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Pip nightmare

(86 Posts)
newlifenewme2020 Fri 24-Jan-20 07:57:30

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.

newlifenewme2020 Fri 24-Jan-20 07:58:01

Anyone got any advice.

AdachiOljulo Fri 24-Jan-20 08:11:38

I have no experience in this area but that situation is just ridiculous. I would suggest you write to your mp as they sometimes have a bit of influence. it might be that with their help the process that normally takes months can be accelerated?

Tomselleckhaskindeyes Fri 24-Jan-20 08:15:33

I think you need to make a an official complaint. You can see this on the website.

What a nightmare situation. Unfortunately very common with assessments. Have a look at Benefits and Works website they have lots of advice about PIP assessments.

OneInEight Fri 24-Jan-20 08:34:54

This is ridiculous. ds2 was awarded PIP without an interview due to anxiety but with lots of documentary evidence so they will under certain circumstances not insist on an interview. Can you get your consultant / and or GP to write a letter stating that it would be detrimental to your health to have to have another interview.

newlifenewme2020 Fri 24-Jan-20 08:37:21

Sorry I didn’t mean to activate voting.
The assessor the second tune wanted to go ahead but said I had to answer the questions without help from my mum.
My mum said how is she meant o do that when she had no memory of even being epileptic.
I have a GPS letter, 2 consultants, half an assessment from the first time, a detailed filled in form. They have seen me have the seizures first hand, lost my memory and wet myself.
My mum said could a decision be made based on this evidence so far but they said no they need more evidence!!!!
How more do they bloody need

Orangeblossom78 Fri 24-Jan-20 08:49:55

I clam PIP and have been through it before.

First a positive- I know they have changed the rules for epilepsy / seizures so it is easier to claim for those condition. I think this is about risk. i will try and find a link

Secondly, there is a thing where they can stop the claim for not attending. However I think in your case they should assess on paper or at least a home visit.

What I would do (and what helped me) was contacting my MP, they have a contact at PIP, this helped me a lot, all of a sudden it was 'of course we will assess at home, at a time convenient to her' after it being No, need to come in to a city etc, previously.

They can be a nightmare and the MP helped me a lot. I just emailed them and explained.

Orangeblossom78 Fri 24-Jan-20 08:52:09

Also, try not to worry too much about the assessment. Even if they write a lot of rubbish, because you have the evidence there, you should get it. Just keep going, mine was granted, first on appeal, second assessment they messed up and wrote rubbish, when i took it to appeal they called me and apologised and reinstated it!

They knew their report didn't accurately match any of the other stuff. Anyway kind thoughts and keep going.

Orangeblossom78 Fri 24-Jan-20 08:53:28

Here are the changes you need to know about for epilepsy

Wickedwoo Fri 24-Jan-20 08:56:54

My FIL has dementia and was recently changed from disability living allowance to pip. He hasn't left the house for several years he's terrified to go out and i knew i would never manage to get him to appointment which i explained on forms. They rang me as i am his carer and they went through everything on the phone and in the end no appointment was necessary they didn't expect me to try and get him out and they said home appointment wasn't needed. Maybe try and contact them ans just explain how the stress of the situation is bringing on seizures which is making attending an appointment very difficult.

Good luck OP

cochineal7 Fri 24-Jan-20 09:04:32

Who on earth voted YABU? Is that you, IDS?

Notwiththeseknees Fri 24-Jan-20 09:08:13

Please write to your MP and explain it is urgent. You write very well and very clearly, so a bit of pressure from him/her should get this sorted for you. Must be awful for you thanks

MaxNormal Fri 24-Jan-20 09:14:56

@cochineal7 I was just wondering the very same thing!

TwoPointFourKidsAndADog Fri 24-Jan-20 09:26:08

Inform them that twice now you have had a seizure in front of them which has caused the assessment to stop tell them every time you have a seizure it is detrimental to your health. Therefore the stress of going for a third appointment and having a likely seizure again will be of further detriment to your health and negligence on their part.
Insist on a home visit. They cannot refuse you this if it is going to make you seriously ill, which it clearly does.

You should be able to find online their guidelines for assessing clients? It used to be widely available and it might be worth having a quick run through to check what they say under the eligibility for home visits. Quoting them on their own policies is quite satisfying!
It's an absolutely awful system to get caught in to like this and I'm really sorry you're going through that. I am pretty certain you will have no problem winning it but the methods of actually getting there has been painful enough so far and I can't believe they are being so awful about it. However once you begin to question the damage it will cause you to your health to continue to have these decisions made like this, then you may find they finally agree to behave themselves.
Have you tried to Citizens advice? I know there is a disability support group that you can pay £90 for a couple of sessions to go through the problem with PIP, they may well take up the case on your behalf.

In my case, I made an appointment with my local MP. Within three days I was in the office explaining everything and left with a very good letter that I could send to the DWP.

Mrsjayy Fri 24-Jan-20 09:40:11

Go to CAB. Ask to. Speak to somebody ASAP. Ask for your assessment to be done at home they can do this and having a rep to speak on your behalf doesn't take months to organise they are talking rubbish and trying to trip you up your mum can be your representative. It is a total pain and extremely stressful having them come to your home environment might put you at ease.

cuckooken Fri 24-Jan-20 09:42:53

Contact your local council and ask for the welfare rights department. They can help.

Orangeblossom78 Fri 24-Jan-20 09:51:50

I read about a lady with the same kind of thing, they said she didn't attend and she had to appeal that decision, it resulted in a sharp rebuttal to the DWP telling them to rearrange at the accommodation of the person involved, so in case they do something like that you can appeal that decision.

But of course that adds to the whole time frame etc so if possible best to avoid that if possible. They can be so annoyingly unhelpful at times, the MP really helped me with this so hope yours can help too.

Orangeblossom78 Fri 24-Jan-20 09:53:15

The way my MP told then was that it puts your health at risk going somewhere and therefore need it at home. This could be demonstrated by e.g. you having more seizures caused by the stress of it for example.

So then they have to accommodate you more.

Hont1986 Fri 24-Jan-20 10:25:36

Your mother does NOT need to become an appointee or registered representative or whatever else they want her to do. It is perfectly acceptable, and quite common, for a claimant to bring a friend/family member/carer to an assessment to speak for/with them. If the assessor is refusing to accept that, make a complaint to the company running your assessment (either Capita or Atos depending on your area).

hoochymamgu Fri 24-Jan-20 10:42:29

I echo what people have said about contacting your MP.
Also, get a home appointment. Far better.

Orangeblossom78 Fri 24-Jan-20 10:45:20

I can't believe how they changed with the MP (grr) shouldn't be that way but it did help anyway.

Also for the OP or anyone else with PIP, this site is really good, for the changes with PIP and latest decisions etc, it is really for advisors

Basecamp65 Fri 24-Jan-20 10:52:53

I would ring DWP and ask to speak to a manager - stress that they need to help you find a solution to this as the current situation in untenable.

Unfortunately when you ring DWP you often get given the wrong advice and information and you have to stand your ground before they finally give you the correct info.

Try your local CAB but the quality of the information they give out is variable. Try a national helpline maybe run by a charity connected to your condition or a national Facebook group. There is an excellent Facebook group for Universal Credit and imagine there is one for PIP claimants. These are the people who are most likely to give you the correct information and key phrases that you need to say.

Its a disgrace that I have to say this but you cannot trust that any government department is giving you the correct information - or rather is giving you ALL the correct information.

HardAsSnails Fri 24-Jan-20 11:00:04

I think you have good grounds for requesting a paper based assessment (I don't know how you request it as my son was granted this automatically).

Orangeblossom78 Fri 24-Jan-20 18:24:07

If the GP can right a letter saying going for these assessments is making your condition worse and putting you at risk (and seizures can be risky especially in a new unknown place I imagine) that might help.

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