Applied for PIP, AIBU to be scared of being laughed out the place?

[someoneneededyoubree]

I have debilitating Fibromyalgia.

I cannot raise my arms above my shoulders most of the time. Someone is now having to wash my hair and style it for me.

I now need help to get in and out of my bath/shower, of which I'm soon going to be renovating to fit my needs.

Apologies for being vulgar, but there are times where I cannot bend or move enough to change a bloody sanitary product. Yesterday I was in tears to my DMum because I was leaking but physically couldn't change myself. She couldn't get to me quickly so an amazing friend came over just to help me sort myself out. That wasn't just due to pain, for that I might've been able to bite through. But physically, I cannot do much when I'm at my worst because of muscle weakness/stiffness.

I recently dropped a pan of boiling water that wasn't even that heavy. Luckily enough I missed my own body and it dropped on the floor entirely.

If I'm visiting someone or out and about, I need to now visit disabled loos at times just so there's something there I can hold onto to lower myself onto the toilet.

I can no longer attend work and I'm on long term sick, I have been for a few weeks. Luckily they have been brilliant and are a huge company that support me to the max. However, it means I can no longer afford my old car and I'm now left stranded without, unless I have my DMum to help me get from A to B.

I have had to get shoes I can slip on as there are some days I cannot pull shoes on, and most days I can't bend for long enough to tye laces

I have applied for PIP and just waiting for the form. I'm so worried about what the assessor at the face to face will be like. I'm so worried she/he will tell a pack of lies, which seems to be the case for so many genuine people.

AIBU to be scared?

I just don't know what to do anymore. I really need the financial assistance. My DMum is a God send and I'm lucky to bloody have her. I'd be gone for if I didn't, I'm not sure what I'd do. From the outside I look fine, just very sore if I try and walk on good days. On bad days, I cannot walk more than a few steps and need my wheelchair. On other days, I have crutches. I have a DS who I'm tremendously lucky to have so much help with. He is an amazing little boy and I feel like I'm letting him down. But I know I'm not, he's bright and happy.

I have been told to include with the form -

•GP letter explaining how my condition impacts me
• A diary (a week's worth), explaining how I've been each day and how my condition has impacted me
• Letter from a consultant (fingers crossed I can get this in time)
•Letter from my DMum explaining how she thinks my condition impacts me, and how she helps me, such as helping me prepare a basic meal, washing my hair, on bad days, dressing my lower half

I am 20 years old and I feel so devastated that this seems to be my life, for now. The condition has been with me since the age of 14. It gradually gets worse as I get older, it seems.

Some times I go through stages where I'm feeling fantastic but I'm then slowly but surely back to square one, often worse off.

Some useful info on this thread and the previous one linked to in the OP.
www.mumsnet.com/Talk/am_i_being_unreasonable/3133923-To-think-that-my-PIP-assessor-has-deliberately-told-lies?msgid=74883343

The assessors don't make the decision though. It goes to a decision maker.

As with most other things some are better than others.

I've seen reports with things in like "you were observed to use a smart phone".

Funny, cos I attended that assessment and the person in question does not have a smart phone! It was an assumption on their part, along with some other assumptions.

But the decision maker takes notice of the assessors report and recommendations, I provided medical evidence of my MH problems, how they affect my daily life and the support I need. The assessor( who was a physiotherapist) reported otherwise and it was her assessment that the decision maker went with, totally ignoring the evidence provide and she added some extra opinions of her own too! How do you fight that?

@topbitch ring and ask the assessor's report a few days after the face to face. I received it within a week.

From the assessor's report you can work out the points likely to be awarded. It might go to a panel but every assessor's report I've ever seen has matched the award given.

I'm on a few Facebook groups for PIP claims (help and advice), and there are bucket loads of people posting every day. Usually about how the accessor has told bear faced lies! The biggest one to date yet was an accessor who put on the report "Z has no reduced mobility in her knees anymore due to wearing her son's shin pads in bed".

She even posted a pic of that particular point. Z doesn't even have a son

I just don't understand how any of this is acceptable. I remember watching the news as a little girl and feeling a sense of warmth and comfort that I didn't live in an unsafe country, I subconsciously felt safe and truly believed my country was the only country to take care of its people (I think I remember believing this because my mum told me we were the only ones with 'free' healthcare).

I'm not all that much older now, I'm bloody 20. And I honestly sit here in despair at times. It's ludicrous, the depths the system has sunk to. There are people with limbs missing, literally, that are being denied PIP.

I just don't understand it at all. It's like I'm being dared to be unwell. I and all these other people didn't choose to be so dependant.

I had a good career going, I thought I would have a lovely future. Yet I can't even reach for a magazine from the shelves in Asda anymore, to take with me whilst I wait to be seen in yet another GP appointment. I think of what my life should be like, and I shudder. I couldn't even pick my little boy up from a slide today, my mum did it for me. I'm extremely guilty.

Apologies for my unnecessary ranting, but I really feel penalised. The thought of the fight I most likely will have to endure frightens me, it frightens me because I wonder how I'll find the strength. But that's what they want, and I simply won't lay back and let myself be taken for a fool.

Ex husband messaged to meet up with me to 'talk about divorce agreement particulars'. Perhaps that's why I'm feeling so touchy

I never thought I'd be just turning 21 and divorced!

@dancingthroughthedark

That's exactly what happens to most people, the DWP's Decision Maker treats the Assessor's Report as The One and Only Infallible Truth.

How do you fight that?
Here in the real world, we know the Assessor's Report is not infallible and we get on and disprove it, comment by comment by referencing the reports we've already submitted.

You have to go through their process and stick to their often unnecessarily tight deadlines. (One month from the date of this letter, which you don't receive until a 2 week deadline, then find there's a Bank Holiday as well, so instead of a month you have only a few days. think ahead, plan ahead so their deliberate tactics don't phase you, send everything tracked and signed for.)

Ask for Mandatory Reconsideration then go ahead to Tribunal.
The judges, medics and disability experts at Tribunal are independent, they consider your case on the evidence you provide, if your case is strong, you have no worries.

It seems as though the whole system is designed to make you give up. Don't.

It seems as though the whole system is designed to make you give up.

If that's how it seems, then that's how it is. Again: prove me wrong.

I went to an appeal with someone. That too was horrific (and biased, and plain wrong).

Waiting to go in we were seated in the court's waiting area. A man in handcuffs was being led right past where we were sat (I mean inches away from us). A man in handcuffs.

I thought - what if I'd been here with my autistic son - he'd be terrified.

The "doctors" in the appeal disregarded the evidence the person I was accompanying had. They confused him - til he gave a "wrong" answer. Then dismissed his claim on the strength of that answer.

Don't believe people who says it all comes right at the end, if you go to the final appeal.

You will be treated as a criminal. And it may not go your way.

Theresa May goes to church of a Sunday. Why doesn't her vicar make her listen to sermons from those people who have been denied PIP despite being disabled? Those people she has made homeless? Those children who rely on their parents getting to a foodbank.

Foodbanks. FFS. This is the UK, not Alabama.

The PIP process is cruel, inhumane and needs exposing. And the MPs who voted for it should be named, shamed - and kicked out.

My son used to get DLA for life. He did manage to get PIP but, we were told, it will only be for 5 years (and they can call you to review and revoke it at any moment).

So apparently they now have the cure for autism.

I should add, their main stated reason for the 5 years' award when DLA was awarded for life? Because he might go to uni. His circumstances might change.

We put all over the forms - he is at uni.

THEY DON'T READ THE FORMS!

Or they are idiots.

We will be put through this hell again. And now I don't think people with autism are even getting it.

A man in handcuffs was being led right past where we were sat (I mean inches away from us). A man in handcuffs

We saw men in handcuffs led past us and seated a few chairs away when we had a 9am hospital appointment with a Consultant. We were in a narrow corridor opposite the Consulting rooms so they walked past inches away from us. Later when getting into our car in the hospital car park, BB space near the main entrance, we saw a large van a few feet away and several more prisoners in handcuffs were getting out of it and being led into the main hospital foyer.

The court where my relative's PIP Tribunal was held was in a city but it was not in the Crown Court where criminal proceedings are, it was in the County Court in an entirely different building a few streets away.
I'd read previous posts of yours saying you'd seen handcuffed criminals whilst waiting to go into a PIP Tribunal hearing and I rang the court in my area to see if that would happen there and they assured me it could not which was a relief.
Anyone with an upcoming tribunal can check which type of Court their case will be heard in. courttribunalfinder.service.gov.uk/courts/

My relative had DLA indefinite award. At PIP, they were assessed by ATOS as enhanced care and no mobility. At Tribunal the Judge awarded enhanced care and enhanced mobility with the wording "it is inappropriate to fix a term"
The meaning of that is explained here, we'll not know what happens in practical terms until 2027. www.disabilityrightsuk.org/news/2018/june/ten-year-pip-reviews-people-most-severe-health-conditions

I have ME and was awarded 0 points after my face to face, and that was with citizens advice helping to fill in the form.

Unfortunately I was suffering really badly with my condition in the time frame I had to appeal, and I wasn’t well enough to sort out getting back to the citizens advice to appeal, so that’s that. I guess that’s what they want :(

Thatchers
You can still appeal if there are circumstances like that. It is always worth going back to Citizens Advice for their help and advice even if you have missed the deadline. We recently helped someone submit a late MR request as there were good reasons for missing the deadline. It might still be rejected but then we will look at whether we can appeal. It is always worth pursuing it.

Within the Facebook groups I'm in for PIP, there is a vast amount of people being treated like they're claiming something they shouldn't at a tribunal. These people are only ever impacted by MH or autism, it appears.

One of the moderators recently commented that she's seen a growing number of rejections at tribunals. She works for CAB.

It's scary. What if you win at tribunal and get enhanced, even get a car. And then they call you back for a face to face in 3 months

People just have it taken away again. And again. And then maybe rewarded with a back payment in 10 months or so.

It's just so wrong. Why isn't there more people up in arms about the whole thing?

Theresa May goes to church of a Sunday.

Not the kind of church you go to ...

Why doesn't her vicar make her listen to sermons from those people who have been denied PIP despite being disabled?

Because most religion is about making the participants feel good about how well and how much they can ignore the tenets of that religion. If Christians were really serious about being Christians, every church would offer shelter, and every attending "Christian" would work to provide food and basis. If it's too much, they could always take a couple of hours a Sunday out to do it ?

Meanwhile, (for example) to no fanfare or Instagram postings, Sikh temples offer free food to all every day. Provided and cooked for by the congregation. Bloody immigrants eh ?

After submitting DWs form, we received an appointment for 7:45am, at a difficult to get to address in town. DS works shifts, and walks past that building every day. It's never open, and he actually tried it the time and day of the appointment we were given (which they didn't know we weren't going to attend at the time).

So a few weeks later, when DW and I were on simultaneous phone calls from Capita, it was no surprise that they were lying contradictory. I still have the recordings. One lady was apologising that the home visit had been cancelled with no notice (DW took that) meanwhile, I had already called them to note their non-appearance in case they tried to claim "we weren't in" when they called. The guy I spoke to was quite emphatic that they had tried to call (they hadn't) they had written (they hadn't) they had texted (they hadn't). Obviously they don't do email - far to convenient and useful in court.

DW (bless her) got the lady she spoke to confirm they hadn't sent out any notice. The lady did, apologising, and said "we only found out this morning, so we couldn't have informed you."

Anyone who tries to defend the process - let alone the political reasoning behind it - must be a DWP/Capita/ATOS/Tory shill. Again prove me wrong ...

I have fibro and get pip. No one has ever laughed at me. Try not to worry too much.

Anyone who tries to defend the process - let alone the political reasoning behind it - must be a DWP/Capita/ATOS/Tory shill. Again prove me wrong

You keep saying that. Repeatedly.

No-one on this thread has said that PIP is a great system and no-one has tried to defend it. Everyone agrees it's a dreadful thing to be put through.

I advocated for my relative with no CAB, no FB Groups, or any other help apart from B+W guide and Turn to Us online guide.

However, isn't it always the way that the loudest voices you hear on message boards online are from people who had to struggle immensely to have the awards they need, or who have been unjustly refused what they should have.

There are some people who have had a very good experience of the PIP system who I don't think should be shouted down, perhaps instead we should be looking at those peoples' outcomes, finding out what percentage of people overall have that experience of PIP and finding out how the people who are struggling to get anywhere can be helped to achieve a similar outcome.

Online support groups attract people who need the support, therefore the thing they're railing against is a common experience for everyone in that group, so it appears to be a fight by the majority against an impossibly difficult system.

In the interests of objectivity, I'd like to see independent figures of how many people have had fairly effortless PIP awards and how many have had a dreadful experience.

Does it only boil down to the Assessors in the F2F making so many glaring errors which have to be challenged, and if so, what percentage of cases are challenged on that basis?

From what I've read online, my personal opinion on that, influenced by reading so many unjust stories is I'd guess about 10% or less of PIP claimants sail through effortlessly and 90% have to fight but even then some (percentage unknown) have their awards taken away.

But I could be very mistaken in that conclusion.

You keep saying that. Repeatedly.

Because it's true. And repeating things (true or not) on the internet is a great way to get them to naturally rise to the top of a search engine. Especially on busy threads.

Thanks Emma, I think I’m likely to be on a hiding to nothing though as because there is nothing doctors can do about ME it’s not like I go to them regularly about it, or get medication or anything. So it’s basically just my word that for the last 4 months I’ve struggled to just do the basics of life, I don’t have any evidence.

Whilst the money would definitely be very useful, I don’t think I can put myself through the demeaning process again, it really took it out of me last time (the brain fog caused by the stress of it went on for days). And I do want to get better, and I think if I was awarded PIP I’d have an incentive not to want to get better, if you see what I mean. I have a friend who receives PIP for a similar condition and I think that’s definitely the case with her, and she’s always panicking when she is having a good day and goes out and does something that they will find out somehow and take her benefits away. I don’t want to live like that.

Blank Here's the thing, PIP groups on Facebook etc, don't just have people there that have joined because they've been turned down.

Actually, a lot of us are on there because we are just beginning the process, and if you've heard of PIP by anyone, you'd have concluded it can be a very tricky process, before you even pick up the phone to apply.

We then return/stay on the group and report back at each stage. We update people, etc.

Sadly, 9/10, that update always seems to be a negative one.

Luckily enough, the tribunals are more often that not successful. But that isn't helpful when your car has been taken away, or you win the tribunal, only to receive an invite to yet another Face to Fave, 3 months later.

The fight really does appear endless. And sadly for some, fruitless

someoneneededyoubree
Thank-you for that info, not being on FB I do miss out on hearing other peoples' experiences.

Relative has communication difficulties among a host of other things, previous nasty bullying by peers etc. so I just pulled the plug on social media and have never started on there myself.
When the DLA indefinite award to PIP was likely to happen I asked around friends and family and every one of them said FB support groups were probably the only way to get any help.

In my area CAB will not help with the forms until you are at Mandatory Reconsideration level, so I just plodded on on my own all the way to Tribunal.

I'm not surprised that most people are knocked back at every stage, seems to be par for the course until Tribunal.
The Judges are getting tired of DWP ignoring evidence.

I'm shocked that DWP would order a review within 3 months of an award by Tribunal, was there no time limit set at Tribunal?

It's very concerning to hear reports of the cases being treated poorly at Tribunal are Autism and MH. There's very little understanding of autism and the impact it has on daily living outside the Autistic community and I'm guessing it's the same for HFA and MH. People look at what appears to be a "normal" (hate that word) person with no outward signs of disability and assume they can do far more than they actually can.

Maybe one answer is properly trained assessors for F2F and specialists in the disability being claimed for to sit at Tribunals.

There is always a specialist at tribunals

The issue is at assessment level, I suspect they don’t have (or want to spend) the resources on specialists at that stage

There is always a specialist at tribunals

Sorry, what I meant was a specialist in autism if that's what the claim is for, ADHD if that's what it's for different types of MH etc.
Our Tribunal panel was Judge, GP and a Disability Expert but it wasn't made clear what area of disability they were expert in.

The issue is at assessment level I agree.
I worded most of my rebuttals along the lines of the assessor misunderstood, the assessor did not appear to know etc.