No 4 point PIP descriptors results
| Submission ID: 1164525 |
| Date: 2025-04-10 08:48:22 |
| Nickname: Olivia |
| Age: 65 |
| Main health condition: Both physical and mental health |
| Main conditions that affect daily living: Severe ME/CFS (for nearly fifty years, made worse by long covid), Orthostatic Intolerance, MCAS, asthma, IBS (which is part of the ME), arthritis, Graves Disease, Hypertension, dermatitis, generalised anxiety disorder, disc prolapse in lumbar area, waiting for surgery for a rotator cuff repair. I have problems with balance and coordination, speech, concentration, and particularly brain fog. I rely on a powered wheelchair for any distance beyond about ten paces, and am almost completely housebound, bed bound most of the day, unable now to go out to attend medical appointments due the the ME/CFS. I can't tolerate bright lights such as in an office, or background noise and movement such as having people moving around and talking in my room for more than a few minutes before I need hours of complete rest in darkness and silence. |
| 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: not sure because I need my home help to prepare food ahead so I can warm it up, I can't have ready meals due to dietary restriction. I can wash the front part of my chest, not my back. I can't wash my feet or butt, and I've almost lost the ability to wash my hair due to widespread muscle weakness from the ME. |
| Tasks you struggle with on a day-to-day basis: Getting out of bed, I can usually walk a few paces to the toilet but I really struggle at night. Im intermittently incontinent. I need a carer to help me with washing, fetching clean clothes and dressing, home help to do the laundry, home help to cook ahead and sort out the fridge and help with ordering supermarket deliveries. |
| Expected income you will lose if the Green Paper cuts are imposed: Hundreds a month. I simply won't be able to pay for my carers and home help, and the council won't provide it as they say I am capable of walking to the toilet and back. |
| Expected problems if you tried moving into work, with support from a work coach: I am unable to work, I would struggle to sit up and concentrate for ten minutes a day working from home, and it's the nature of ME/CFS that if we try to push through we get worse. Our only hope of maintaining our level or slightly improving is through resting so our overall exertion level is below the threshold that triggers Post Exertional Malaise. Exertion means mental effort, physical activity or tolerating bright lights, background noise, moving around in a wheelchair etc. I simply can't do it or I'd be completely bedbound afterward indefinitely from PEM and could die from my body not having enough energy for my digestive system to continue working. It's a completely devastating disease. |
| Anything else to tell us: I've lived with this disease for nearly half a century, its had almost zero funding for research and there's almost no provision for our healthcare in the UK, not a single specialist in the NHS, just doctors qualified only in other specialities who look after a clinic in their spare time - if the clinic even has a doctor at all. The few clinics there are are mostly failing to follow the new NICE Guideline and offer harmful treatments rather than help, many of us are worse because of decades of medical misinformation and gaslighting. Ive never witnessed before such an unprecedented attack on disabled people as this govt has resolved to implement. We won't even qualify for assisted dying. |
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