Will they though?
In the five years before my mum was diagnosed with dementia - I quote:
ESA assessment - mum on the floor actively fitting, me trying to support her and explain to the bewildered ATOS assessor what was happening (despite the fact that they claimed to be a GP…)
Assessor - ‘but she isn’t doing this every minute of every day is she? I mean surely you could work and just stop, have the seizure and then carry on working? That shouldn’t stop you from a job somewhere.’
ESA again -
Work coach - ‘I see no reason why your mother cannot work, and she legally has to attend a computer training programme where she will learn new skills to get a job, or her benefits will stop.’
When I explained mum couldn’t go without a carer as she was getting lost in her own neighbourhood never mind make a 50 min bus journey alone - ‘that’s not what I’m asking, her work capability assessment says she’s perfectly capable of working, to refuse is ridiculous.’
PIP -
‘Given she is only unconscious for 30-40 minutes of the day 4-5 times a week there is no reason she cannot care for herself otherwise.’
In the end we had to go through tribunal and mum won the maximum amounts - but in that time my mum had very, very little money and zero quality of life, lost 5 stone through not eating (despite me ordering her food off my own minimum wage job at the time). She was permanently freezing cold as she refused to use the heater.
I had to move in with her and stop working. I was told to claim UC, money taken off mum to give to me. Then I was told to apply for CA. Then I was told they’d given me too much UC and I was slapped with a £400 bill. Remember the DWP ringing me and the voice on the other end ‘£400 isn’t that much is it’ - I had £20.
Eventually she was diagnosed with dementia. By that point she was sectioned and yet again, benefits whipped out from under her immediately - you don’t get PIP if you’re in hospital or care. You get the bare minimum. Family top up her money for clothes, toiletries, snacks, music for her room, etc.
It’s absolutely absurd and I break my heart over the fact that my mum’s last few years of awareness were just endless stress and anxiety. How do you block that out?
Quality of life is an absolute joke, it was non existent. I got to the point of five sleepless nights and I threatened something truly awful of sheer desperation - at that point I got help immediately, up to then I was left to it. How the hell do I get that out of my head?
The system is not fit for purpose as it is, it’s awful.