Equally unacceptable is the attritional approach of the DWP – a key aspect of its culture – that attempts to grind people down until they lose the will to fight. Danny’s experience is typical of what so many undergo. After a motorbike accident in 1980 he was in a coma for over six weeks. Once he had returned to consciousness, he was unable to walk, crawl or sit up, and had lost all memory of key elements in his life, such as the school he had gone to. Recovery was a painfully slow process. He had to re-learn, first how to crawl, and then how to walk. From that point, it took several more years before he was able to move away from his parents and live independently.
He has, however, been left with a number of health problems: vertigo, palpitations, an underactive thyroid and emphysema; his legs ache if he stands continuously for any length of time, and walking any distance is a strain, not just because of the aching but also because of chronic lower back and groin pain. As a consequence, he sleeps very badly, with a resultant build-up of tiredness. Hardly surprisingly, stress is a growing issue for him.
Despite all of these problems and despite the fact that his benefits had not changed significantly for over three decades, in 2016 the DWP tried – unsuccessfully – to take away his ESA. That attempt – described in Austerity’s Victims – was followed three years later by the DWP trying – again, unsuccessfully – to deny him PIP.
If the DWP changes that attritional culture, so starkly seen in the treatment of Danny, specific aspects of the way it works then need to be tackled. First, it must make constructive use of the information that is already available to its officials, instead of – for example – ignoring previous tribunal decisions as if they hadn’t happened. Second, it must make reasonable adjustments to its procedures, instead of – for example – sending a 33-page PIP application form to someone like Tony, who cannot read and write.
Third, the quality of assessors has to improve. At Thomas’s assessment, one question from the ‘Health Professional’ – supposedly an ‘expert’, according to the government – was enough to demolish that ‘expert’ status: his parents were asked of his Down’s syndrome, “When did he catch it?” The crassness of the question would be laughable if the circumstances were not so serious.
Until those changes happen – and obviously more improvements are needed than just the three I’ve explained above – the DWP will stand exposed by the evidence in my book. The current benefits system – with the sort of distortions that denied any ‘diagnosed sensory or cognitive impairment’ in Denise – does not need minor tinkering; it needs instead to be replaced by one that takes fair assessment as its guiding principle. If that happened, someone like Denise would not have to wait 42 months, deep in poverty, to overturn a DWP refusal to allow her PIP.
Benefits on Trial is available here. Incidentally, my aim is not to make a profit on sales but rather to engage as many readers as possible. The print version is therefore for sale at cost price (£2.83) and the e-book version at 77p.