The transition from DLA to PIP will harm disabled claimants

Causes for concern from a care worker.

I am a care worker supporting disabled people to live independently within my community. Many of my service users claim disability benefit, and I am concerned that the new assessments for Personal Independence Payment (PIP), which has replaced Disability Living Allowance (DLA), will not only cause them unnecessary stress and anxiety but threaten the freedom and standard of living they are used to having - and have a right to have.

The assessment for PIP requires claimants to attend face-to-face consultations, unless they’re housebound or unable to travel for medical reasons. Dave* has multiple sclerosis. Although he is not technically “housebound” it would be an enormous task for him to attend a consultation because he is wheelchair bound and doesn’t have easy access to disabled-friendly transport. It would be mentally overwhelming too, because beneath the bravado of a bloke who used to run a building site, Dave like many other disabled people has suffered a huge loss of confidence. The prospect would cause him unnecessary distress and it would take days to recover from the mental and physical upheaval of having been. But practical obstacles and vulnerable states of mind do not count as excuses to avoid these consultations.

The new assessments also prioritise testimonies from GPs and specialists rather than those from families, carers and social workers. Whilst a doctor’s input is invaluable in proving what disability a claimant has, they are no more qualified to comment on how that disability affects the claimant on a daily basis outside of the doctor’s surgery or hospital. 

Jane* has Parkinson’s disease and a rare condition that causes jaw spasms and excessive dribbling. She sees a specialist twice a year who is “managing” her well - she receives treatment, of varying success rates, for her medical conditions. So her doctor could feasibly suggest that Jane copes alright at home. If this testimony is the extent of Jane’s supporting evidence then her assessment will be inaccurate and overlook the practical tasks she cannot complete and the social interactions she cannot have. Jane’s doctor doesn’t know she spends her days hunched over a bin of wet tissues, often crying, with a constant stream of saliva pouring from her mouth. Nor should they be expected to, because they do not live and work alongside her. Since PIP is supposed to improve disabled people’s “ability to participate in society”, assessors should surely be concerned with living socially as opposed to surviving medically. As it stands, the new assessment and its preoccupation with medical evidence will fail people like Jane.

Claimants will be regularly reassessed for PIP once they receive it to ensure their circumstances have not changed. Bizarrely this will even apply to permanently disabled people like Tony*, a paralysed stroke victim, and Sue* who has Multiple System Atrophy (MSA). Their condition will never improve but they will nonetheless have to endure routine reassessments causing unnecessary stress and disruption – lest they forget that it is not their right to have this support; it is their short term privilege which can be taken away at any time.

Indeed it will be taken away. People who have leased ‘motorbility’ cars using their DLA risk losing them because the ‘walking distance’ that decides your eligibility has been decreased from fifty metres to twenty. Lucy* has cerebral palsy but whilst she cannot walk fifty metres, she can struggle to walk twenty. She lives in a remote village, miles from amenities and relies on her car. The infrequent and unreliable bus service clashes with her shifts as a ‘blood bikes’ co-ordinator (a voluntary courier service for the NHS) and besides, she suffers terribly with travel sickness. If her car is taken, Lucy’s independence will be taken as well.

Lucy said to me last week “we talk about vulnerable disabled people, but my disability doesn’t make me vulnerable – this government does!” As PIP sweeps across the country, I fear she is right. My service users will face a lifetime of exhausting assessments or have the disability benefit safety net pulled from underneath them altogether, simply because our government has decided to move the goal posts closer together in a bid to reducing welfare spending.

We must raise awareness about the impact these PIP assessments will have on disabled people. The MS society has campaigned successfully for PIP assessors to allow for the fluctuating nature of multiple sclerosis, something they previously failed to consider. Parkinson’s UK has campaigned to postpone reassessments for current DLA claimants until October 2015, to allow time for an independent review on how PIP works for new claimants. More of us need to follow suit, and I for one wouldn’t be doing my job properly as a care worker if I didn’t speak out against these PIP assessments, and the harm they are likely to bring my service users.

*Some names have been altered to protect the identities of affected individuals.

A response from the Minister for Disabled People, Esther McVey, to this piece is published here 

The assessment for PIP requires claimants to attend face-to-face consultations, though many are not able. Photograph: Getty Images.
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A swimming pool and a bleeding toe put my medical competency in doubt

Doctors are used to contending with Google. Sometimes the search engine wins. 

The brutal heatwave affecting southern Europe this summer has become known among locals as “Lucifer”. Having just returned from Italy, I fully understand the nickname. An early excursion caused the beginnings of sunstroke, so we abandoned plans to explore the cultural heritage of the Amalfi region and strayed no further than five metres from the hotel pool for the rest of the week.

The children were delighted, particularly my 12-year-old stepdaughter, Gracie, who proceeded to spend hours at a time playing in the water. Towelling herself after one long session, she noticed something odd.

“What’s happened there?” she asked, holding her foot aloft in front of my face.

I inspected the proffered appendage: on the underside of her big toe was an oblong area of glistening red flesh that looked like a chunk of raw steak.

“Did you injure it?”

She shook her head. “It doesn’t hurt at all.”

I shrugged and said she must have grazed it. She wasn’t convinced, pointing out that she would remember if she had done that. She has great faith in plasters, though, and once it was dressed she forgot all about it. I dismissed it, too, assuming it was one of those things.

By the end of the next day, the pulp on the underside of all of her toes looked the same. As the doctor in the family, I felt under some pressure to come up with an explanation. I made up something about burns from the hot paving slabs around the pool. Gracie didn’t say as much, but her look suggested a dawning scepticism over my claims to hold a medical degree.

The next day, Gracie and her new-found holiday playmate, Eve, abruptly terminated a marathon piggy-in-the-middle session in the pool with Eve’s dad. “Our feet are bleeding,” they announced, somewhat incredulously. Sure enough, bright-red blood was flowing, apparently painlessly, from the bottoms of their big toes.

Doctors are used to contending with Google. Often, what patients discover on the internet causes them undue alarm, and our role is to provide context and reassurance. But not infrequently, people come across information that outstrips our knowledge. On my return from our room with fresh supplies of plasters, my wife looked up from her sun lounger with an air of quiet amusement.

“It’s called ‘pool toe’,” she said, handing me her iPhone. The page she had tracked down described the girls’ situation exactly: friction burns, most commonly seen in children, caused by repetitive hopping about on the abrasive floors of swimming pools. Doctors practising in hot countries must see it all the time. I doubt it presents often to British GPs.

I remained puzzled about the lack of pain. The injuries looked bad, but neither Gracie nor Eve was particularly bothered. Here the internet drew a blank, but I suspect it has to do with the “pruning” of our skin that we’re all familiar with after a soak in the bath. This only occurs over the pulps of our fingers and toes. It was once thought to be caused by water diffusing into skin cells, making them swell, but the truth is far more fascinating.

The wrinkling is an active process, triggered by immersion, in which the blood supply to the pulp regions is switched off, causing the skin there to shrink and pucker. This creates the biological equivalent of tyre treads on our fingers and toes and markedly improves our grip – of great evolutionary advantage when grasping slippery fish in a river, or if trying to maintain balance on slick wet rocks.

The flip side of this is much greater friction, leading to abrasion of the skin through repeated micro-trauma. And the lack of blood flow causes nerves to shut down, depriving us of the pain that would otherwise alert us to the ongoing tissue damage. An adaptation that helped our ancestors hunt in rivers proves considerably less use on a modern summer holiday.

I may not have seen much of the local heritage, but the trip to Italy taught me something new all the same. 

This article first appeared in the 17 August 2017 issue of the New Statesman, Trump goes nuclear