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Share your dilemmas and get honest opinions from other Mumsnetters.

Pip nightmare

85 replies

newlifenewme2020 · 24/01/2020 07:57

Posting for traffic
I have seizures so I claim pip. I came up for reassessment and my first appointment was in December. We were just walking into the assessment centre when I got a phone call cancelling it.
The next appointment had to be abandoned because I had a seizure half way through. When I have a seizure I lose my memory for a few hours so not point in carrying on.
Yesterday I had my appointment and had a seizure again so it had to be abandoned.

My mum on the advice of the assessor rang the DWP there and then and asked if this happens again (highly likely as I had fits in stressful situations) could she speak for me.

Turns out yes she can but this process which takes months to set up and my money stops on the 11th March no matter what. They suggested I make another appointment and hope for the best. They can’t do a home appointment in time for my money to continue

I feel sick. The first appointment was them cancelling and then the other 2 was stopped because of my disability. I don’t know what to do they say no matter what my money will stop if I am unable to compete the assessment process.

OP posts:
Orangeblossom78 · 24/01/2020 18:28

Also you see this

"They can’t do a home appointment in time for my money to continue"

that is nonsense they are telling you. I think they have deadlines for doing these assessments in (Atos) it is the DWP that can stop it. Not Atos, only after the assessment.

Also, that you getting PIp already, that is a good thing, because they need to show a 'change in circumstances' or improvement etc to stop it. They already know you have something significant with needs etc, if you appeal you who'll get it back. It should work out OK. They shouldn't put people through this stuff.

Orangeblossom78 · 24/01/2020 18:29

When they spoke to my MP, it was all 'when is convenient for her, would first thing in the morning for a home visit be best, next week?" kind of thing. Honestly. Before that it was 'have to go to the city centre on a Saturday'.

mumwon · 24/01/2020 18:50

for future use for anybody else: when filling in the bloody form write on the front sheet that you need someone there to speak for you because of (whatever it is) I did this on dd behalf (ASD) they didn't give her on pip assessment but THEY decided that based on the form (which I filled out & stated I did so etc) she got award. So - answer all questions on form, read form & advice, get advise from what ever charity deals with disability/condition don't be afraid to keep on writing or repeat what you have said elsewhere - sometimes things are connected. quote when examples of problems that have occurred etc & I repeat get help CAB or whatever & take your time answering questions & take copies of any assessment etc & think of anyone who has helped you whether social medical or whatever & give their address etc

Tonyd · 25/01/2020 00:54

Hi I'm dealing with a stopped esa limited capability for work case since last March I won the tribunal case in October but universal credit will not pay out or back date any money but since I emailed Teresa coffey her email pinged back a different email address to contact which I emailed Megan called the next day but I have a direct number to a head of complaints and in 1 week they are finally really looking at my what they call unusual case the number I have is 01914018981 her name Megan but whoever answers they can Help
Regards Tony

Tonyd · 25/01/2020 00:57

Megan is DWP

Henryloveseatinglego · 25/01/2020 01:08

Ask for a home assessment ..
They get paid to frustrate the process and prolong as long as possible and if you can walk stand up its unlikely you will get anything in the first round of assessments .

You will get 30days to appeal the first decision then it will go to tribunal . this is when to you get a proper assessment and the look into your medical records .
then its another 45days for a final decision .
If you fail this then the only option is court . the whole process is designed to frustrate and delay payment for asking as possible .

Elle7rose · 25/01/2020 01:37

Hi OP,

That sounds awful.

Ask your consultant or GP to write that the stress brings on your epileptic fits and that it is not worth the harm to your health for you to be put through another one. S/he can request a 'Paper-based assessment' , which may be granted given the circumstances.

You just need to back up your claim with lots of documentary evidence (e.g. hospital letters, consultant reports etc.).

Discustard · 25/01/2020 01:42

There is no point you contacting PIP. The delay is down to the assessment provider. Step 1 is follow the provider's complaints procedure. Complaints get a very (well, relatively) quick response. The contact info and guidance will be on their website, if you know the name of the company (atos or capita depending where you live), I can link it.

Complaints structure is as follows: what happened, what went wrong, what they can do to fix it.

What happened : you are supposed to be reassessed by them for your pip
What went wrong: unfortunately you have had seizures during multiple assessments meaning they have had to be concluded, this is not your fault. Not only this but your mum was told she could not answer questions about how you are following a seizure even though you couldn't possibly answer this yourself, due to your health condition, and wanted her to help you answer. This is contrary to their own guidance on companions at assessments. As a result you face a long delay in having another appointment due to their failure to rebook you a suitable (home?) appointment, meaning your fixed term PIP award will end before a decision is made about your new one, and you are stressed about being told you have to answer questions when you will struggle to do so and brought someone with you for that reason. The delay in rebooking is unacceptable and will leave you in financial hardship as a result.

What they can do to fix it: urgently review the evidence you have already provided along with the partial assessments conducted and decide whether they can now make a recommendation on your entitlement without seeing you face to face. Alternatively, fast-track another assessment, preferably at home where you will be less stressed and therefore less likely to suffer a seizure, to ensure you are not waiting an unreasonable amount of time.

Step 2 (simultaneously) take it to your MP. In this case the assessment provider are being unreasonable not rebooking you as soon as they can, however they may genuinely not have any quick appointments and that is where the MP may come in handy in escalating the matter to someone higher up who can arrange that. Your MP may however say their hands are tied because the assessment provider is not part of the DWP but a private company. This is true. However MPs are perfectly able to advocate for constituents dealing with private companies and no reason why not.

NB if your new pip award is not decided before the old one runs out, due to all of this delay, I think it should be backdated so there is no gap but am not 100% sure if that is how it works for renewals.

For general info: to get the assessment provider to see you at home, realistically you need a doctor's letter, ideally sent off with the health questionnaire / PIP form rather than later on down the line, explaining it is not safe for you to travel to assessments for whatever reason, and also to write this separately on the form itself.

Finally, the process of "getting someone to speak for you" sounds like they are actually trying to suggesting your mum should be your appointee. This is entirely different from the assessor being willing to listen to her at a medical assessment. An appointee receives your money, signs your forms, and gets your benefit letters. It is for people who, for whatever reason, can't manage their own claims. This may well suit you, but just for your info.

It is true that the assessors' guidance states that the assessment should be primarily conducted with you as the claimant, rather than a companion, but it does not mean she has to be your appointee to help you at the assessment. I've pasted the info below:

Consultations should predominantly be between the HP and the claimant. However, the companions may play an active role in helping claimants answer questions where the claimant or HP wishes them to do so. HPs should allow a companion to contribute and should record any evidence they provide. This may be particularly important where the claimant has a mental, cognitive or intellectual impairment. In such cases the claimant may not be able to give an accurate account of their health condition or impairment, through a lack of insight or unrealistic expectations of their own ability. In such cases it will be essential to get an accurate account from the companion.

1.6.54 However, the involvement of companions should be handled appropriately by the HP. It is essential that the HP’s advice considers the details given by the claimant and the companion and whether one or both are understating or overstating the needs. If the presence of a companion becomes disruptive to the consultation, the HP may ask them to leave. However, this should be avoided wherever possible.

1.6.55 HPs should use their judgement about the presence of companions during any examination. A companion should be in the room for an examination only if both the claimant and the HP agree. Companions should take no part in examinations.

1.6.56 The presence and involvement of any companion at a consultation should be recorded in the assessment report.

FoamingAtTheUterus · 25/01/2020 02:25

Contact fightback on Facebook. They're amazing and really know their stuff.

Could a health professional help ?? When my son was psychotic I contacted them asking to do a risk assessment as a home visit would have been unsafe (( he wasn't allowing people in the house at that point )) then his nurse stepped in as she was so concerned. I've no idea what strings she pulled but he avoided his face to face entirely in the end.

Lucifer666 · 25/01/2020 03:06

@newlifenewme2020 I completely sympathise I'm going through it with PIP right now. I was originally awarded it for severe depression and anxiety but I told them it may change as I was awaiting an assessment with psychiatrist. Fast forward 2 months I was diagnosed with Bipolar disorder so had to have another assessment. I provided all the medical evidence needed including a signed letter by the psychiatrist stating my diagnosis and my current mental state. I failed the assessment and my PIP was stopped as apparently I could manage my condition very well 🙄 I fought for months and had to give up.

Fast forward to last year I reapplied went to the assessment provided a sick note signed by GP as I was off work. Provided my medication and did my best to explain and I scored zero points and the assessor wrote things in the report I neve said or twisted what I said i.e I explained I don't take pain medication (i have arthritis in my feet, ankles and shoulder) as I don't want to mix them with the anti psychotics I take for bipolar disorder the assessor wrote I don't use pain relief at all so clearly not in pain. I was again turned down and effectively told I was fine scored zero points again they repeatedly stated despite what I claim I clearly can manage my condition.

I was recently diagnosed with PTSD, chronic burnout and depression along with bipolar symptons being aggravated and I called to inform them of this as I was in the process of appealing. The person I spoke to didn't add that in to the appeal so I was turned down again. Have reappealed and sent more evidence in to them as proof and I lodged a formal complaint against the assessor who wasn't even qualifed to assess my mental health.

I'd advise you to get down to Citizens Advice Bearau ASAP OP cos those PIP assessors are blatantly discriminating against people all the time they pull this kinda shit like cancelling appointments and such to make it harder for people to be awarded PIP. I've complained and basically been told its my word against the assessor. CAB should be able to help they've always been pretty good in the past when I needed advice. Good luck op x

Lunathewitchespus666 · 25/01/2020 08:51

I have just had my PIP continued for the next 3 years without a further face to face, so it can be done. A decision maker rang me at home, asked me a couple of questions; continued my care rate and awarded me standard rate mobility which I had not had in the past. I had help from the CAB to complete the form as I struggle to write, and used past ESA & PIP evidence & assessments to make the decision.

Orangeblossom78 · 25/01/2020 09:00

They continued mine for another 5 years, after me saying I would appeal. they even apologised to me.

On Fight back, a PP mentioned them, have heard mixed stuff I know they charge so be aware of that. I never used anything like that.

Orangeblossom78 · 25/01/2020 09:00

As PP above I also had the standard mobility added on too

Lunathewitchespus666 · 25/01/2020 09:11

I forgot to say good luck and I hope you get it sorted.

Lunathewitchespus666 · 25/01/2020 09:14

It takes me so long to write I get out of synch with the convo! Great news Orangeblossom78! Smile

Orangeblossom78 · 25/01/2020 09:21

Oh sorry above I meant Atos, not PIP with the MP- they have a contact at Atos.

Orangeblossom78 · 25/01/2020 09:22

Thank yes was quite an ordeal. Please people note Appeals are the way to go, even a paper appeal. and they might do like me and contact you and reinstate it.

KatieB55 · 25/01/2020 09:33

www.fightback4justice.co.uk/
Definitely contact your MP

BetsyBigNose · 25/01/2020 09:41

No advice OP (sorry), but I empathise - I'm hooked up to a drip for between 12 and 18 hours a day, so have Nurses come in twice a day to hook up and disconnect, I vomit between 5 and 10 times a day and am so weak I can only walk about 20 metres before stopping for a rest. I applied for PIP back in September and they've agreed to do the assessment at home (as my GP and Consultant have both told them I won't be able to attend an appointment outside of the house), but they still haven't given me an appointment and it's been 15 weeks!

In the meantime, we're struggling along on DH's salary and my meager UC funds, barely able to afford to pay for the kids' bus fare for school! The whole system is just crap. I'm sorry you're ill and I'm sorry they're being so uncooperative, I hope they sort themselves out sharpish!

GaaaaarlicBread · 25/01/2020 10:11

Hi , I have seizures and claim PIP too. I claimed in 2016 when my seizures increased to hundreds a week and I got denied it as they said (and I quote) - ‘you manage to go to work so you’re not that disabled’ . I didn’t appeal and regret it . Then May last year I was signed off work for 6 months and was having them every single day and claimed again and got denied it, and appealed and they came to my house to save me having to trek out (same as you, the stress), and after appealing it they gave it to me . I know you obviously do get it so that’s not the issue but what I was thinking is you could see if they can come to your house like they did me ? It helped with stress levels

PetiteMuffin · 25/01/2020 13:23

I have no experience of benefits so can’t offer any help but just sending you support because I’m gobsmacked that having seizures in front of the assessor not once but twice is not evidence enough that you need this benefit. It just beggars belief! 💐

ilovesooty · 25/01/2020 13:53

To any sensible person it would be sufficient evidence. They are basing the delay on being unable to complete the assessment.

Orangeblossom78 · 25/01/2020 13:59

Betsy you will get a backpay lump sum from the start of the claim. It can be thousands or tens of if they take ages.

Talula1993 · 25/01/2020 14:45

Do you have any other conditions?

Epilepsy within PIP criteria is usually fairly straight forward, as long as the seizures come with minimal to no warning and your safety and awareness is impaired both during and following the seizure it is just 'blanket' scored. It adds some complications If the after effects of the seizure goes on for days as that can make you eligible for higher scores or if you have reported other conditions alongside this, as say for example if you reported anxiety too they would have to question you on how this effects your ability to perform daily activities alongside the epilepsy. So if you had any information like this they probably can't just go on the information available and will have to question you further as the DWP would just reject the assessors report if everything highlighted in the pip2 form wasnt addressed. (And that would mean coming in again)

Dont direct any enquiries to the assessment centre themselves, the staff deal with all sorts of requests, abuse, complaints etc. Even your legit problem will just be added to their long list of things to ignore. It's the DWP that would have to make any special arrangements.

I'd probably advise gathering information from professionals in case they can do a paper review.

Also, there are no rules that someone can not speak on your behalf, assessors can prompt or encourage you to speak more, but theres absolutely no rule that this is a requirement.

Hawkley · 25/01/2020 15:03

Contact fightback4justice 0161 672 7444 they are benefit experts and they will do it all for you.