Mastodawn

This is the start of a thread on completing a PIP review , as I know it's going to be a stressful few weeks to get this done and I need an outlet that keeps my gripes factual and not emotional. The system is broken and abusive, but many people don't understand what's happening in the background of it is not discussed. If this helps one person get through their PIP process or opens one eye I'll be happy.

PIP is the UK Department for Work and Pensions (DWP) personal independence payment.

EdibleFuchsia Feb 27

I've had PIP for a few years. Originally I didn't get a much as I thought but by the end of the process I was too exhausted to fight an appeal. A year later I knew I would have won that appeal but its a lot to deal with when you're already low on everything.

This time I'm hoping to get more, but I know that's rare on a review, so I'm preparing to fight it.

What's the process?
When you get PIP they give you a rough idea of when it will be reviewed, mine was supposed to be 2025. Now here we are in 2026. They send you a text to say the review is coming. I'm going to change dates here because you know. So say I got the text on 10th Feb to tell me I'll be receiving the form, I then received it on 17th Feb. A week later! The form then says I have until 9th March to return the form to them (they need it by the 9th). So that is 20 days, minus 2 days postage, 18 days. Bearing in mind PIP can be awarded to anyone, those working, disabled, etc etc this 25 page form needs a massive time input

EdibleFuchsia Feb 27

So people with families, jobs, and debilitating conditions all get just over 2 weeks to find a couple of days to complete the form. Realistically if you're going to get anywhere with them you need to get a citizens advice appointment. Here, current wait times are 2 weeks plus for a phone appointment and more for a face to face. You'll also need to contact your therapists for letters, get friends and family to write statements, etc. So drop everything people we're going in.

Worth bearing in mind you can ask for an extension, but you have to go through the PIP helpline of doom to get this. Mine is now extended so I have 4 and a half weeks to work on it. The CAB will also not book an appointment until you physically receive the form as they know it might be weeks after the first text from dwp.

Let's document the time spent on these phone calls (inc time spent on hold):

Initial calls CAB to ask for help and to book appointments 73 minutes.
Call to ask for extension from DWP 20 mins.

EdibleFuchsia Feb 27

Final thoughts for now, because rest is required at this point so I have enough energy to wash my hair.

Let's just remember the DWP don't have to have such tight deadlines, they could give you a 3 month warning text then send it with a 2 month deadline. They clearly don't mind extending it, so why bother with the phone calls and militancy? Control I guess. But these reviews are going to people who are likely long term sick or disabled (you have to declare if your situation changes), it's just abusive in my opinion.

EdibleFuchsia Mar 6

So I've been working through the form, doing about an hour a day. I've got the 140 page guide from the benefits and work website, which is very detailed about wording. I'm finding I fall through the cracks because mecfs really doesn't fit into the dwp's ideal descriptors. I've got lots of notes now written out on paper, but at some point I need to type them so I can fiddle around getting the ideas into the right places. I'm really fatigue at the moment and anything extra in the day is too much, so nothing is getting done around here. I'm a little worried about missing a tiny detail and it being used against me. At least its ticking along towards my cab appointment next week. The worst part is having to reflect on how difficult life is, like I really needed it bringing back up. Send me cute cheering pictures please!
#PIP #MECFS

EdibleFuchsia Mar 14

#pip update time. So I had a phone call with someone from Citizens Advice last week. Normally my in-person interactions with CAB have been nothing but praiseworthy, they're great. This one, ugh no. She basically read to me my answers from my first pip application, asked if there was any change, then read me out an answer that fits. I'm pretty sure she was using AI as she was so quick to formulate answers. There was no discussion no advice, until I really pressed her about descriptors. The way she spoke was *almost* as if someone from the DWP was doing a second job as a CAB advisor it was sooo impersonal. Worst bit, she emails me the summary "Dear Client" (yuck- we spoke for 2 hours and you're not using my name?) and she'd changed references to HYPOtension to HYPERtension. Err no, that's not my condition, nor what was described at all and a massive error. So anyway, back to recompiling 3 documents together now (original, CAB revision, my new version). I'm so tired.

EdibleFuchsia Mar 17

Update number 4 #pip? Just had a super helpful session with a friend who has experience as a respiratory specialist. She's been great at summarising the variable nature of MECFS and why my needs are variable and in combination mean that everything is impossible for me, plus medicalising statements. But also in total agreement that the system is shit and abusive and doesn't help people to feel valued or human or to recognise in any way the real strain they're going through. It would be so much cheaper in terms of mental health, energy costs (to ill people) etc to just give everyone who's sick benefits without question with no checks. Bit like being cheaper to not charge bus fairs. Bring the system down.

Doug Belshaw Mar 14

@EdibleFuchsia Probably using something like Caddy: https://justiceinnovation.law.stanford.edu/how-ai-is-augmenting-human-led-legal-advice-at-citizens-advice/

They would probably want your feedback as the CAB bunch are usually pretty good/responsive.

EdibleFuchsia Mar 15

@dajb thanks for this, that sounds like it. It was probably just being used in a really poor way, the interaction with the advisor was terrible and there was no apparent desire to provide advice, it was effectively a summarisation service, which arguably some people want, but the nuance of thinking about how my needs fit with descriptors was what I was after. Yes, I'll try and send them feedback when I've got my form in. #DisabilityLife

Doug Belshaw Mar 15

@EdibleFuchsia I only say that, not to add a burden, but because in my network Caddy is often seen as a massive success story.

EdibleFuchsia Mar 15

@dajb real feedback is necessary, just wish they would do more co-creation before hand to avoid some of it! That wasn't a dig at you!

Mike 🇬🇧 🇪🇺Mar 15

@EdibleFuchsia
I'm impressed that you found a CAB office that was (a) interested in PIP and (b) open.

When I tried to get CAB help with my wife's PIP claim some ?10 years ago the local office were spectacularly dismissive.
When I tried to get help for my daughter with her PIP + Benefits issues her local office was open for approx 6 hours a week in person only.

I ended up having to help both of them (successfully) navigate the PIP minefield. I was •much• less successful with the benefits system which is a complete mystery to me.

The Benefits & Work forum and website were / are the gold standard in my opinion.

EdibleFuchsia Mar 15

@MikeFromLFE must be lucky, its probably getting worse than 2 years ago, even though we have an office, as this time I was pushed towards the (ai) phone appointment rather than in person (+4 weeks notice).

Fiona Craig Mar 6

@EdibleFuchsia Here you go!

This wee fella and his sister helped me through my own form-pocalypse the other month!

EdibleFuchsia Mar 6

@FionaCraig he would definitely help. Do you loan him out?!

Fiona Craig Mar 7

@EdibleFuchsia If only, he might earn an honest living!

Lyndsay Barwell Mar 6

@EdibleFuchsia good luck. Mine started in 2023 though I only got it from tribunal this year. Not looking forward to this process at all. In theory, there are notes that match mecfs but the points match don't at all, which I think is why DWP denies points but tribunal gives them.

EdibleFuchsia Mar 6

@treehugger thanks yes, I'm fully prepared to have to go to tribunal now. I was too exhausted last time. Why do they not even mention mobility scootetrs?!

Lyndsay Barwell Mar 7

@EdibleFuchsia as I understand it, they don't really care about things that aren't prescribed by the NHS. They would rather award money to people stuck in their homes rather than people who have found ways to live a better life. :( And also people who are doing better because they have assistance seem more likely to get it than people suffering more because they don't have assistance. Makes no sense.
My (adult) step-child is about to apply due to post sepsis syndrome...

EdibleFuchsia Mar 7

@treehugger and I'm sorry you're going through it with your stepchild, send them some good wishes from a stranger on t'web.

Lyndsay Barwell Mar 7

@EdibleFuchsia ...and I think they have a good chance because we can genuinely say we're doing the daily living tasks for them and they don't leave the house without us. But someone more unwell who has more adult responsibilities to somehow manage would not qualify.

EdibleFuchsia Mar 7

@treehugger thanks for the reflections, yes its all very uncompassionate. Like some days I won't do daily living because I put my kids needs ahead of my own, but how do you quantify that in their stupid answers!? No answer needed BTW, just musing.

Lyndsay Barwell Mar 7

@EdibleFuchsia thanks, sepsis is horrible and another case where doctors and public seem unaware of the fatigue that can come after.

Sometimes I think less is more with these forms but then they may dig more in assessments, it's very tricky.

And another rant, what if the things that help cost money but they aren't assistance from a person or NHS provided? People say pip is for disability related costs but it's really only for costs they approve of.

Mike 🇬🇧 🇪🇺Mar 6

@EdibleFuchsia
You may not want me to reinforce this, but as the B&W guide says (or used to say) it's not about your condition or diagnosis, it's about your capability to do the things in the descriptors.

Once I'd got that concept into my thick skull I successfully helped both my wife and daughter with their PIP claims & reviews.

Certainly the diagnosis of the condition is important, but it's way down the list of things to think about when completing that dreadful booklet!

Good luck!

Fiona Craig Feb 27

@EdibleFuchsia Wishing you luck & solidarity. I'm going through my first review with the Scottish Social Security after being on PIP for a number of years (and reviews).

EdibleFuchsia Feb 27

@FionaCraig thank you, that's very kind of you to pass on your support. Hope yours goes OK too.

@EdibleFuchsia best of luck.