Can't access PIP

[TotorosBigToe]

Hi...

Not sure whether to laugh or cry, so thought I'd post here as I have noone to talk to IRL.

So myself and my teenager daughter are both autistic and I've been putting off applying for support, because I really struggle with phone calls due to auditory processing issues and anxiety of not knowing whose turn it is to speak. I often go non-verbal. That, the stuff in the news and the fact I know it can be a bit of a minefield and I constantly doubt the support we both actually need.

Anyway, today, I decided to get the ball rolling and made the calls to DWP via the Relay service.

I rang about applying for DLA for my daughter. Really helpful Relay assistant and lovely man from the DWP helped me and the form is in the post. Was so pleased that it was so accessible and felt silly I hadn't done this sooner.

Then I rang PIP.

Over an hour was spent, trying to get things sorted. The Relay people were amazing, but the PIP agent kept talking to fast and getting angry when I would answer questions, "Yes, with support" to questions like, "Can you read and respond to post?".

Apparently I could only answer yes or no.

They also wouldn't accept that I struggle to communicate verbally over the phone and became quite frustrated about this.

Anyway, I persevered and got to the final question and the PIP agent hung up! The Relay person kindly tried to reconnect, but the office was closed at that point.

I thanked the Relay staff for their help and apologised for wasting their time. They said not at all and that they were sorry the call was ended prematurely.

I know logically, I should try again on Monday, but I just want to cry.

I realise to the PIP agent, they work a 9-5 and I'm just another caller (who they were clearly annoyed with), but for me, it's taken me years to work up the courage to make that call, get that far and have nothing to show for it.

I know there is nothing they can do...I just wanted to throw it out there before I rock back and forth in a corner and cry.

They really don't make it accessible, do they? :(

I am afraid given the changes to new applicants, it’s highly unlikely you’d get it anyway

I think you might be right.

What a load of crap @Bepatientandiwillreturn - this isn’t until claims made AFTER November 2026!!!!

In any case… if the OP struggles that much with a phone call - it’s highly likely she requires social support (4 points) to be able to engage with people face to face.

Hi, I used these forms to fill my renewal form. They can be used for the 1st application as well. One is geared towards those with neurodiversity. I think people need to use them to frame to answer their answers. I have autism and have been awarded PIP again. It is one of my conditions. Good luck

Not everyone knows guides exist to help write these forms. I found the below guides helpful and wanted to share the links as I have no use it for it and it may help people with their forms and make it less overwhelming the process. It is the 1st guide that I used the most and the rest was for checking really. I tried to not overwhelm myself with information.

https://www.mentalhealthandmoneyadvice.org/en/welfare-benefits/pip-mental-health-guide/help-with-your-pip-claim/how-to-fill-in-the-pip-form/

https://www.carersuk.org/media/3yingpxa/personal-independence-paymentapril-2023-24.pdf#:~:text=2023/24%20If%20you%20are%20looking%20after%20someone%20who%20has%20a

https://www.leicester.gov.uk/media/178164/personal-independence-payments.pdf

https://www.actionforme.org.uk/uploads/pdfs/PIP-overview-Sep-2022.pdf

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=www.rightsnet.org.uk/%3FACT%3D39%26fid%3D2%26aid%3D1147sxrikSfPXVV9bBOQkpeH%26board_<a class="break-all" href="https://www.google.com/url?opi=89978449&rct=j&sa=t&source=web&url=https%3A%2F%2Fwww.rightsnet.org.uk%2F%3FACT%3D39%26fid%3D2%26aid%3D1147<u>sxrikSfPXVV9bBOQkpeH%26board</u>id%3D1&usg=AOvVaw0fHeAq8HuaFi<u>4hPHOJlGy&ved=2ahUKEwjD2snNtuyIAxWpWEEAHbZODz0QFnoECB4QAQ" rel="nofollow" target="blank">id%3D1&ved=2ahUKEwjD2snNtuyIAxWpWEEAHbZODz0QFnoECB4QAQ&usg=AOvVaw0fHeAq8HuaFi4hPHOJlGy

https://www.familiesinfocusessex.org.uk/wp-content/uploads/2023/01/PIP-helpful-phrases.pdf

@bidon I do need support with this. I pretty much only ever go to my best friend's house, because I know the "rules", but can't have her over to my house, because I wouldn't know how to host. Pretty much rely on her to go to new places, as I get overwhelmed so easily.

@Justmerach Thank you. This is really helpful. Not sure if I'm brave enough to try ringing for a form again though. I know it's silly, but to have gotten to the last question, just for them to hang up has really knocked my confidence.

Just wanted to update and say that after a lot of encouragement from a family member, I rang again using the Relay service. This time had a lovely PIP agent who was patient and didn't make me feel like a total inconvenience for using Relay. The form's in the post. Not sure if I will be entitled to anything, but I'm trying to accept any help that is available, as things are very hard in my day to day life.

That's great! I am also ND and applied via post, but I missed a call from them, and my heart sank because of how hard I find phone calls.

However, after a few weeks gearing up to it, today I managed to call them back (used relay as well!). Good luck to both of us!

It's a nightmare isn't it. I know exactly how you feel, the dread and anxiety of having to talk to them.
Myself and son both have autism and I am dreading having to do this.

Just thought I'd update.

The initial assessment was horrendous and inaccessbile, as I had a lot of verbal shutdowns over the phone. The assessor clearly had no knowledge or understanding of autism, but accepted the physical disabilities that I was also applying for. (Dyspraxia, EDS, bowel issues etc)

The report was full of inaccuracies and I was originally awarded standard mobility only.

I completed a mandatory reconsideration, which frankly made me ill. The DWP, knowing that I was having surgery on a certain date rang me an hour after the operation. I could have cried, but today was awarded standard daily living and enhanced mobility.

I'm relieved that I don't have to take this to tribunal, but saddened that the whole process is inaccessible to those who would be entitled to support.

Congrats about your outcome op. I also struggle with phone calls so much, it's so ironic that the services for helping disabled people are not even accomodating to disabled people!

I am still waiting on my assesment, and all the people saying their reports were full on inaccuracies are freaking me out. Is there a way to have proof of your answers, are we allowed to record the call or something?