No 4 point PIP descriptors results
| Submission ID: 1164835 |
| Date: 2025-04-10 12:17:56 |
| Nickname: Scary Mary |
| Age: 55-60 |
| Main health condition: Both physical and mental health |
| Main conditions that affect daily living: Dystonia, arthritis, long covid, fibromyalgia, peripheral neuropathy, hypertension, asthma, ME, cognitive impairment, POTs, ADHD, autistic, anxiety. New onset bladder incontinence |
| 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 - I get 16 points at present but all 2s and 3s |
| Tasks you struggle with on a day-to-day basis: Getting dressed - reminding, advising; help to understand what my body needs/what I''m feeling - eg toilet, drink, inhaler, anxiety, rest, food, more or fewer clothes because hot/cold. Planning - breaking things down, understanding what things mean. Phone calls. Advocacy/accompanying for appointments and help with communication, filling in forms, understanding complex information or what people mean. Food -planning, preparation, cooking on stove. Shopping, cleaning, laundry & changing bed - more frequently with incontinence that's under investigation at the moment. Getting out of bath/shower. Gardening. Wheelchair maintenance. Decision-making - especially budgets, purchasing. I get stuck easily. Planning journeys, accompanying on new journeys/busy areas. Exhaustion and overwhelm. |
| Expected income you will lose if the Green Paper cuts are imposed: ESA - support group with severe disability premium £12480 pa to UC standard rate (£5164) = £7,316 PIP high rate care = £5720 Total = £13,036 I have no idea how I will live on £5164/year, although presumably I'll keep my high rate mobility so can do wheelchair - but not sure how I'll afford electricity for keeping it charged, electric-opening front door, windows etc. I have a lot of pain and numbness made much worse by cold, so have to keep warm - tho in winter I have to keep cool, as body doesn't cool itself and I don't notice when I'm overheated. Cuts will mean no free-from food - i worry about getting sicker. I'm not sure if I will lose my council direct payment package - if so, I'll have no support to shop, cook, dress, eat, plan, communicate. How will I keep clean or fed, let alone go out? I live on my own - my nearby family have all died. I'm in a council flat with a room for mobility equipment and where people stay overnight as needed. Currently most of my PIP goes back to the council in bedroom tax and contribution to direct payments - total £4850/year. I will also lose the things to which PIP is a passport eg council tax reduction. I don't know who will help me. Being autistic phone calls are really hard. I worry I will die. People generally don't understand how much I struggle - I'm able to take part in community and do some voluntary work because of the support I have, but without it I won't manage. |
| Expected problems if you tried moving into work, with support from a work coach: I have a lot of pain and limited capacity - I usually leave the house twice a week. If I don't have help to wash and dress or plan journeys I don't know how I'd get to appointments. I'm autistic and need support to communicate, made much worse by anxiety/stress, and don't do phone calls. . People often think I'm being angry or rude when I'm just confused, tired, overwhelmed and struggling. I get really distressed by phone calls and feel desperate. I get stuck trying to explain things or understand them, although I have a high IQ. My numb fingers hands mean I increasingly drop things/knock things over, and pain/very limited strength in muscles especially arms means I struggle to repeat movements. I usually do things like this form from bed, slowly, then take hours to recover. It's often hard to learn new things and very stressful. I can't do public transport on my own in busy times - people trip over my wheelchair and I get anxious and confused - I get lost regularly, or get on the wrong tube or off at the wrong stop even though I'm a Londoner. I'm already feeling suicidal over these changes because I don't know what the future holds. When someone has power over me and we can't communicate I get really depressed and find it hard to reach out. I get stuck very easily and despair |
| Anything else to tell us: Over years of illness, treatments, operations, new conditions I've gradually built myself up to doing voluntary work with occasional permitted paid work. This feels like a stretch, but they usually understand when my body crashes and I have to take a few weeks out, or have autistic burnout from sensory/people/communication overload and need to cut myself off for a while. I don't know how a paid position would work unless they really understood complex physical conditions, wheelchair access and autistic people. |
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