MP wants to know people's experience of PIP

[lankou]

Laura Pidcock MP‏Verified account
@LauraPidcockMP 


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Posted for information in case anyone wished to respond to Laura Pidcock MP in time for the debate.




Delighted to secure a Westminster Hall debate on Personal Independence Payments (PIP) next Wed 31/1. As debate is focusing on claimant experience, it would be really useful if people could share their experiences of the PIP process below or email laura.pidcock.mp@parliament.uk

[Sunshine Meadows]

For more information about laura click here https://en.wikipedia.org/wiki/Laura_Pidcock

I think there is a problem in the way there seems to be a lot of people who don't talk about claiming PIP unless they are denied and need help appealing etc. I don't know if the stress and worry I feel about my up coming claim because of how much I have read here and elsewhere about PIP will actually cause me to over complicate the way I fill in the form and result in me getting a negative outcome.

[JLR2]

Well there's a problem, many who will be looking to claim Pip will be coming from being on ESA and Income support before that. With this many claimants will have had years of filling in forms and describing their disabilities to the point that they may well come over as too clued up on their disabilities or clever by half in their providing detailed claims. Some might face decision makers reading these forms who decide that because a claimant has explained in unambiguous terms just how serious their disabilities are they simply cannot be that disabled. It's a bit like the claimant whom manages to find the assessment centre or gets into the centre having crossed the centre's car park before nightfall.

I can't mind where it was I read it but I do mind reading of an assessor whom decided, in their own opinion, that a claimant in front of them for assessment was not trying as hard as they could to complete the movements being asked of them. In effect the claimant stood no chance from the outset as had they tried any harder they would have been failed as appearing able to do something which more than likely they would suffer from having done once back home and out of the sight of the assessor.

Again I have read of claimants being advised to provide as much evidence in support of their benefit claims as possible but how many times have we been left with the real impression that the original evidence provided was itself not read?  Begs the question what's the point in providing more paper based evidence, Doctor/GP/Hospital Consultants, if likelihood is that too will be ignored?  Chances are many DMs will just ignore any and all evidence presented with the idea of compelling/forcing the claimant to go through the appeals process, basically having the decision made for the claimant by others.

My heid's gone blank again

[Sunny Clouds]

I sent in a request for a reconsideration and I have the Royal Mail tracking receipt signed for before six in the morning, but the decision was dated the same day.  I refuse to believe that the paperwork was processed through the system from the post room, scanning machines, decision maker's desk, then all the original paperwork re-read plus the extra stuff, total 30+ pages of form, over 100 pages of extra info and evidence, then the decision made and typed, then the letter printed before close of play.  Or do they work up to late evening?

The reality is that they didn't read most of it, they skimmed it.

But what terrifies me is that they've used the fact that I write so much as a reason to say I can communicate ok (though how being able to write reams of stuff with obsessive-compulsive headers, headings, sub-headings, footers etc. amounts to being able to do the bit of communicating that involves hearing they didn't say) but that was the whittled-down version, so how the hell am I going to put  my case to a tribunal?  I can't even answer a simple question without a tiresome explanation most of the time. 

And I need hearing aids, but my NHS phonak ones are so utterly awful that I've stopped wearing them.  They distort the sound so much that I wasn't picking my own name up in hospital waiting rooms.  They've given me terrible tinnitus and hyperacusis.  I wish I could go back to older ones.  Even the basic analogue ones were better than these.  So you can picture it.  I need points for needing hearing aids but the only aids I now have make things worse so how do I prove I need them?  I think I reasonably need reasonably good hearing aids, but since all the NHS issue me with is these Phonak ones that distort sound, turning all the 's' sounds into 'sh' sounds by shifting the pitch, I've no idea how I'll even cope in the tribunal.  My BSL is basic and rusty.  All I can do is to ask people to shout.  I can't imagine your average judge being too chuffed at being asked to shout.

[ally]

Sunny I was reading somewhere about someone with hearing issues shouting at a tribunal  as he can't pitch his voice.  Ok, the judge didn't like it, but, once explained why it was happening, it seemed to go in his favour.  Make sure they understand the reason why you need it.  As for the hearing aids. If it were me, I'd return to the NHS audiology department, and, insist they change them. Make them spend some time with you,   Explain why they're not suitable, and, ask if you can try different ones to see if they help.  My husband has recently been diagnosed with a hearing loss.  Our ENT seems willing to allow the above.  Do this before your tribunal, and use it as evidence of your hearing issues.  One thing I have learnt being as I am.  Unless you force yourself through the NHS system you'll get nowhere

Another suggestion.  Go to a private aid dispenser, such as Specsavers.  Have a hearing test with them, and, ask for a print off.  Try their hearing aids.  If any work ask for a prescription.  Go back to the ENT, and see if they have anything on the NHS that's similar.  You can use all that as evidence of your hearing problems.  If the NHS don't have anything similar, or, suitable.  Then you can use that as further evidence.  Although your hearing could improve, it can't,  due to the cost of private hearing aids , which are unaffordable to yourself. 

Although I'm profoundly deaf, unfortunately I suffer from tinnitus too.  For obvious reasons I can't use maskers. I'm stuck with it.  From what I've read, listening to  Whale music, or, water lapping on a shore through headphones  seems to help some people, as it acts as a distraction of some sort.  Feel free to dismiss the above, or, if you've already tried it, and it hasn't worked . At the moment I'd dearly like to help you, but, i doubt my suggestions will be any help.  I really hope you get sorted soon.

[Sunny Clouds]

They are helpful.

Before I say more - I seem to have unintentionally derailled the thread.  I apologise.  But having started to, I might as well respond to Ally who's been so  kind.

I'm angry about the Phonak aids, but to be fair to the audiologists working in the department, as opposed to whichever unmentionable did the bulk purchase of the Phonaks, they did try some different ones before the Phonaks, but when they were issued, my tremor was very bad, so they had to find some that they have that can be adjusted so the volume controls and T settings don't work, i.e. so that when I put them in, I don't accidentally change all the settings and have to spend ages trying to sort it and the only ones they'd got that they could do that with were the Phonaks.  I don't have much of a tremor now, but it's caused by neurotoxicity from my medication, so varies according to dose and so I still have that need.

But I do think it's worth following a lot of your advice.  I need to get it together to go back to the hospital audiology department and ask for more help.

About getting a test elsewhere - I used also to get hearing tests sometimes in a university teaching department, but  I don't want to go back there because it was the same university that told me my night blindness couldn't be fixed, which it could.  However, there must be other places I could get a test, whether that's somewhere like Specsavers, or whether it's a different teaching department.  So thanks for the prod.

Having said that, I did a double-take on what you wrote, then remembered that these things vary from region to region.  Where I live, people over a certain age can get NHS hearing aids from Specsavers.  I could ask my local Specsavers what sort of aids they issue.

[ally]

Thanks for the information on Specsavers doing NHS aids.  I don't use HA as they're of no use to me.  However, that could be useful for my husband for future reference.   I really do hope you get yourself sorted sunny.  I've been a bit concerned about you.  Due to reading this forum you get to know the regulars . .  When they go through bad times, I feel for them.  Take care 

[Sunny Clouds]

Thank you.  We're holding together, though, aren't we?

Last night an old friend I don't talk to much phoned.  She's terribly depressed and is going through the PIP thing.  I wanted to tell her to get lost because I felt I couldn't cope with her problems as well as mine, but as I found myself saying what I hope were helpful things, I found I was also telling myself.

Like reminding myself that a couple of people have said that with PIP appeals you can submit further evidence after the date of your tribunal application, which takes the pressure off.  What wouldn't have been evident to the DWP DM but would be evident here is that some people, like me, actually prepared a chunk of what we'd say months or years in advance of the benefits migration.

In my case, when I got the DLA -> PIP letter, I left the request phone call until the last minute, then got an extension as well, so I dragged out the application process to well over two months, building on what I'd already prepared well over a year earlier.  Then with the mandatory reconsideration, I got extension after extension.  So from letter to me to my final evidence submission for reconsideration, it was about 9 months.

But if my friend hadn't phoned in a terrible state, I wouldn't have managed to get through to  myself the fact that actually I've loads more time to gather extra evidence for appeal.

So I've been in a terrible state and haven't felt so depressed in years (literally not this bad since the early part of the century) but the sense that I'm not alone is keeping me going or, being really crude about it, keeping me alive.

[Sunny Clouds]

I suddenly realised that could sound like "If I don't keep getting support, I'll go under."  But although Ouchtoo is my main source of disability support, I have some RL friends going through benefits claims, renewals and migrations; and there's another site I go on, Mustardland (which is mostly refugees from the old BBC Archers messageboard) also going through the PIP thing.  They're lovely and there are threads in the forum there called 'The Village Hall' and in 'The Bull'.

So it's  a bit here, a bit there.

A parallel.  I have a friend in her seventies who's in crisis because she's got early stage dementia and needs care and is getting into debt paying for it.  I realised that no one has applied for Attendance Allowance for her.  "She hasn't got a formal dementia diagnosis" I was told.  I pointed out that the allowance is for needs and she has repeated falls requiring hospital treatment and that she's also got bipolar diagnosis going back many decades and she's horribly depressed.  Duh!  It isn't that nobody cared, it's just that nobody thought of it.  Now all that's needed is to manage to get hold of her since she can't get to the phone fast enough and can't remember to call back people who leave messages on her answering machine (which I have done multiple times).

So we work together.  I'm terrified the country is 'going to hell in a handcart' but people have thought that before, and whether it is or not, I'll do my best to get through the nastiness of things like PIP applications by a sense that we're working together.

Besides stuff the [nasty description] people responsible for PIP.  I'm going to make sure for the sake of my fellow veterans (and civvies with industrial injuries) that I get a tribunal ruling that evidence you didn't have an impairment before you started doing something isn't evidence you didn't have it when you resigned.

[auntieCtheM]

Sunny, are you taking time out to rest and relax.  You sound as though you are going through this like a fast train.  Try to slow down occasionally, won't you.

[Sunny Clouds]

I'm trying but the PIP thing's got to be in next week and I'm freaking.

I have a number of 'telephone' friends I've had for years where, as friends do, we support one another, but over time, they seem to have dropped like flies, more and more succumbing to dementia or dying, but since I'm rarely socialising, I'm not making new ones.  I also have a few 'physical' or 'messaging' ones.

I've precious few friends left to whom one of the following doesn't apply:- dead, demented, too physically ill to communicate, too physically impaired/disabled to communicate, too mentally poorly to help as opposed to dumping their problems on me...

I had ages to prepare the PIP application and precious little time for the tribunal paperwork and I'm freaking and am struggling to find ways to calm down.

I used to like going for walks round here but the pavement parking's got out of control and the professional street beggars are aggressive enough to be scary, some with legs stuck out for me to trip over and some with dogs off leashes that leap up at me and trigger my nystagmus so I stumble.  I've fallen in front of traffic more than once in recent months.  There are two that think it fine to step out in front of people to bar their way when crossing the road in order to demand money.  We have a public space protection order but not enough police to enforce it.

(The professional beggars also make me angry because they fake being homeless whilst the real homeless can't get a pitch to beg and are sleeping on the ground in the graveyard until they end up under the ground there.)

So I'm stressed and freaking, which is what I'm sure the politicians are perfectly happy with. After all, if I go completely over the edge, I shan't be able to cope with an appeal, and it won't cost them anything in terms of care because there aren't enough psychiatric beds even for those that desperately want to be there, which I don't.

So there you go.  I'm not Sunny Clouds, I'm a thunderstorm alternating fiery lighting plus earth-shaking thunder with downpours of rain. 

What's taken me by surprise is that I've never in my life experienced so much anger and bitterness before.  Countless government/public departments and services I wish I'd sued.

Reason tells me that it'll ease; emotion tells me I'll never forgive 'them'.

[Monic1511]

Sunny
re your friend in the early stages of dementia, is there any support from the local alzhiemers charities  - google them to see what they can do in your friends area.   Yes your right she needs to claim attendance allowance and she doesn't need a diagnosis to get AA, she will also be entitled to a council tax exemption as people with dementia are exempt if their doctors signs a form and they get AA.

remember to look after yourself though
Monic

[Sunny Clouds]

I hadn't thought of dementia charities - good idea.

I've already tried to get a council tax exemption form, but although the lovely man at the council said he could send a blank form to any address in town, he didn't realise it comes off the computer with the address & reference of the person that asks for it, i.e. me, so I need to start again!

You can get blank ones online but not with my software, you need, I think, Word and I use Libre.  I wish they'd do it in pdf.

The thing I really need to sort for her is that I know that these days GP patients over 65 are supposed to be allocated a key worker (although I may have the terminology wrong).  If I can fix her up with one, I can sit back a bit.  She's going bust paying for incontinence pads she can get on the NHS.

But thank you for saying to look after myself.  I'm trying to remember that.  After reading what Auntie said about it earlier, I went and did some sorting and organising.  I'm hopeless at housework but I'm an obsessive sorter.  I feel much better for it.

But I know you all know me well enough to pick up the vibes.  It shows when I'm stressed.  I'm long-winded enough at the best of times, but when I'm stressed, I go on and on and on.  (I talk to myself as I wander round the house as well.)

[Monic1511]

Talking to yourself is fine, it’s when you start to argue with yourself that we need to worry 

[Sunny Clouds]