Disability CHAT/HELP Thread

Oh gosh, that's horrific. I didn't realised PIP had only given you standard for mobility. That's ****ing ridiculous of them arrrrrrrrrrrrgh

Really sorry social services have proved so **** hun

Yeah, mum says we should complain...haha. ahhh. That's effort, just wish people would get it write first time. Just don't have the energy atm because of everything else going on I guess. Just don't get how even PIP people acknowledged (at the very least) that I need help in a lot of areas to different degrees based solely on my EDS, just wish SOMEONE would acknowledge both the MH and physical stuff. It isn't hard. Thought the social would, but apparently not!

You're wasting your time complaining. I did and got some bog standard letter which said "if we lied, which we didn't, prove it". Oh, apart from the fact they had the nerve to call both my GP and ENT doctor a liar. Because of course, neither have a clue what they're talking about. And she couldn't decide on certain things. She got 1 thing right. I went from 4 points on care to 11 and 0 points on mobility to 12.

I'm not even sure why on earth she assessed me when she didn't even know anything about my disabilities - she asked what Hyperacusis was and clearly wasn't aware that it's much harder for someone with one of my eye conditions to drive. Apparently, I'd chosen not to drive. She then did an eye test which proved I'd never legally be able to apply for a licence in the first place. (You have to read the number plate at 20 metres. I can read it with glasses at around 7 metres)

You only have to read the report to know it was full of BS.

So the plot of "What happened to Shan's PIP application?" thickens: PIP have paid money into my account with the sender name PIP... but looking at the current rates, the amount paid into my account makes no sense whatsoever, as the figures don't add up

Will phone them up on Monday as still no letter

Sometimes the first payment is weird...that could be why?

Turns out a letter had arrived about my PIP award but my dad hid it from me til he thought I was well enough to open it (been really ill past few days), just in case it was a rejection.

Got standard daily living award Points for mobility but not enough to get an award for it. That is fair though. Award is 2 years, so have to go through all this faff again in 2 years time But over the moon to have got anything at all tbh

Huge shout out to @Pathway for providing so much support and advice/advice booklets to help me do the application. And thanks to all of you for all your support too

Yay! How was your PIP assessment?
My mum was looking up on the charity website for my condition and was suggesting I get some kind of benefit and even a blue badge! But I know that the PIP process can be stressful and don't always get awarded - people become so stressed when they're refused and they feel that the assessor wasn't fair. I feel quite sensitive about my conditions, often feeling like an imposter so to have an assessor suggest that there's nothing wrong would be devastating.

Yay! How was your PIP assessment?
My mum was looking up on the charity website for my condition and was suggesting I get some kind of benefit and even a blue badge! But I know that the PIP process can be stressful and don't always get awarded - people become so stressed when they're refused and they feel that the assessor wasn't fair. I feel quite sensitive about my conditions, often feeling like an imposter so to have an assessor suggest that there's nothing wrong would be devastating.

My assessment wasn't too bad actually - I was very lucky that I got someone who appeared rather human. Got a good vibe off her and she tried to put me at ease. Like when I was talking about the voices saying bad stuff about people I don't know, she asked whether they were saying anything about her. So I said the voices were saying that she and my CPN (community psychiatric nurse) were conspiring to kill me She then tried to reassure me briefly that she's not out to kill me

She was a bit daft in some respects though - clearly hadn't read up on my condition at all to see how it might affect me or what it might involve. Like for PIP, there's a question about managing money. So I started explaining that in hypomanic episodes, I can't control my spending at all and she looked bemused and shocked and was like "so are you diagnosed with bipolar?" Like if she'd bothered to Google my mental health condition, she'd know that it encompasses symptoms of schizophrenia and bipolar

Ngl, it is a very gruelling process to navigate and they don't really give you sufficient time to apply, or to appeal - a month for both those things. Like, the DWP must know that most disabled people won't be able to gather all the evidence, get help filling in the form, and apply/appeal within that time

I believe something like 50% of cases that are appealed, the decision is overturned in their favour and they are (eventually) made a PIP award. I was very lucky to not have to appeal at all, was bracing myself to.

My advice would be to go for it but prepare as much as you can in advance so that as soon as you get the form, you can get going on it quite easily. Get family and/or a local disability charity to help you fill in the form. @Pathway sent me a really helpful booklet - can PM it to you if that would help

Regarding the brain fog thing, I make super-detailed notes to so that my notes can do my remembering for me. But that takes time and energy that I don't have, so it's not an ideal system

This has to be one of the most frustrating things. For me there's an element of just going with it- if it's not happening and I've tried a totally different task too, it's probably not worth it. Obviously that doesn't work all the time but yeah. Sometimes I'll try something a bit easier, eg sorting out files, just so I can feel like I'm doing something useful still.

When I really have to do something eg because an essay is due I'll try and get just random words down in a list, that I can come back and attempt to make sense of later. And stuff like wandering round and drinking plenty etc. It's so hard not to get really annoyed with it though and more in a mess. In exams I get extra time and rest breaks which help with the normal day to day stuff a bit, but I dread the day I have to go into one again with full on brain fog. It'd be a disaster.

Sorry that isn't a lot of help, I do feel for you though! It's hard, you never know how you're going to be so try to do stuff early, but then do too much and end up worse. Chronic illness just sucks.

Have a little nap and come back to everything with your brain a little more rested?? Don't have massive amounts of experience with this but do struggle to concentrate sometimes.

You have EDS right? I do as well, I got awarded enhanced rate daily living and standard mobility. It can be done. Having said that, my assessor was a bit picky. during one of the physical tests they did on me I only subluxed my shoulders, not fully dislocated them, so because they went out and in and they were talking during that they didn't hear the clunking sound that was being made. Anyway, she then decided I needed no assistance with washing my hair or putting clothes on, which is wrong. It was quite funny that she said all that when she also noted how easily my fingers dislocate and the lack of power I have in my arms, so dunno why she think I could put clothes on without issue. I actually find it kind of sick how annoying my body is. You need compression stockings because you're more likely to pass out without them? Okay, but you gotta dislocate your fingers putting them on!!

Having said that, despite my EDS limiting me in a lot of ways, my MH is far more disabling, when reading the report it felt like she was minimising my MH and trying to go for the lowest possible amount of help I'd require. As an example, she said I just need assistance cutting up food, when in actual fact if I'm not prompted I just don't eat or drink (because I have anorexia).

For ESA the assessor didn't even bother looking at my EDS and focussed on my MH issues and I got placed straight into the support group.

Anyway, if you do want help with it, I'm around, just let me know. Things are a bit hectic though so might take a while for a reply.