The UK’s benefits system for disabled people, whose life with a disability is a life spent battling to achieve even the simplest of tasks and that takes an immense toll physically and emotionally, is simply vile and insidious, and the assessment is just appalling.
First published: July 2022.
It seems that my bad experience with PIP is sadly typical, so I have decided to share it in more detail, partly in order to help me get my thoughts together for getting the DWP to reassess my claim but also because I hope that by sharing my experience it will put pressure on the Scottish Government, which is taking over PIP in Scotland and replacing it with Adult Disability Payment, to ensure that its new system makes more accurate, humane and sympathetic assessments which preserve the dignity of claimants and aid them instead of grinding them down and adding to the stress and exhaustion that living with a disability or chronic illness creates.
One of the lessons I have learned since my stroke is that while you can recover many of the functions and abilities that the stroke robbed you of, performing these tasks becomes far more time-consuming, exhausting and difficult. Before the stroke, I could get washed and dressed in a few minutes. Now it takes the best part of an hour, and that’s on a good day. Before the stroke, I could write a one thousand-word article in 30 minutes and then go about my day. Now it takes three hours or more to peck it out with my right hand and leaves me mentally and physically drained. I can only use a full-sized keyboard, I cannot manage texting on a mobile phone.
A life with a disability is a life spent battling to achieve even the simplest of tasks. This takes an immense toll physically and emotionally. Studies have found that people who have a physical disability are three times more likely than able-bodied individuals to suffer from depression. Taking care of your mental health is one of the most difficult challenges that you face when you have a physical disability or chronic illness.
So given all this, when you encounter a setback like your claim for PIP being wrongly assessed or turned down, it can have a devastating effect on your emotional and mental well-being, potentially far worse than when a healthy and able-bodied person encounters the same setback. It is so much harder for you to do anything about the injustice you have just suffered and to get it put right. This is what makes the shitshow of the UK’s benefits system for disabled people so vile and insidious.
I have significant disabilities which will be lifelong. I suffered a massive stroke which destroyed the parts of my brain dealing with motor control and sensation on the left side of my body. This was particularly difficult since I was very dominantly left-handed before the stroke. Fortunately, I escaped any serious loss of intellectual or verbal functioning, although I do have some memory issues and can no longer multi-task like I used to. My reaction times are also impaired.
I also have issues with inattention to the left. This is due to the stroke affecting the parts of the brain that process visual information. This problem was severe in the weeks and months after the stroke. The best way to explain it is that it’s like when you are looking for something but then realise that it’s been right in front of you the whole time. I would not notice things, even large objects, on the left side of my visual field. This problem is a lot better than it was, but it’s still there and always will be. I have learned to compensate by training myself to pay attention to the left, but of course, this means I am not always paying attention to the right. This makes me prone to walking into obstacles and it’s why I have the unfortunate habit of leaving our front door open as the handle is on the left as you exit.
All this means I need help to ensure that I am safe.
I have lost all fine motor control in my formerly dominant left hand. I have very poor sensation and proprioception (your sense of where your body is located in space) in my left hand, arm, foot, and leg. I only know where my hand and leg are if I am looking at them. I have very little feeling in my left hand, arm and leg. I suffer from bouts of muscle cramps and spasms as well as a general weakness in all the muscles on the left, in my torso and back as well as my limbs. Picking something up from the floor is difficult, exhausting, and painful.
These problems mean that I need help with many daily living tasks as I am liable to trip and fall and am at high risk of injuring myself without being aware of it. This is made more serious by the fact that the blood thinning medication I am on means that if I cut myself I bleed copiously and if I fall I am at very high risk of suffering a haemorrhage. I cut my left-hand yesterday and have no idea how it happened. A couple of weeks ago when getting undressed there was blood all down my leg. I didn’t feel anything and don’t know how I injured myself. This kind of thing happens fairly often.
I am prone to bouts of post-stroke fatigue. This is a common symptom in the months and years following a stroke. When this happens I am not able to do very much at all.
Even though we have an adapted bathroom, I have got stuck in the bath a couple of times and have also fallen a couple of times while getting out of the bath. I have also slipped and fallen a couple of times in the shower. I need help with showering as I need to hold on to a grab rail with my good hand, which means it’s difficult to wash myself. I can’t wash or dry my feet or lower part of the body. I can only shower or bathe if my husband is in the next room in case I get stuck or fall.
I need help to put on the creams and potions for my psoriasis, I can’t manage bottle caps at all. Childproof packaging is also stroke-proof packaging. I need help to tie my shoelaces and do up the clasp on my trousers. I cannot manage cuff buttons at all and rely on a button puller (the best seven quid I ever spent) for other buttons. I can’t pull on a jumper sleeve over my right arm, I need help with that. I need help to put an overcoat on. Other household tasks, like changing the bed or doing laundry or the dishes, are beyond me.
I cannot cook at all. I have very limited dexterity in my one good hand, I struggle with packaging and cannot carry a plate of hot food so can’t even use the microwave. I need someone to cut my food up for me into bite-sized chunks.
I need a stick to walk. I cannot stand for any distance or length of time even with a stick, without a stick or something to hold on to I can only stand for a matter of a few seconds. and can only manage a few steps. Even with a stick I can only walk a very short distance on a good day and cannot stand for long. Because of the problems I’ve already mentioned I am at very high risk of tripping and falling. I have fallen a few times. Additionally, I have developed asthma since the stroke due to the weakness I now have in the muscles of my torso and chest. This means I need to stop and rest after even mild exertion, and further limits the already short distance I can walk.
I have been ruled medically unfit to drive, even with an adapted car. Public transport is massively challenging. I can’t stand at a bus stop or walk from the train station or bus stop to where I need to go. I can’t manage a shopping trolley and can only carry one plastic bag with a little shopping in it in the same hand I use for my stick.
All this was explained to the DWP when I applied for PIP.
I was awarded the lower rate of the daily living component of PIP but nothing else. The award letter says that the DWP will not reassess my condition until 2025, so they recognise that I have a long-term disability.
I was shocked when I got my award letter to find five areas in which I have been incorrectly assessed. I suspect this was done to bump me down from the higher rate of the daily living component of PIP to the lower rate. They said that I can wash and shower without assistance as I have an adapted bathroom. This is not true. They said that I can manage my medications without assistance, this is not true. They said I can dress myself without assistance using an aid – presumably they mean the button puller. But this is not true. They said I can eat and drink without assistance, but since I need someone to pour a drink for me and to cut up my food this is most definitely not true.
However most egregious was their assessment that I can prepare a simple meal using an aid. This is simply a flat-out lie on their part. There was no discussion at all of cooking aids when I applied or had the face-to-face assessment. I have no cooking aids. I explained that I cannot cook at all, that I have injured myself in the kitchen, and that I can’t deal with packaging. The DWP have simply invented a phantom cooking aid in order to claim that I don’t need someone to help prepare food for me.
If the DWP had assessed me correctly in these five areas – and they were given accurate information, then I would have been awarded the higher rate of the daily living component of PIP.
But most gobsmacking of all was their decision that because I can hobble a few metres with the help of a stick I have no mobility needs. They say I am able to plan and follow a journey myself because I can plan and follow a journey myself for as far as I can walk, which is not far at all. In effect, they have ruled that there is no difference between me and a marathon runner in terms of mobility needs. They have paid no heed to my propensity for falling, tripping or colliding with objects or to my regular bouts of fatigue.
I have asked for a reassessment. I have been told that the DWP habitually awards the lowest that they think they can get away with, knowing that many people will not appeal. However, I was appalled by how poorly their assessment was done. Apparently, this is typical. I am articulate and capable of explaining my issues in detail.
If I am having this problem with my PIP application what is it like for people with verbal or cognitive problems.
In order to ask for a reassessment, you have to phone and negotiate a cold and unhelpful automated menu system which many people with disabilities will struggle with. Then you are put on hold for ages until you finally get through to an advisor, and the first thing they tell you is that asking for a reassessment could result in your PIP award being reduced. It’s intimidation and bullying designed to put you off.
I have heard similar tales from dozens of people. This is a system which is not designed to help disabled people but to fob us off and shut us up. Well, this cripple will not be shut up.
- Personal Independence Payment (PIP) | Gov.uk
— AUTHOR —
- Text: This piece was originally published in Wee Ginger Dug’s blog and re-published in PMP Magazine on 29 July 2022, with the author’s consent. | The author writes in a personal capacity.
- Cover: Flickr/Roger Blackwell. - Disabled people protesting outside St Francis House PIP Assessment Centre, Norwich. | 2 December 2016. (Licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.)