PIP

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

Do you mean the "access to work" scheme?

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.

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

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.

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

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.

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.

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.

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…

@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.

@ 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...

Wow, envying someone chronic pain is great. I have fibromyalgia and chronic migraines. Between both of those, I struggle every day. On a surface, I live normal life, while I changed jobs when we moved countries a while ago, I go on every day walks with my dog (who's an active and very energetic athletic breed so a walk up and down the road will not cut it for her), I run, do long walks, bake, cook, normal chores, my job is seasonal and summers can be extremely heavy, with 12 hours and almost zero break, so come November and December, I'm so exhausted I can barely move sometimes. But you wouldn't see it unless you know me. You learn to live with pain, with constant exhaustion and other neurological symptoms to the extent where when other people would freak out if they felt the same suddenly, you just get on with that.

OK, I didn't want to make this post about me, just trying to explain how people can claim those things and have genuine reasons for that, even though it's not obvious for others.

They do and they don’t. The assessors either make up rubbish or they are totally incompetent- not sure which! I worked for NHS at a high level before becoming a full time carer. I would never have believed that the assessors lie but having been in assessments now myself they clearly do. Or they are totally incompetent and can’t remember one assessment from the next.
For instance they said that my son was examined by them and he was able to climb unto examination table by himself- he wasn’t touched by them and did no climbing of any sort. They said he was observed drinking from a standard glass of water- he doesn’t and he didn’t ( he used his specialist drinking bottle). They tried to make him speak for himself and threatened to stop assessment if he didn’t. Until I reminded of the laws and that I was his appointee and could speak for him. They then threatened to end assessment unless he took off his noise cancelling earphones- he took them off one ear at my request for one question then put them back on. The assessor insisted on discussing his penis and some medical problems with it. All clearly documented in medical notes they already had and medical notes I brought with me from his consultant. His penis and its issues had nothing to do with his other abilities/disabilities and was clearly just the assessors way of trying to embarrass a young teenage man. I have no idea why and if we hadn’t been in such need for the benefit to continue I would have taken him and left at the moment.
The assessor spent their time repeatedly re-asking questions about his more minor problems in an apparent attempt to trip him/us up. They then said they didn’t have time to assess his major disabilities as the time was up. I refused to allow interview to end until they confirmed they were in possession of his full medical information and until they wrote down his full medical diagnosis (approx ten lines long)
My son was reawarded his benefit but in the letter the assessor said that his condition was likely to improve as he grew and matured. My son is life limited and his consultant literally laughed out loud and asked if the assessor thought they were God.
The money is not worth the constant hassle and being treated like a piece of shit but sadly my son needs it so he can obtain his education.
So to anyone on here reading this, who thinks it is easy money- go give your head a wobble

I’d advise anyone applying for PIP to look at this guide and also find a good benefits adviser to help with your application. The forms are long, and intrusive, and will be scrutinised for inconsistencies and contradictions in what the claimant says, and the contents will be used as a basis for the face to face assessment, so it’s important to get it right.

I’d also advise anyone who thinks applying for and securing a PIP award is a walk in the park, to look at the various guides available online, including the assessors’ handbook, which gives an idea of what disabled people are up against.

PIP isn’t about properly supporting the disabled. It’s a carefully devised points based system which seeks to minimise every aspect of disability in order to deny benefit wherever possible. And it’s usually the most severely disabled who end up falling foul of the system, because they’re the ones who cost the most to support.

You have to prove your impairment meets the criteria across a range of activities, and prepare to be challenged at every turn. For example. I once had a claimant turned down for the mobility component and awarded a low rate of daily living component, based on the fact that she had said she could drive. The assessor used the skills needed to drive to deny impairment in almost every other activity. The claimant had failed to mention that in order to drive, she had to have an automatic transmission and a car fitted with many adaptations to suit her disability, including full hand controls, electronic indicators and seat adaptors, so none of this was taken into account. It was resolved eventually but she had to go through the stress of applying for a reconsideration - which doesn’t just look at the bit you’re disputing, it reassess the whole award, so you risk losing what you’ve already got. It’s a nightmare and many people give up because it’s just too stressful to appeal on top of everything else they have to deal with from day to day. And it’s designed that way. If you don’t appeal it’s benefit savings by the back door.

This is why PIP assesses for fluctuating disabilities as well. The criteria state that the difficulties must be present for at least 50% of the time. What people fail to understand with fluctuating conditions is that you can be reasonably OK one day and completely incapacitated the next. They judge by the two hours sitting in the pub with your mates, rather than acknowledging the effort it takes to get there and that it’s a couple of hours of relief and normality in an otherwise very difficult life. I sometimes think there are people who really believe that disabled people should be institutionalised - out of sight and out of mind as they were 60 years ago. Some of the comments here just wipe out the hard work of many disabled campaigners over many years in getting their rights recognised and enshrined in law, and getting disabled people out of the institutions and into the mainstream as functioning members of society. The comments about ‘free cars’ and means testing all benefits say it all for me. The ignorance of the reality is breathtaking.

You said it better than I could. 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. As a benefit adviser I dealt with countless people in similar situations to your own and have tried to recount some of the difficulties I’ve come across. The fact that people keep quoting microwave ready meals, also makes me smile, because the PIP assessment doesn’t assess whether you can do this - it assesses whether you can prepare and/or cook a meal for one from scratch, using fresh ingredients. So again it demonstrates that people are completely clueless about what’s assessed and why, yet they feel perfectly entitled to comment on individual eligibility. It’s batshit.

Well said!!! It’s just a shame you have to explain due to the inconsiderate, Uneducated people on here and in real life.

People see my son going to uni and think ‘nothing wrong with him’. They don’t see that four days out of seven he is in bed, they don’t see his endless surgeries, his scars, his constant pain. They don’t see he requires a full time carer and batteries in his chest to keep him alive. God forbid that he decides one week to take some of his precious energy to go to sit in the pub with his loyal friends to see them f2f for a couple of hours, knowing that that means 48hours or so in bed recovering. That another week they take him to the cinema because they know he can’t go play football with them.
As I said before I will give every penny and more so that he doesn’t have to suffer/struggle and deal with idiot, judgmental people who think they know him and his life.
Going through the PIP process is soul destroying.

@MellowYellowWithaBitofPurple
Re your sister, I’m not being unsympathetic, just pragmatic about disabled life.
I was born with two disabilities and have collected others on the way through.

It takes time for disabled people to figure out their disabilities, the systems, what bits they can use and for how long, what they can and can’t rely on, and what work they may be able to do, when, how, and if the costs are worth it to them.
Don’t compare, many working disabled have come from where she is now. It’s like newish parents of two in the first year, comparing themselves to an experienced uber organized parent of six born over ten years, who makes it look easy because they’ve figured out systems, cheap au pairs, electronic calendars, and which battles to fight and how.

I’d advise sister to find a charity to help her fill out claim forms, and if possible is either gifted or seeks a loan for an electric run oil radiator, and an electric blanket. Both are cheap enough to run. Check her electric supplier and tariff is as cheap as possible. Hot water bottles are a Godsend. Layers, both with clothes and bedding is key to warmth. Woolly hat at night.
Other tips are focus on keeping one room warm. Create a false clingfilm ‘window’ with a gap between window glass and clingfilm (dry everything thoroughly first if possible) and make draft excluders (can be stuffed with rags, sand, out of date dried pulses etc) If it’s still well cold, place a towel or newspaper at the bottom of the outside of the clingfilm to collect moisture, + dry/ replace regularly to lower damp. (Everything I'm advocating I do or use myself. PIP only goes so far.)

@MellowYellowWithaBitofPurple

OK I’ll bite. I work, usually on low wage, and am on PIP.
Yes I have a ‘carer at stupid o’clock’ - 4am. Here's the highlights of any morning:

Her 1st job’s to administer medication then unfold my limbs. I severely stiffen overnight into a tight pain racked ball, and can’t move, straighten my arms, or legs or clunk my pelvis by myself, regardless of need. Often joints are partially out and have to be put back in, swollen ones have to be ice treated, (freezer and running it - PIP) and the fluid collected in my ankles has to be massaged up my legs.
She also has to sort out and re calibrate night-time devices and check heart and BP readings. (aids are NHS/PIP)
Next, my catheter bag (PIP) has to be sorted out and changed. I’ve suffered urethral necrosis (NHS) so there are leaks along with the need to clean up bowel voiding and it’s results, to be achieved so I can be transferred hygienically to my chair. (NHS) To make my PIP go far enough, disposable bags and tubes have to be cleaned and reused.
She (DWP) then has to get me to the bathroom and into hot water. (PIP) I’m still unable to move much independently even to save myself if things go wrong, and over time they quite often have leading to hospitalization, so it’s not only painful but stressful. The hot water combined with medication (NHS) helps get parts of my body working, but I can’t do it alone, and yesterday’s dressings (PIP) have to be removed before everything including hair, is cleaned. I’m then got out and towel wrapped. While I drip dry she swiftly strips the bed, washes down the mattress (hospital bed loaned by NHS) and puts clean bedding (PIP) on.

Then I’m put back onto it. She ensures everywhere is dry, does a visual check with paperwork, treats broken skin and pressure sores, and applies cream and dressings (PIP) where needed, especially undercarriage. Then applies cream and tapes (PIP)my big toenails, so when they bleed through being in my chair too long, I don’t end up upsetting others by blood dripping from my feet.
Then it’s a 300kj drink (PIP) and second round of medication. (NHS) By now I’m able to make coffee for myself in my bedroom. I’m dependant on her having filled the kettle, or on the bottles of water kept for if not, and due to a damaged pharyngeal reflex have to be supervised swallowing.

Then she helps me dress, including continence aids (PIP) and applies splints and support aids. (NHS supplemented with PIP) Then gets me into my chair. (NHS) By now I’m beginning to be able to move quite freely for me. That however doesn’t include being able to raise my arms high, reach behind me, or lift up a dead leg, and all of it adds to the pain. But I’m now ready to go out.

Lots of details I haven’t listed as we’d be here all day, but no holidays here, and I don’t have breakfast or eat during the day as I can only manage working by keeping my body empty of all but light fluids while in public. I can’t work every day and have to spend days in bed recovering from days working. (supplemented by PIP) Living in relentless pain and with broken sleep is part and parcel of disabled life. Considering when to end it is also part of it for many.

However, I also do DIY when in good enough shape, though not roofing! I have adapted everything I do to my level of disabilities. I can do many things when in the right state with the right adaptations and adapted tools, (supplemented by PIP) and things laid out for me.(though I pay with extra pain)
But, a few hours earlier and later on I will be entirely helplessly dependent on a (underpaid - DWP) carer (supplemented by PIP) and a direct alarm to fire service for my survival. (LFB & supplemented by PIP)

This is just what I go through in the first part of any morning to go out to work, launderette or shopping. It's taken a long time to get situations together so I can do this, but it still isn't reliable, and is a big chunk of every day alongside the getting to bed routine.

All you’ll see when I get there, is a woman in a wheelchair who could put a ready meal in a microwave if she can reach. (but may not be able to extract it and wouldn’t actually be able to eat it.)
Does that make me a "fully functioning" person getting PIP, in your eyes?

www.turn2us.org.uk/get-support/information-for-your-situation/personal-independence-payment-pip-assessment/what-is-the-pip-test

This is quite a good guide that explains a bit about the scoring system. If you can cook a meal but have complex bladder problems, you will score in one area but not another. Across the descriptors someone can easily manage one thing but not another.

Absolutely spot on. They’re not. It’s as simple as that, and the post you quoted is the perfect example of why people shouldn’t be judging those in receipt of disability benefits because what you see on the surface is rarely the whole story. As I’ve said before, unless someone lives live with the disabled person 24/7, is medically qualified to interpret their medical evidence and privy to the information on their benefit claim, they are in no position to judge - the claimant will have provided medical evidence to support their claim and in most cases will also have undergone a stringent assessment on behalf of DWP, so will be perfectly entitled to claim, despite what the average untrained and unqualified nosey Parker thinks !

The level of ignorance on the thread as to why PIP is paid, is breathtaking. It’s nothing to do with the ability to work - that’s a completely different assessment. PIP is paid in recognition of the extra costs of living with a disability, and uses the range of essential daily living/mobility activities to determine how severely the claimant is affected, then benefit is awarded according to the level of impairment.

The question of whether someone should receive PIP if they are working, or can enjoy things like holidays keeps rearing its’ head and is typical of the misunderstanding as to why it’s paid. The clue is in the name - personal independence payment. To allow the disabled person their independence as far as possible. For example the motability scheme provides a lease car in return for the higher rate mobility allowance - the payments cover tax and insurance, servicing and maintenance. It’s only available to those with the most severe mobility issues and it’s allowed many disabled people to work and be more independent in their day to day lives.

Disabled people are criticised for not working and claiming out of work benefits, and they’re also criticised here for claiming a benefit that allows them to be supported to work. So they’re damned if they do and damned if they don’t. The higher rates of PIP allow the claimant a maximum of around £700 a month, and many respected disability studies have pointed out that the true cost of living with a disability far exceeds that. So PIP is a contribution to that extra cost. Those disabled people who are able to work traditionally are among the lowest earners, so that contribution goes some way towards levelling them up. Why is this seen as a bad thing ?

Many people with severe lifelong disabilities like Spina Bifida manage to hold down jobs despite high levels of impairment that you wouldn’t know existed unless you actually see what they have to do each day, just to go about their daily lives. A lot have no control over bladder and bowel, are dealing with double stoma’s or have to self administer enemas in order to be sure of not having an accident at work, and the fear of it happening is always there. And when it does, it’s usually very public - meaning that the disabled person loses control in the presence of work colleagues who they have to face afterwards. Think about that.

What people see on the surface is rarely all there is and doesn’t begin to reflect the hard work done people have to do just to face every day and be accepted as ‘normal’. Next time you all find yourselves envious of the extra money (because envy is what it comes down to in a lot of cases) ask yourselves if you would want the level of impairment that goes with it. In the majority of cases the money is spent coping with the disability, so the person is no better off. Sorry to bang on but when you know the answer it’s hard not to press the buzzer.

If you are over pension age, and haven’t received it before, you aren’t eligible for PIP. You need to apply for Attendance Allowance.

https://www.gov.uk/attendance-allowance

My goodness this thread is a depressing read. The spiteful comments are awful to read.

Some posters on here would probably think my son doesn’t need PIP because he can get himself to college on time. What they don’t see is him setting four alarms to make sure he’s up before 6am - nearly 3 hours before he needs to leave. Then the countless reminders from me and DH to make sure he’s remembering to get ready. Then me or DH driving him to the station, helping him buy his ticket, and being ready to drive him straight to college if the train is delayed (which he can’t cope with, even if it’s only a few minutes late). And then me or DH fielding his numerous texts and phone calls during the train journey to reassure him. You would just see a young adult on a train going to college. He will never live fully independently. But that isn’t what you see.

The disability benefits system is awful and broken. But please don’t have a go at those who receive much needed benefits just because your family member doesn’t. We are not the people to shout at.

You keep saying you know that fully functioning people claim,PIP. This is not the case - your idea of fully functioning is based on what you see on the surface, not the full impact of the disability. The reality is that the assessment for PIP is harsh and it’s one of the most difficult benefits to secure - as anyone who has tried to claim it will tell you. I’m so sorry your sister is in such an awful situation but as sad as that is, it’s down to the assessors and decision makers assessing her case, and not the fault of others claiming PIP for what you clearly think are much lesser disabilities. I’ve tried to explain how the benefit works - not much more to say unfortunately.