PIP Not Renewed

[Rockhopper81]

Not sure if someone can offer any advice or just support whilst I try and sort this.

I was originally awarded PIP - standard rate for daily living and mobility components - in January 2018. I am autistic, and have depression and anxiety as well. I was told at the assessment that they recommended review would be at least 5 years because 'autism doesn't go away'.

I had a letter last year saying the award was extended by a year because of Covid backlogs, so I had my review (via telephone) at the beginning of the month.

I've received a letter today saying my award has been ended from February 20th, as my needs have changed (they haven't).

I'm in a bit of a state right now - I get disability premium on my ESA (single person) because I was awarded PIP, so my ESA will now go down too. To say this has added to my difficulties would be an understatement.

I know I need to ask for a mandatory reconsideration first. I don't have 'medical professional letters' to add in - adult support for ASD isn't great at best, plus I would be considered 'high functioning' (hate that term), so wouldn't have a worker anyway.

I'm petrified it's all going to go wrong and I'm going to end up completely in the shite here. The assessor was pleasant enough, but she had a thick overseas accent, so I struggled to understand her at times (although the letter says I was fine with understanding). It also states I didn't need support from a third party, but my mum was there and the call was on speakerphone - which I said - and my mum was helping, but trying not to be heard (she didn't want to appear rude).

I'm hoping someone can offer some light at the end of the tunnel that I can get this sorted - I'm panicking at the moment.

@Rockhopper81 hi op, have you heard anything yet? I had mine taken because " mental health isn't a disability that can be seen" I wrote a massive letter myself to say basically hidden disability are the same! They gave me back my money and put it higher as the assessor lied and said I can take a dog out for a walk when I don't even have a dog I told them to listen to the call. Absolutely horrible people they lied about so much I never even said luckily I recorded the call too

I've had something similar OP, they said things like I didn't have a formal diagnosis and was not in the care of the MH team, but I did have a diagnosis and am on long term meds...anyway it was overturned before the tribunal but after the appeal stage. They even said sorry (DWP)

I'm due another review soon and expecting the same again as not getting any support from anywhere and been told the psychiatrist who diagnosed me has left and to see the GP about my antipsychotics...

@Orangesandlemons77 I'm the same I've just had a message this morning to say I'm being reviewed so I'm looking to probably get it taken again and I don't know if they will re consider again for the second time, but this time a person told me from dwp to just put on ever comment " no change" and they won't do anything further with taking it

I hope that's the case. Fingers crossed. It's so stressful isn't it.

No, not yet. Apparently they expect to look at my case again (following my submission of the letter requesting mandatory reconsideration) by May 4th, but then I will have to wait for the letter with their decision - the last two letters I've received from the DWP were dated at least 14 days earlier than when I received them. 🤦🏻‍♀️

There are all sorts of inconsistencies, aren't there, with what you actually say and what they report back? Mine said about not needing support - my mum was there the whole time, I made that very clear, I even asked her to clarify a few things, but because she didn't talk over me, the assessor said I didn't need her support; report said I was capable of driving a manual car, which is true, but that has no bearing on my ability to plan and follow a journey, I've never claimed to have a physical limitation; report said I was capable of planning and cooking a meal, but actually I have difficulty with that because of the different components, and I just wouldn't have anything other than snacks if left to my own devices...all clearly discussed during the assessment, all conveniently forgotten in the report...

I pointed out there isn't a lot of support for autistic adults, so my medication is dealt with by the GP and I don't have any 'specialists' - goes down as not needing support, and therefore no supporting evidence. Honestly, it's exhausting...they're called hidden disabilities for a reason!

I'm so sorry to hear about this @Rockhopper81 I hope it's sorted soon, and you get your award back (and get it all backdated!)

Are you on ESA?

Yes, I'm in the support group for ESA, but that has also been affected - I used to get the severe disability premium as I also received PIP, but now I don't get that, so ESA has dropped too. 😕

When they did similar to me last time, I appealed, on paper and said there had not been any change in circumstances since the previous time. As I understand it they have to show one to change it. Anyway it was successful. I would just go through the appeal process, best of luck

Oh no, I'm so sorry. I didn't think PIP and ESA were linked. I wonder why your PIP being stopped affected your ESA?

Hi all,

Just to update - my mandatory reconsideration was unsuccessful, just received the letter. 😞

I will now start the appeal process. I am so thankful I have supportive parents in all this, because the financial hit is massive, and now it's going to go on whoever knows how many months longer...😖

I'm not surprised - especially given all the stuff in the media about reducing the number of people of PIP and disabled peoples' access to benefits in general - but I'm still disappointed, it would've been nice if something was easy and straightforward for once.

Sorry to read this.
Yes I think sadly you are right that people like you with anxiety and depression will start to bear the brunt of the proposed changes even though they haven't come into affect yet. Good luck with the appeal.

@Babyroobs

Thank you, and I agree - I suspect this is part of a 'soft launch' of the new proposals.

Although maybe I should contact the NAS - clearly my autism (and its associated difficulties) have been cured since my last award! <sarcasm, in case anybody was unsure>

Hopefully we will have a change of Government soon, who will make the process for claiming help such as PIP, a less gruelling process.

@Rockhopper81 So sorry to hear that news. Let's hope the tribunal appeal happens soon and they see sense and reinstate your award. Have got the support of the local Community Mental Health team behind you? I hadn't realised but if you are under their care then they will supply you with a copy of your care plan and a supporting letter for PIP. If you aren't with them, are you with any other mental health organisations that could do you a letter of support?

@rockhopper my son had his PIP removed. He is autistic. He is apparently able to care for himself and in no need of PIP because he can use a microwave and can use google maps. This means he is capable of independent living and travel. The fact that he can't shop for food for the microwave, use public transport etc completely passed them by. He doesn't have the spoons for any more hassle so he's let it drop and I'm helping him where I can despite being on UC myself. He wants to reapply but it is a huge uphill struggle and the wait for an appointment at a local advice centre is 2 - 3 months.

I'm nervous about this. Dd also is asd and needs a lot of support from me though she is of high intelligence and can work part time if the environment is right. She gets Pip now but I can see them trying to remove it. I'm
Hoping for a new govt as well for many reasons.

I'm not under the Community Mental Health team at present, and there isn't a lot of support for autistic adults in general, but I'm trying to think of who could write a letter supporting my appeal.

At the risk of sounding ridiculous, would it be appropriate to ask my parents to write something detailing what they do to help me? They provide a lot of support, indeed I wouldn't cope at all without it, so they're pretty well placed to say how my needs affect me...but they may be seen as biased?

The other thing I have to decide is whether to attend the tribunal or not - that sort of thing is a major, major issue for me, and I would certainly need my mum there, and would quite probably still have great difficulty with it (new environment, new people, having to talk to said people, having to respond to questions, lack of comprehension of questions as under extreme stress etc. - and that's just the ASD bits, without considering the extra anxiety I would have about trying to 'defend' myself to a tribunal panel); but searching online suggests going if at all possible, as it's helpful...do I say I'll go and risk a complete meltdown (and a recovery time of who-knows-how-many days - that's a given whatever happens), or not go and risk my appeal not being taken seriously?

It's all totally shit. That's all I can think of to say. Basically because if I say much more, I fear I may swing between crying and raging forever. 😕

@Rockhopper81 That's not ridiculous, it's a fantastic idea. Get your parents, and anyone else who knows you, to write a detailed letter stating exactly how your condition affects you and in what ways they have to help you. The more evidence you can gather the better. I am a carer for my dh who has mental health issues and I always include a letter, written by myself, detailing how my dh's illness affects him and what he cannot do for himself anymore etc. Get them to write as much information as possible, it won't be seen as biased because they are related to you, if anything, they actively encourage this as there is a section for it at the end of the PIP review form, if I remember correctly. Also, I think it's a good idea for you to attend the tribunal in person but to definately take your mum/dad with you for support. Not only for this reason but to help answer any questions if you falter or go to pieces. It also shows the panel that you need someone accompanying you to be able to cope with such situations. I must stress, I've never been to a tribunal but I have read lots of information about them and from what I've read, I think the tribunal panel do overturn a lot of negative decisions. Try to stay strong!

i think you would also need up to date evidence of your difficulties from health care professionals in addition to letters of support from family though

Thank you, I shall ask them to write a letter detailing all the support they give me. I think I'll ask the other person who provides a lot of support (friend, practically a sister to be honest) if she will write something too.

What gets me about the whole process of applying for disability benefits - and this is what people who judge those on them will never understand - is that it is all about detailing how crap and incompetent you are, which is terrible for the already low self-esteem and confidence a lot of disabled people already have.

It'll get there - or it won't, we'll see - but all I can do at the moment is work on the next 'bit' (submitting the appeal paperwork). Doesn't stop it all feeling quite shite, but it in true British fashion, "it is what it is" I suppose.

I'm grateful for the people here though, sometimes you just need to bounce ideas off people and get other sets of ideas/opinions. 🙂

Just to update this thread - I finally had my tribunal and was successful, standard rate daily living and mobility, like I had before, awarded for 5 years.

It's been a long 9 months, but got there in the end. It's been a really stressful process, and I honestly think there's not a lot of consideration given to how it all affects people applying, but it fortunately 'went my way' in the end.

Thanks again for all the support on this thread.

Great news.

Fantastic news, so glad you got it sorted x

Thanks for updating OP. Your experience will give hope to others going through the same thing.

Delighted to hear this OP x