PIP

[Ostagazuzulum]

I know this is going to be controversial. That's not my intention.

I want to stress that I'm not having a go at anyone who gets benefits. I'm just curious about pip and how it's justified.

One of my friends today has told me that they were recently approved for pip in higher scale. Going to be getting around £700 a month apparently. She doesn't claim any other benefits. She has fibromyalgia. Her and her husband both have middle management full time jobs earning around £80k per year between the pair of them. They own their own home and she's very open about having around £12k in savings. Three children all of school age.

They're intending on using the money for holidays mostly.

I'm just baffled how it's justified.

She definitely suffers with the condition, can sometimes struggle with mobility. and you can see she's in pain. But what's the purpose of pip? Her condition isn't incurring any extra costs and isn't being spent on day to day help. Why do we have it for those circumstances?

@ Rosscameasdoody "When you look at a disabled person, usually what you see on the surface is the result of a lot of hard work which would leave the average able bodied person exhausted before they even got over the doorstep, let alone doing a day’s work as well."
It does leave me exhausted before I even start. I have a routine of sugar and Ensure to push me through the day, with all the issues that brings.

Working twice as hard and diligently as my able bodied counterparts I'm often still considered half as good and often paid less regardless of output. It is often illegally under the NMW and often done by paying me with one hand while taking it away with the other and pointing out I'm 'covered' by my PIP.
I automatically have to 'voluntarily' opt out of the European Working Directive in order to be allowed the work in the first place as I have to work for longer to do what the able bodied do.

I'm the poster who was being told by the DWP that I was set to loose my PIP at 65, and would lose my mobility payment but needed to remain available and able to work. I'm also the one who's frequently hit by the 28 days rule on hospitalization, and the must mange 28 days between hospitalizations rule to maintain PIP.
I've never been hospitalized for less than 72 hours, but annually do 4 to 8 week stints and then 3-5 day tidy ups. Yes you can reclaim, but the inability to guarantee my rent and CT as well as interest on loans to cover it, keeps me constantly stressed.

People do think the disabled should live only on microwaved ready meals possibly because many of us have little choice?

At various points I've been given 0 points for meal prep as with the right tools and if I had an adapted kitchen I could manage. (I don't have one and gave up with the hoops my council and landlord tried to make me jump through.)

Another decision is that because I could access public transport if I moved to an entirely flat area, or if a carer took me to and from bus stops and stations and put me onto the bus or train, and I had an electric wheelchair (I don't) that I'm considered able to access and use public transport.

Yet people still resent me being given assistance to make up for this sort of rubbish...

@Potentialmadcatlady* *I'm afraid I also wouldn't have believed assessors lied and bullied until it happened to me.
Assessor tried to cancel my interview as he wanted to leave early, after I'd had to be brought miles to get a weekend appointment because I work.

He then utterly humiliated me over bodily functions by the way he phrased personal questions that I am quite used to having to answer, but not have asked by professionals using pejorative slang language.

He also kept asking me the same question different ways round (six) trying to get me to stop giving the answer No. Eventually I said it didn't make any difference how it was put, I just couldn't do that, so the answer was always going to be a no, and could we move to the next question please?
He accused me of refusing to co-operate, kept saying he couldn't understand me (so how did he know I kept answering 'No' ?) and I ended up in tears.
Big heavily built athletic man then stood up towering over me and shouting about 'ending the interview' as I was "intimidating" him, while I sobbed from sheer stress, exhaustion and humiliation.

Thankfully I'd illicitly recorded him, and did make a formal complaint for others.

Well done for recording and making a complaint!!!
Thankfully this time round they did a ‘soft’ assessment so same questions on form but less detailed. I literally wrote same as before/no change/no on most of them. He got re awarded but only for five years which means, in reality, we have to go through it all again in four years ( if he is still here). All for life limiting, life long, well documented conditions which can only get worse not better..
The very worst thing about it all is people’s judgemental nonsense…

These posts are truly awful.
If I see another disabled person on my commute I know how hard it was for them to get ready that morning. I now ask people to move out of the access seats as I need the pole to pull myself up. People always say, sorry I didn't realise.
There is an allowance your HR can access to provide help to keep you in work. It is paid to the company and they provide a PA or travel campanion, food delivery etc. They can't spend it on anything else. It is up to £65k I believe. I'll try to find it.

I think some comments are harsh, you can be curious without being judgmental. My husbands friend popped round the other day and mentioned he was high rate pip both daily living and mobility. He has psychosis, depression and anxiety.

I used to be a PIP assessor (hated it) and for mental health reasons to score for mobility we were trained that the threshold is stupidly high, such as vomiting, passing out, needing prn medication and a carer to support you when faced with the prospect of going out. I think I was told that something as low as 2% of claimants can claim mobility for mental health.

So I was a bit curious how he got it, I was thinking has the criteria changed ? Is his mental health a lot worse than he let's on? Etc.

I obviously didn't ask, but i pondered it.

It wasn't judgment, I'm glad he gets it, he does struggle. just from my knowledge of the system (which may well be outdated now) I was surprised he got higher rate.

Really? You can't see how something with psychosis might struggle with mobility? Planning journies and travelling alone? A relative with psychosis used to get on random buses to wherever with no idea who she was.

@Elleherd was the complaint successful? I really hope so.

Did I say I say that?

Of course I can understand why someone with psychosis can struggle with journeys. No where does my comment suggest otherwise. 🙄

My statement was due to my experience of working in PIP, the threshold was so high, unless that person has been found roaming the streets unsafely and police were contacted, or unless they had a psychiatrist who categorically stated they can not go out on their own, they didn't meet criteria. This isn't my opinion, it's what we were trained. If i tried sending a report claiming higher rate pip for any other reason, the auditors would bounce it back telling me it doesn't meet criteria.

I actually did have someone who would roam and get on public transport during an episode, as there was no evidence of him getting in harms way, and he eventually made his way home, his report was bounced back as he wasn't a risk of self harm and could read directions on his phone.

My husband sees this guy approx once a fortnight, either gaming (at houses or conventions) or golf which he drives to.

I don't care that he's got it, I'm glad he has. I am just curious how he met the (what a previously described as "stupidly") high threshold.

Google "help filling in pip forms" there are lots of charities etc that offer help, usually a local one to you will be in the list. Good luck

MyOtherNameToday · Today 12:51

@Elleherd was the complaint successful? I really hope so.

It was successful in that it was decided I could apply for and undergo another assessment.

Unfortunately I didn't record the unprofessional icky language used about my bodily function, as started recording after he started humiliating me.

Lots of ag over me illicitly recording him, and threats of sanctions, but as I said back would they have believed me if I hadn't?
His initial report claimed I functioned without difficulty, the interview went well, without incident and notably that I was not upset at any time, which seemed an odd observation to need to make even if true.
Weirdly it also claimed I was well dressed and well presented. Actually being a weekend and running late, I was in what wasn't in the wash (rough stuff) & wellies, as didn't know my appearance as physically disabled was relevant!

Was put to me that I 'might be making things up because he'd seen through' what I'd said about my disabilities. (Scans, mri's and consultants reports which he chose to not look at, clearly state otherwise!) Assume that was from him.

No idea if it stopped him from doing similar things, but hope at the least it granted a review to anyone else who said he'd done it to them.

Do you mean the "access to work" scheme?

No idea why your friend with a constant life limiting condition gets it why not ask her how the condition effects her and can you help in any way

@Nepmarthiturn i just checked, it is the access to work scheme. I don't know anyone who claims it but I was signposted by my HR director.

I accompanied my relative to an assessment. It was approximately half an hour long and the assessor didn’t examine her physically and actually never touched her. Yet, on the assessment report, there were detailed results of so called physical examination including the degree to which she could bend her knees, flex her hips and rotate her ankles. All of which were noted as normal, despite the fact that she has two congenitally deformed hips and both ankles were surgically fused to stop degeneration due to arthritis, so immovable. The DWP cancelled her tribunal date when they realised she intended to fight all the way, and awarded her the right rate of benefit along with back pay. I think that says it all really.

@Elleherd have you applied for NHS Continuing Care? Daily Blood pressure and heart function monitoring, assessing and treating pressure sores and broken skin and applying dressings, physically moving fluid from you legs with ice and massage, recalibrating devices, assessing and dressing broken skin on your toes are Nursing not social care tasks. If you can't take adequate nutrition until later in the day you are at risk of low blood sugars. You mention you need similar care later in the day. I assume as you have a catheter, dressings and continence aids prescribed you are in touch with the District Nurses - get them to do a screen (you absolutely will screen in for a full assessment) and get legal advice and even representation at the Assessment meeting. CHC (never mind PIP) is exactly for people with needs like yours. Good luck.

Firstly, I agree whole heartedly that your sister should get POP and it's horrendous that she doesn't.

I just wanted to explain how someone could be in the situation that you described, working full time, going to the pub and get PIP.

My Ds1 has autism. He gets standard rate care and standard rate mobility PIP. He's at college at the moment, studying his obsession so he can do that ok. He could in theory work full time as long as he had breaks to do his obsession during the day. He has to be taken to and from college and everywhere else he goes because he can't cope with public transport. He was invited to someone's birthday celebration last year for the first time since people did whole class parties. This person also has special needs. His dad has to drive him everywhere he goes. I still have to tell him to wash, brush his teeth etc. If he goes somewhere like college he has to be picked up at the exact right time as if his Dad isn't there he will go wandering all over the place trying to find him. He can't remember to charge his phone or take his phone with him by himself. To someone who doesn't know him he looks very independent and not in need of PIP but there is a lot of help going on behind the scenes that most people don't know about.

I refer to it as ducks! Lots and lots of paddling underneath the surface by carers ( me in this case) so that the person with disabilities can have as good a life as possible. No duck paddling results in failure and huge problems…. Those people without a duck- dear help them cause the system doesn’t make it easy…

I have lots of disabilities but the main condition I claim PIP for is Epidermolysis Bullosa Simplex.

EB is a rare genetic disorder. There's about 500k of us worldwide and about 5k of us in the UK. It causes fragile skin which blisters and tears easily. I have the mildest form and my blistering is mostly localised to my hands, feet and mouth but I also get blisters on my thighs in summer and around my bra.

It affects my ability to walk. I can physically walk but I can't do so reliably, safely and repeatedly. If I walk too far one day I may not be able to leave the house for days. Walking is painful and I need to use aids to do so - dressings to reduce blistering and dressings to cushion blisters. The blisters are not self limiting like non EB blisters, they grow and grow and need to be lanced, repeatedly, which is bloody painful. I also have to alter my walk to avoid putting pressure on blisters, e.g. walking on the sides of my feet. I have to pace my walking and plan ahead. It's worse in warmer weather. I might fancy a trip to the shops on Sunday, but I have to go to the office on Tuesday and the doctors on Thursday and therefore need to save my feet. I sometimes go a week or more at a time without going out in hot weather.

I claimed PIP, with support from Debra, the charity for people with EB. I supplied a lot of evidence, statements from people who know me, like DH and from my community support worker from Debra. I supplied details of my reasonable adjustments at work, copies of my letters from the Rare Diseases Centre, copies of all my prescriptions etc. I was turned down.

I requested a mandatory reconsideration. The person who looked at it rang me up, clarified a few things with me and later awarded me 2 points for care and 10 for mobility. That means I get lower rate mobility at £26.90 a week.

It's been a god send. I have to wear special (expensive) silver socks in warmer weather. My dressings and creams for my feet mean my socks wear out much faster than normal and need to be replaced often. My footwear choices are limited, can't wear boots etc as not breathable. I basically live in skechers trainers. They wear out much more quickly than normal and need replacing often, partly due to dressings and partly because of my odd gait.

I also need to take buses and taxis for distances most people can walk. PIP means I can 'prove' I'm disabled. I can now get a disabled person's railcard. I can also get a freedom pass from my local authority so my buses, local trains and trams and the tube are now free. I can buy as many shoes etc. as I need without worrying about the costs.

I don't tell people I get PIP and this thread is exactly why. People only see me on my better days, the days I'm housebound for days on end, they don't see. The days I am crying with pain because my feet are dreadful (my record is 16 blisters across both feet, some about the size of a £2 coin and some between my toes). My DH does a lot of errands for me. Sometimes I have to bath as my feet are too bad to permit me to stand in the shower.

But I'm young, I look put together in public and I work full time, mostly from home with occasional days in the office (I have reasonable adjustments for WFH when I need to). So, I'm sure on the surface I look fine and like a piss taker for claiming PIP.

Please don't get this thread deleted or comments deleted.

It should stand as evidence of what some people really think.

Could be a useful link tbh.

This thread took a dark turn, crikey.

I haven't asked for it to be deleted. I was just sad and disappointed at some of the awful comments.

Wow, this thread took a turn.

mellowyellow, your sister sounds eligible for PIP from what you say.

a microwave meal doesn’t meet the standard specified by the DWP for the task, which is ‘a balanced meal prepared from fresh ingredients’ .

Going to work doesn’t mean at all that a person is able to complete the tasks to the required standard.

There are some very ableist views here. The system for claiming PIP is terrible. Outcomes are inconsistent. Assessors do lie and cheat. The DWP behave illegally. This is in no way the fault of anyone who has been successful in claiming and putting disabled people against each other detracts from the real issue.

We’re not playing disability top trumps here. The issue is with the system.

How ironic: writing personal insults calling me a "hypocite", "horrible" and "nasty" and "judgemental" and then claiming I have "a tendency to be nasty". 🤣

My responses weren't to the OP. They were to horrific posts by other posters.

I can respond to any part of any post I choose to, thank you, particularly when it is making unpleasant insinuations that disabled people can't possibly have high care needs and manage to earn a decent salary and that there is something suspicious about this. If you were such a person, as you claim, I highly doubt you'd have written what you did.

Relieved to know you won't be responding to me anymore with further unwarranted personal insults. That's good news.

@thankyouforthedayz Yes. I was started down the CHC route, but it was decided home care with visiting healthcare workers on a needs basis, was more suitable. Hence I have the bed and some bits funded, but a lot's allocated to my PIP.
Care's very rationed here, and basic quality is an issue alongside so much emphasis on ensuring fraud prevention, that everything must center around that, rather than needs, even when scoring highs and lots of moderates.
Both Care commissioner and council are beyond loathe to issue personal health care budgets, as are the council with personal budgets for home care packages.

Lots of care companies here say their employees are able to meet basic nursing care needs, the reality is another story and the bar on what's acceptable is low. General expectation is swap your PIP for their services or find someone to take carers allowance and top it up, and in both cases, patchwork nursing care to back it up, with fraud prevention being the constant concern.

So much of what was assessed as needed just never materialized. Other parts became a minefield such as adaptations to the home which I was green lighted for but could never make happen. Working and my refusal to have males in to change my catheter etc throws up another problem (tbf that's entirely on me) and beggars can't be choosers etc. I know the theory of it all but the reality makes getting high rate PIP look easy. The whole system is broken and in the end the fighting takes more toll than accepting whatever you can get out of it.