Important info for PIP Reviews Extensions... Y... - Behçet's UK

Behçet's UK

5,378 members4,387 posts

Important info for PIP Reviews Extensions... Your bit is NOT extended ; its the review date their end only that is postponed.

ShortLady profile image
4 Replies

I was expecting forms for my PIP review to arrive last year as my claim was due for review in Jan 2021. It's a nightmare as there are huge mistakes on my medical record and I've got loads of conditions diagnosed over past 25 yrs or more plus I can't use my hands and they insist on handwritten forms only but trying to get formal assistance takes months with backlogs of appts everywhere even before Covid.

I received a letter before Xmas and was delighted they had told me that due to Covid, they were so far behind they were extending my review date to Jan 2022 and I hoped by then, perhaps my very strained GP surgery would be willing to talk to us on the phone or even face to face, plus I've acquired a few new conditions over the past 12 mths diagnosed via text but they're so under strain, there isn't even a chance to talk to a GP about medical things. They are constantly asking people not to bother them about admin and forms but the GPs there don't know me, my usual one retired, then was replaced 4 times since and I've never met any but I would need to liase about PIP stuff or risk them leaving off conditions not showing up in the DB but are on my paper records.

However, I got a letter today saying that I need to complete and return my PIP claim and must reach them by 2 weeks time, or my PIP will stop and I will have to restart a new claim all over again. It completely contradicted the extensions they were sending out. After holding on the phone for 3 hours straight I got through. It turns out that the extensions they posted out are not for us claimants, they are covering themselves for their delay in decisions their end. Therefore if you've received an extension, don't be fooled into thinking it gives you time, it doesn't, and in fact instead of sending your forms out with about 4-8 weeks warning, they are sending them out by 2nd class and my letter took 14 days to reach me. I was told today that 2nd class Royal Mail is taking anything up to 3 or 4 weeks to reach its destination so I should think about sending my completed 36 page form back 3 or 4 weeks before the arrival deadline. So that means if my forms are due back on Mar 1st, then I should be sending my forms back 2 weeks ago, 2 weeks before I even received them!

Added to my woes, I had a vaccine yesterday and started feeling very unwell over night I think because I had quite a bad fall and ended up in the gutter yesterday unable to get up with no power in my legs. I hardly walk anywhere because it's so painful, legs don't work and I've had bad accidents and broken fingers etc and even severed a thumb off. Feeling rough from a vaccine, or any needle, I expected, it's not drastic if you've got nothing to do and recovers if you remain unstressed. Except now I've got to run round finding all my documents (with my hand disability, I can't deal with paper, and my stuff is in a mess because I had no idea an extension was just for their decision and not for my admin/forms. Many of my consultants this Yr just cancelled appts, didn't make new ones and I haven't even got the entire proof I need currently. And I can't just copy old stuff because I've got new conditions and to leave them off could do me out of money but also look really flaky. I begged for an extension, got one to the 14th March as they'll only allow 1 x 14 days max. I was urged to do it ASAP, and send it at least 3 to 4 weeks before the deadline as Royal Mail are so slow now.. 3 or 4 weeks before March 14th is this Sunday, its just not going to happen, and I really can't be doing all this in a flare up, and after a vaccine. I've got shed loads of hospital appts coming up!

Anyway, I don't need help or advice, but I just wanted to warn people who had a letter saying any PIP award reviews are delayed until 2022, it is only their end that's delayed not yours. You'll still have to plan getting your review forms back at the same time you normally do but it's complicated by the fact they only send them out by 2nd class which is taking 2 weeks and they only provide a 2nd class envelope. Be warned though, I paid for an urgent delivery to my cousin recently, it should've been next day or 48 hrs and it took 3½ weeks to arrive. PIP Dept is only sending your review forms to you 4 weeks before they are due back, they will probably arrive 2 weeks before the deadline to get them back by. They sent my pistpinement/extension of my review to me in Oct and it arrived in Nov. I wish they'd just sent the forms and told me to do them as normal. After you've returned your forms, and are waiting for a decision, that decision could take a year for existing claims and while you're waiting you'll still get your last year's amount.

I really wish I could do without PIP but clearly I can't. My GP surgery is only 5 mins walk, and couldn't do it without a lot of pain and unsteadiness, and thank goodness a man saw me fall and was able to pick me up, which was a selfless thing to do when were not supposed to be touching. So, also because I'm incontinent of bladder and bowel, I need my PIP to get to hospital which is 20 min walk, bus, train, tube, train, and then 20 min walk away. I go by cab, £45 there and £45 back. Before I got PIP, I fell fown the train stairs and hot trampled, then at my apot because I'd not yet been diagnosed with anything, the consultant said there wasn't a medical reason for it he could think of... But even with PIP it only covers one carer for 2 hrs a week for "hand tasks" and about one hospital visit per month. I certainly would love to just say darn it, I just won't apply for PIP because I'm sick of jumping through hoops, and I'm really not that bad compared with people in wheelchairs etc, but I can't wipe my bottom and the shower toilet is expensive to maintain, I buy all my own bathroom/kitchen aids and need taxis.

Written by
ShortLady profile image
ShortLady
To view profiles and participate in discussions please or .
Read more about...
4 Replies
Juliauk10 profile image
Juliauk10

Maybe ask your partner/carer to help?

RuthieN profile image
RuthieN

This depends on when your review was due. My daughters was extended last summer and we didn’t have to complete the review forms.

GP’s are still seeing patients so I’d did in and get your records sorted so you can complete the forms

ShortLady profile image
ShortLady in reply toRuthieN

I was told that anybody who didn't fo a review last year, or whose review is due this year will be receiving review forms. Yes, I too had a letter saying my review was extended to 2022 and that was a relief, but I still received forms without any warning and as the post is delayed, received my form as 12 days after being posted, giving me only 2 weeks for them to arrive back, but advised to post 3 or 4 weeks before the due date, which means I would've had to post it 2 weeks before I received them.I rang, saying before Xmas I'd been sent a letter saying my review had been extended to 2022, and they said extensions are not for the claimants, the extension is for the decision their end only because of Covid.

Regarding getting my records corrected, I could not get aGP appt. I even had a tumour last yr and was referred to hospital without ever speaking to a GP, had surgery, stitches, then could not get an appt to see a GP, nurse or PA at my surgery, I had to go to a private clinic or attend A and E. Every time I've attempted to get GP appt to amend my records, I am referred back to Admin who say they can't take off mistakes only a Dr can then when I try to see a GP they refer me back to admin. I even wrote to them and was advised, make an appt to see your GP after the Covid Crisis was over, My partner spoke to someone who just said Sorry, this is whats on her file, you can ask for a note to put on her record that she doesn't agree with a diagnosis, but we can't take it off nor add anything. They said I was diagnosed with depression/anxiety, but actually I was diagnosed with pituitary failure causing Diabetes Insipidus and excess weeing at night is treated with low dose of antidepressant that's used for bedwetting and my urinary symptoms. My record said I had median nerve surgery when I was 16, but I never had surgery. I got nerve damahe/ulcers after treatment for pancreatitis when I was 38....its like my record is so confused. Also I've had cellulitis, and my left side went numb and my back went, couldn't defecate, couldn't stand up, still unable to get spot with GP, but a nurse called to say maybe I need physio and I need to self refer, but she warned self referred physio appts are booked up until 2022. I've also got a bad bit D deficiency and abnormal bloods, just keep being sent texts to take over the counter 1000 units Vit D, except I've been taking 20,000 units for a year now.

It's impossible to get to speak to a GP, they are only open a couple of hours per day, deal with urgent and extremely vulnerable only, or press a button to send you a text. I had a text asking me to speak to pharmacist about my lack of Vit D absorption, pharmacist just sent a text saying buy over counter Vit D... And as far as my records go, it is not urgent. I live in a city overwhelmed with Covid and V variant cases, my GP surgery has about 200 and over GPs, most work from home without access to paper records, they can only go by what's on the database. I have asthma and cannot get inhalers prescribed because on the database they didn't include my diagnosis from 1992. If I get an attack, I must go yo A and E. My partner has told the surgery I have a spacer and a Blue, green, orange and brown inhalers here, they say nothing on record confirms that I have asthma, there's a shortage of inhalers so I couldn't get them anyway.

I would change GPs but I've investigated and people are getting much the same problem elsewhere. Our area is too big. And there are people cheating the system. Apparently, people had been turning up at surgeries last yr, faking or exaggerating asthma symptoms for themselves or their kids because they'd heard inhaling a steroid would help them if they caught Covid and experienced breathing difficulties. No doubt they got that nonsense online somewhere. But it's left people with mild or moderate asthma like me, nothing if we get an acute attack which does happen.

It's a mess. But I wanted people to realise that even if they've received an extension letter, it's only to warn a backlog at their end, they are still sending out forms and asking people to complete them with less than a couple weeks notice due to it being 2nd class post, but claimants still have to submit their forms, it's just the decision their end that is delayed/extended. And it'll be a shock to people if they receive it and only ha E a couple of days to post back. The longest extension they can give people is 14 days, which is not very generous considering the forms will arrive 12 days after posting, and ideally need to be sent off 3 or 4 weeks before the deadline. I feel to I'll to drag all my paperwork and find stuff, but if I don't complete in time, I'm told my claim will be cancelled and I'll have to start my PIP assessments all over again and not receive back payments for any gaps.

in reply toShortLady

Hi... doing my PIP ‘renewal’ atm, so up to date with some things.... apparently hough their letters say a month, their systems ‘ping’ it as late at 40 days.... so if you ask for a 14 day extension they then ‘ping’ at 54 days.... However... as we all know DWP does what it likes, so aim to stick to their written timetables as much as you can

Not what you're looking for?

You may also like...

Debbie

Do many people get pip benefits with haveing behcets disease I v e been on long term dvla and...

Suspected Behcet's

Hi, I haven't been diagnosed yet and have only just started on the path. Currently waiting on the...
daveholli profile image

Is it Behcet’s?

Hello! I’m hoping I can get some advice to see if I’m barking up the right tree.. I’m 25 female...
Char_123 profile image

Does anyone else suffer from cuts in their nose?

I have been getting these off and on now for a few years....was mostly in the summer but they have...

Going crazy

HI all, wanted to share my experience from yesterday. For those who's read my previous post, will...
Dolores81 profile image

Moderation team

TonyWT profile image
TonyWTPartner
UKADMIN profile image
UKADMINPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.