Pip review - is this normal?

Hi all, I'm confused by my pip review. My pip is due for renewal/review Nov this year.
In April I got texts saying a review from would be sent out to me, I've had multiple texts about pip review due saying form will be sent or someone will contact me but nothings arrived. They've got my correct address cos I got a letter in spring saying my review was soon and that a form would be sent but no form was sent.
Then on Friday last week (June 27th) I got a text in the morning that someone would be ringing me today, Friday afternoon I get a phonecall to "confirm my availability" for assessment today (Monday 30th). In that call on Fri I mentioned that I'd had text n letter saying a form would be sent, so a local chairty could help me fill it and I'd been collecting evidence from GP and such, but no form received yet. Lady on Friday said not to worry, they'll explain on Monday (I suspect more to get me off the phone than anything else, she probably had no idea herself or who to refer too, but that's an assumption on my part idk for sure).
This morning (June 30th) the lady rings me 8:55am. I explained my confusion and she says sometimes they don't bother with a form and just do the review over the phone, all she knows she that she's got to ask me questions and mark my answers. She's kept asking questions about our fibro and seemed irritated when I explained my mental health diagnosis are more disabling than my fibro even though that often leaves me bedbound, it was like she didn't want to discuss mental health only physical health. But she wasn't unsympatheticnin tone, didnt rush me persay, she said she had 40mins to do the assessment but we were talking for two hours, cos of how complex my issues are and her not wanting to rush me, said she wanted to do my assessment justice. But I definitely feel she didn't write everything I said, I could hear typing at times but I was saying alot and her typing wasn't as much as my words.
And when she finished her questions she told me they'll make a decision about my award in 6-8 weeks. I said is that normal, I've not been able to send the form, not even received it, not been able to send any evidence from GPs or OT or witnesses, seems suss. I felt unprepared, caught off guard and if this award isn't granted I'll feel cheated n tricked, I already suspect that. I reminded her that there is no cure for my mental health disabilities, no resources for it in my location either, online online peer support as its so unknown and unsupported in the uk, and even with pip I can't go private cos that's £600+ plus per session for a specialist in my disorder. Plus travel cost of going from north of England to south every week for that, cos no specialist in this disorder north of midlands, most in London. And even then only about 20 so specialist in the UK, waiting lists are years long. NHS n pip won't cover that, so I'm forced to made best I can on what little I have and hope that I don't die before my kids reach adulthood. She said she noted that inbthe report but I didn't hear any typing. And she said that the form/evidence thing shouldn't be an issue but I can appeal if unhappy with the decision. The whole thing feels suspicious.
Something similar happened last time but differently, my first pip assessment hears ago. Last time I did send the form and evidence in but they said they lost it and granted my award based on the phone assessment only, so maybe the same will happen again, idk. But I think cos of how unprepared I felt this time I feel like I didn't do things right, like I forgot to mention my dislexia or local charity that was gonna help with the form this phone call. I fumbled alot. I was crying at the end, telling her I'm so scared to loose this pip cos people think my disabilities aren't real cos they can't see them or don't know about them, rare conditions, and how I'm already more scared to leave home cos of gov changes has lead to more verbal abuse when using disability facilities in public, it's scary. But without pip I can't survive, I need it to manage symptoms and fund supportive resources.
Has anyone else experienced similar for their review? I don't trust they're not being told to down play their reports to minimise who gets awards
Comments
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As I have just recently had the dubious privilege of the PIP process I can readily understand your justifiable stress and anxiety. The process you refer to, appears questionable to say the least. That being said, perhaps a way forward for you would to be to contact Citizens advice, Scope and of any specialist support services, either as preparation for a appeal or for future reference for your next review. I have found value in maintaining a running folder, which has original clinicians letters (never send originals) dairies and supportive statements. For future reference, give consideration to recording calls and or state you want a copy of their recording, it's your right. I am aware I sound cynical, but you must protect yourself
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It sounds like your form was ‘lost in the post’ on its way to you but you have a vulnerable marker on your record. If someone with a vulnerable marker doesn’t return their form their claim doesn’t close but goes straight to assessment. I think this is what might have happened to you. So, it is normal process and nothing sinister
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Hi @headachey
It sounds like it was a really stressful day yesterday, how are you feeling today?
Hopefully you won't be waiting around too long to hear about the decision and if the decision doesn’t feel right when it comes then you can challenge a PIP decision and then you can still send in notes or evidence now to back up what you told them0 -
Honestly I'm so stressed still, all yesterday, through the night and today I've been thinking "I forgot to mention this" or "I didn't explain that symptom" etc. Even though we had a long assessment phonecall technically, even if I'd had prep time and support, it's impossible to explain how impossibly difficult and complex even "simple" disorders are, let alone rare and complex ones or multiple ones and how they make each other worse. It's unfair that our ability to fund our extremely basic lives are in the hands of people without the knowledge, skills or time to do these assessments justice and trat us with dignity.
And it's scary times
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