No 4 point PIP descriptors results
| Submission ID: 1165350 |
| Date: 2025-04-10 17:04:38 |
| Nickname: StarGirl13 |
| Age: 49 |
| Main health condition: Physical health |
| Main conditions that affect daily living: Ehlers-Danlos Syndrome Hypermobility variant, Axial Spondyloarthopathy, Severe Osteoarthritis in both knees and various comorbidities. |
| Rate of PIP daily living component: Enhanced |
| 4 point descriptor score: No |
| Possibility to score at least one 4-point daily living descriptor at the next review: Unlikely although I think I should, but I didn’t at my last review when I should have either. |
| Tasks you struggle with on a day-to-day basis: I live alone and am single. I take a myriad of medications, many of them for pain including several opioids like morphine yet I live in a high level of constant pain. This level of pain causes sleep deprivation and fatigue and the amount of opioids creates a lack of sharpness and brain fog. I am extremely forgetful and have to keep notes and set alarms to remind to take medication and get every day tasks completed. I cannot wash my own hair at all or below the waist most of the time. I am often unable to shower at all without assistance despite having aids. I cannot use a bath at all. If I pass a stool in the morning I cannot reach to clean myself as my spine is so stiff. I have to use incontinence pads daily. I am unable to cook the most basic meal for myself so I rely on ready prepared meal replacement drinks. I have special cutlery for when food is sometimes made for me. I use special lightweight cups and beakers with lids and melamine plates and bowls as they are light. I have a lot of pain and weakness in my hands and wrists. Any joint in my body can dislocate or sublux at any time. I can’t walk more than a few steps at a time or stand for more than about 20 seconds before severe pain kicks in in my lower spine. If I try to use a stool in the kitchen it is too painful for my coccyx. Sitting hurts a lot. I need to lie down. I usually have to sleep in the clothes I’ve spent the day in or vice versa. Getting changed can be too difficult, particularly the bottom half. I’ve adapted my clothes so I don’t wear buttons or anything fiddly or tight but even so. I often have to stay in the same dirty clothes even though I would really like to change. |
| Expected income you will lose if the Green Paper cuts are imposed: If I don’t score 4 points at reassessment (I’m assessed every three years) then I will lose the enhanced daily living element of PIP which is £478.40 a month or £5740.80 a year. As I understand it moving forward losing PIP will also mean I will no longer qualify for the health element of Universal Credit, even though I am currently in the support group and not expected to look for work. I will therefore lose another £423.27 a month or £5079.24 a year. I will then also lose the previously protected transitional Severe Disability Premium of £143.37 a month, £1720.44 a year. I don’t know how this will affect council tax support and anything else. Combined these total a loss of £1045.04 a month or £12540.48 a year. That one change to PIP will see me homeless. |
| Expected problems if you tried moving into work, with support from a work coach: Many problems as I am simply not fit for work. If I was I would be the first out there looking for a job. No-one in their right mind would give up an enjoyable lucrative career to live like I do. However, let’s pretend for a moment that by some miracle my degenerative conditions improved and I was able to return to work. I don’t need a work coach. My career until my 40s was spent in the resourcing side of Human Resources. I’m highly experienced in interviewing, writing CVs, executive coaching etc. How I was many years ago and many others now, need employers to make major adjustments to accommodate those who have ‘dynamic’ conditions. To allow them to work from home and at odd hours that suit them. If that’s at 2-6am sometimes because that’s when they were most awake or in the least pain then so be it. If I could have worked a genuine 35 hour week (not the 50 actually expected) with a good degree of flexibility then I could have stayed in employment longer. Instead I was belittled, lied about and cleverly bullied by the very department meant to take care of employees to some degree. I worked in the HR department yet they made my life hell on two occasions. Apparently an ergonomic chair and mouse is all the reasonable adjustment you should really need. Compromise agreements were used both times to buy me off and silence me and I was too exhausted to fight. This is a very common story that is heard all the time. Until it changes disabled people will not have equal opportunities in the workplace. On a realistic note, the jobs market is not particularly healthy right now and with my background I can be realistic about it. Why would an employer who is struggling to survive and now has added NI costs choose to hire a disabled person like myself who will be unreliable (I can’t help it but I am) when they have plenty of able bodied reliable people to choose from? We see how reliable disabled people can’t get good jobs so what is the government changing for them? A work coach won’t make that difference. It has to change at the employers. Where’s the incentive for them? |
| Anything else to tell us: I don’t score 4 points anywhere. I should have done for preparing food without a doubt but I didn’t and my needs have stayed the same regarding that. Not being able to wash my hair or myself below the waist doesn’t qualify for 4 points so apparently I can go to work and smell foul and that is morally right. How they expect someone with my life to work is beyond me and yet according to their plans I’m the very definition of person they expect to do just that. I’ve lost all but two friends because I can’t go out and socialise anymore. Someone known for being vibrant at work and play is now a shell. My mum who is in her late 60s with her own health issues is my carer but I’ve ended up living 30 minutes from her as landlords aren’t keen on disabled people who aren’t working. I had to sell the one bed home I had lived in for 15 years because it couldn’t be adapted. No schemes were available in my area for me to put the remaining equity into (the support for mortgage interest loan from the government had taken a chunk) so I’ve had no choice but to spend it all on rent. Now I’m in a situation where the Local Housing Allowance is so low and frozen again that it doesn’t cover the rent on my modest home so I have to make up £300 of it from PIP. ESA only covers basic bills and food, particularly now they will be freezing the health element of Universal Credit despite all the bills going up. Like Southern Water by 47%. I’m trying to save for a boot hoist for my wheelchair but how will that happen if I lose PIP? I will lose my home and everything else including my last bit of dignity. I’ve already lost enough to these disabling conditions. Thank you for reading this. |
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