21 Yr old DD's PIP has been stopped. Desperate for advice

[ForLessThanALatte]

Hoping if I post here lots of people will see it. DD is autistic, has sensory processing disorder, history of suicide attempts and self harm. She is at uni and on her 3rd attempt at 3rd uni. She tried to overdose in her 1st year, woke up after taking pills and really surprised to be alive. She has very severe anxiety and cuts her arms when distressed. Last serious attempt at cutting was a year ago; she ended up getting stiched up in the hospital at 3 am. She never got DLA as CAMHS were useless and didn't diagnose her till very late. We immediately applied for PIP after she got her letter saying she is autistic and initially she got low rate mobility and I queried this and she then got high rate care. The letter was totally crazy - said she says she struggles to cook for herself when she shuts down but 'the telephone assessment showed mo evidence of cognitive impairment'??? Nobody said she had a cognitive impairment she has autism and anxiety and depression. Letter says she showed "adequate memory" and that she "coped well with the assessment and did not sound anxious" - she went mute for 3 days after the assessment cos it made her so distressed. It's like they haven't heard of masking. It says she is not getting any specialist mental health support - she got referred for therapy through the student union. It says she is not taking any medication. This is true but she was on prozac at 14/15, sertraline at 16/17 and quetiapine at 16 also. She hated how these made her feel, bad side effects etc. It is just awful. The letter came today and now it is the bank holiday weekend. Tried calling them today the line would just ring then cut off. She's going to be sick with worry all weekend. It's like the assessor has never heard of masking. She goes for days without eating as executive function is so poor and her mood gets so low but they say she can cut vegetables so that means.. I don't even know. Has anybody got any advice please help x

It's exactly same issues in ehcps education health care plan, legal document for schools to lay out what support a child is entitled to. Council will reject them and there is clear need and rely on parents not fighting. Everything about disabilities is a fight! Infuriating. Just because any type of support is rejected it means nothing. It's a way of hoping there is no fight! So less money. Doesn't mean its not needed. And the more people belive the majority or people claiming is trying to cheat the system, ite harder.

I don't think you can lump all assessors together, there are good and bad. I have sat in on many PIP assessments pre covid when they did assessments in people's home. With the exception of one nasty piece of work who made a woman with spinal fractures show how far she could bend ( I pleaded with the claimant not do try to do as asked as could see it would cause her pain ), all of the assessors have been kind and compassionate and patient and most have got the correct award . One man was turned down completely but he did not meet the criteria at all. On the whole the ones I have sat in on have had fair awards. Whether this makes a difference when they see they have someone from a charity watching and advocating I don't know ! All the phone ones I've sat with people for recently have been awarded also. We do get a lot of people coming to our charity asking for help when they've already done the form themselves and been turned down, or on their second/ third attempt. I think it does help having experienced people help with the form filling and gathering relevant evidence. I do appreciate a lot of people have bad experience.

Yes, I was asked to do something physically I should not have been asked to do, as it could have made my repair work break down. Hard enough stopping myself doing things that I shouldn't, without being told to by someone in authority.

Why the hell they couldn't trust the gp and hospital records of my surgery and treatment is beyond me, though I guess from the post upthread about assessors deciding not to bother reading the paperwork, it surprises me less. It's the same as lots of medical/social care professionals who decide not to bother reading reports as they like to "make their own minds up" 🙄

Yes I really feel they need to change the system and use medical evidence alone for some people.

I'm really sorry, @Jimjamjaroo that's awful what happened to you!!

I think this week I will mostly be spending my time getting all the paperwork for DD regarding her MH, chronic pain, the ASD itself etc. lined up and then this can be used as evidence. From looking at the criteria, and knowing how what she actually said during the assessment, because I was there, she gets more points than the assessor gave her. I'm so so angry at how her words have been twisted

To the poster who said that assessors have full training in all conditions I am afraid that isn't the case.

The assessor who dealt with DDs PIP claim had never heard of her condition and I had to explain it to her. She also clearly had not read the papers in any detail as she asked if DD would be doing any GCSEs. The paperwork clearly showed that DD cannot tell the time, struggles to understand numbers and has no idea of their value and cannot understand anything other than simple one step instructions and even then may need things explained to her several times.

Luckily I am DDs appointee but I couldn't believe that the assessor hadn't even bothered to google her condition.

I'm going by what someone who worked as an assessor told me but yes I guess they can't have training on absolutely every rare condition but they have training on the most common ones and types of disability eg learning disabilities, autism etc, psychiatric conditions, rather than just what their specialist might be.

"A little knowledge is dangerous" springs to mind!

OP I really hope you manage to support your dd with diary keeping etc and can get the evidence together that she needs. It's hard work and relentless but unfortunately, as with most things like this, the more you show you'll fight everything, IME the sooner they will back down and do what they should.

I don’t know if this has already been mentioned but there are disability advocacy organisations who can help with appeals. Trained volunteers who go over the wording of the forms with you and make sure you have the best possible chance of success. I had one and she accompanied me to tribunals, both of which I won. Your daughter is lucky to have you in her corner. Wishing you the best of luck :)

It depends on your area.

Yeah it's absolute shite they have trained in all medical conditions. I've been to GPs who've had to Google my sons conditions....which they have admitted doing. And his aren't overly rare.

Plus a lot of people have co-morbid conditions which seem to frazzle the system.

I've been involved with an assessment where the assessor had no access to the form or medical evidence as they had been "mislaid" and was wanting to do the interview with no background knowledge. We declined.
Then it was up to us to resend in everything again.
But someone not as savy to their ways could have gone along with that assessment and more than likely failed

I have heard of that happening to someone else, interesting how they manage to 'lose' things. They (DWP) lost my appeals notice from the tribunals service as well.

Would it be worth putting in some information about the conditions or do they not like that? We did that at the appeals stage, not sure how much difference it made.

@Orangesandlemons77 they seem not to like it.
BUT in interview assessment be prepared to be very vocally clear on what your or the person you are accompanying medical conditions are.
And ask clearly does the assessor have a knowledge of them.

I tend to put a covering note in explaining the conditions and the symptoms or difficulties these cause with the form.

And then as long as it isn't "lost" the assessor should have all the details you want to give them.

The onus is on YOU to tell them - and have medical evidence to back you up.

That evidence won't say that x can't do points 1 - 12 on the form but from my experience you need to have some sort of medical or social intervention to gain the points.
Which is why it is definitely not a benefit people can lie their way into receiving

I spoke to Contact A Family today about the appeal and they said that they have heard that it is better to put the request for a mandatory reconsideration in writing rather than over the phone. Not sure what the rationale behind this is. But just in case anyone else reading this is needing to appeal x

Yeah I'd say always go for "in writing" over phone calls - just for the paper trail.

Definitely put in writing your points, don't rely on someone on the end of a phone line to do it.
You need to do a proper MR addressing each descriptor and where you thought the points should have been scored and weren't.
Then provide additional relevant medical evidence to back this up.