PIP assessment tomorrow, would love advice.

SaintB

After a few years of putting off applying for PIP due to my sheer anxiety about the whole thing -and with aid and support of my therapist- I managed to apply this year a month or two ago and tomorrow is the day of my assessment. 

I'm incredibly nervous about the whole thing, I have my mother and mentor coming with me as support, but I know my UC assessment completely ruined me when it happened and I dont think much will qwell my anxiety. Especially with how many horror stories with PIP assessments I've seen and heard from friends personally. 

That being said, I'd love to get some advice on anything I should know or do for the assessment. I have my ID's sorted out but I'm not sure if there's anything I should watch for to make sure none of my needs get missed from being brought up -i'm asking my mentor to make notes so i have evidence if i need to go to MR or further-or any good advice I'm missing in general.

Also how/when do you request a copy of your report? Do you ask at the assessment or later on?

poppy123456

I hoping that when you filled out the form you gave as much relevant information as possible. This will then mean that they won't need much extra information during the assessment. Many people mention there wasn't enough of time to tell them everything but the time to tell them this was when you filled out the form.

I can't tell you what questions they will ask exactly because i don't know anything about your conditions. I'd advise you to try not to answer anything with just a simple yes or no. Try to go into as much detail as possible. By doing this you'll hopefully avoid the assessor coming to their own conclusions.

If you kept a copy of the form you returned (you should have) then have a read of that before the assessment just to remind yourself of what you said.

In my opinion, taking notes isn't going to help if the worst happens and you need to request the MR because this isn't going to get you a PIP award.

The assessment can last anything from 20 to 120 minutes.

Once the report is written and returned to DWP you can ring PIP to request a copy. However, please be aware that they very often causes more anxiety and stress, even if the report is in your favour. Also remember that the assessment report isn't the decision. It's a recommendation only. Whilst they mostly go with it, they have been known to go against it.

Hannah_Alumni

Hello @SaintB

Welcome to the community! Good luck with your assessment. I'm glad to hear you have support going with you! In my experience, I would take a deep breath, take Poppy's advice about avoiding simple yes and no answers and plan something to do afterwards. Whether that be to treat yourself to tea and cake or pick up something you've had your eye on for a while. 

SaintB

Wanted to update to say I went to the assessment Monday and got the 'we've received your written report' text the morning after. 

It seemed to go well, my assessor was knowledgeable about my conditions, even the more obscure/niche symptoms people often overlook. I know that doesn't mean anything for what the results will ultimately be but it did make the experience a lot less traumatic along with having solid support there with me. 

Now for the hard part which is waiting to hear back, I keep overthinking everything I said and what I could have added if I'd thought about it -I was pretty thorough I think and my mother and mentor added a lot of details of my needs, but unfortunately my anxiety manifests in me overthinking any conversation I have. Important ones are just worse! 

Hannah_Alumni

Hello @SaintB

Well done for getting through your assessment! I hope you had a rest and treated yourself afterwards! I'm glad you feel it went well, still keeping everything crossed for you! 

SaintB

Hi I wanted to just update this to say my answer came back with no, only 2 points in daily living and 0s for everything else despite everything we said and I'm... well I'm devastated and confused and very stressed as you can imagine. I knew in my guts this would happen for some reason but it hurts and the thought of having to keep on fighting makes me feel sick but I... I guess I have to.

Albus_Scope

Oh @SaintB I'm so sorry they only scored you two points.  But this is something we hear all too often here I'm afraid.  But fighting, if you feel up to it, can be worth it. Please don't let this affect you too much.

Leigh14

SaintB said:

Hi I wanted to just update this to say my answer came back with no, only 2 points in daily living and 0s for everything else despite everything we said and I'm... well I'm devastated and confused and very stressed as you can imagine. I knew in my guts this would happen for some reason but it hurts and the thought of having to keep on fighting makes me feel sick but I... I guess I have to.

Hi. For my first PIP claim, I was only awarded 4 points, so I understand how disappointed you must be feeling. I went on to do a MR, and was awarded for mobility. There is not another assessment at this stage.
Wait for the decision letter, then decide if you wish to go further with it (MR). Let us know, and the lovely people at Scope can advise you on what is needed.
Take care.

chiarieds

I'm sorry your decision wasn't as you'd hoped. Just a quick word for now. Once you get your decision letter, if you decide to do a Mandatory Reconsideration (MR), please don't ring up to start one off, as it should be put in writing. Pop back on the forum, where our members would be happy to advise further about doing a MR.

SaintB

I ended up calling PIP to ask about what happened and get a copy of the report -what I received was my decision letter to be clear! Realised I didn't say this in my update yesterday my head was not in a good place- and a list of reasons/explanation. The case manager went through bits with me -it was...very extensive and it was a lot- and the quoted parts are that because she viewed me as not actually mentally ill or autistic -I am diagnosed and I sent the proof in, my doctors seconded this, I know PIP isn't' about diagnosis but this was something she cared about a lot in the report so I'm mentioning it here- she basically wrote 'she said this and gave examples, her mentor and mother gave examples, because she's not sweating right now she's not suffering any mental problems so she can do it' for every single thing. 

Similarly she asked about my lack of communication with doctors/no change in medication. I explained -and this was seconded by my mentor and mother- that because of my severe anxiety and my doctors refusal to let me set up online appointment booking you have to phone up to get an appointment which I have so much anxiety and can barely function to get out of bed on a regular basis you can imagine interferes. I was begged by my UC assessor a couple years ago to up my medication because she was worried about me and I wasn't able to stomach a doctors visit to do this.

Me being out of therapy also went against me, despite my explanation that my therapist had to quit her work for personal reasons and lack of funding for the charity meant I wasn't able to get another, I even talked extensively about how downhill this made me. I've only been out of therapy a couple of months, I was still in it when I applied and its clear to me how much I will need it for at least a few more years if not my whole life to remain even halfway functional.

This is to say nothing about my physical pain, I'm in pain all the time and she decided because my 'skeleton looked fine' I cant' have joint problems, because I'm not diagnosed as anything. I've never talked to my doctors about it for above reasons and honestly most of the time they just say 'well you're fat so lose weight' if I tried, and I'm unable to take strong pain relief so they wouldn't really be able to do much anyways. 

I know none of the above is...particularly unusual for the assessors but it still hurts, especially to have someone look at the diagnosis' I've had to fight hard for to get -and I told her about, she asked me and it seems it was a trick to prove i have a good memory, which i don't, i just remember very specific things. I was abused as a child, things like crying or showing emotion was punished by my father, he'd threaten to kill me even. So I've learnt to hide it, alongside the fact I have a very flat expression and affect as part of my autism I struggle to show how upset I really am.

So I've been accused and treated like I'm 'fine' all my life, the progress I've made was by sheer luck of a kind doctor who believed me or understood how people like me function. So hearing it again makes me wonder what I have to do to be believed, I've been suicidal for years and one of my biggest ideation thoughts is 'I'll be believed if I'm dead, finally I'll prove I'm ill enough' and for the longest time that particular one hasn't been a huge issue and others were the problem, yesterday it made it all come back. 

I spent the evening texting help lines for those thoughts -which...none of them were any good for me I'll be frank- and the crisis line later at night so I could talk to someone whilst my mum slept. (I love my mother but I cant bare the thought of her going back to the past where she would check on me whilst I slept because she was scared I'd done something to hurt myself. I'm not ready sharing it with her right now.) It was nice hearing someone be just as mad about what I'm going through, someone who could write up and refer me to actual aid with the GP, as pessimistic I am about them as frankly they've never been super great for me. 

The good news is I'm still here, but honestly? I still feel just as miserable, maybe a little clearer in the head but just as broken. 

(I know above I mentioned a phone call, its not something I can do reliably and it literally took me a year and a half of encouragement to start a PIP claim at all because of needing to phone and I had to lie down and cry for 2 hours afterwards. It's not a reliable thing for me.)

The PIP case... is it a case manager? I don't remember what his title was now but he was a higher up member from the person who originally took my call, but we did talk about things and his opinion on the matter was that because there's not much in way of doctors evidence due to above issues they decided to believe I'm fine which confuses me because I thought that was why the assessment was there. The notes stated a lot of what I gave in wasn't even considered towards my decision either. The pages of information my mother gave as a statement, my therapists statement, my statement, my symptom diary, my diagnosis letters, all of them not used. 

He did activate a MR for me because honestly I just wanted to get it out of the way, I'll still be filling a form in with my mentor and sending it out when we have the assessment copy to analyse and go over. I don't make the best choices when I'm having a breakdown as you can tell, so it was probably a really dumb decision to do that but it can't be undone anymore. 

I think he felt bad about how much I kept pausing to cry on the phone when he covered the report and the list of inaccurate statements piled up. Because he asked if I had any other benefits and I told him I was on UC assessed as LCWRA and he added the full report from that -I've never seen it, I never asked for it, at the time I was just relieved to get a good result- to my evidence list. I know the criteria for both are different so I expect this to change nothing, I don't really understand why he said it was 'actually a very good report' because I can't see it helping, maybe he just wanted to try and cheer me up. I appreciated the gesture regardless because knowing someone there wanted to help me was something good. There are people in the system who are kind and want dearly to do something for you, I'm glad they exist and its upsetting its designed to discourage that kind of behaviour. 

I know only something like 20% of MRs actually change the result you get, which is even lower than the 45% ish percent of assessments that succeed. So I have realistically no chance and have to push it further. I don't know how I'll go on when that happens, I really don't, my mentors charity hiring her loses funding in December because of EU funding ending then so I wont have anyone after that. She's the only one whose helped me with it, past charities bullied me into not applying because then 'you'll be one of those lazy people who never tries to get better'. 

Part of my Autism is I can be too trusting when someone is kind to me or they appear to be nice. At highschool girls tricked me to follow them to London and abandoned me there because I thought they were my friends. Turned out they just wanted to play a trick on the 'fat ugly kid'. A -now ex- friend used to convince me to skip class or do her coursework because that's what friends do. The assessor was kind to me, said she understood, knew how hard my experiences must have been, I feel so stupid for thinking she understood me. It upsets me even more knowing she'll be seeing many people, how many of them will she treat like me? How many will feel the way I am now. I'd like to hope in a ideal world she feels the guilt of this but some people are like this I guess. 

Wow this... response became very long. I apologise, this is one of the only spaces I can really talk about this. 

woollywonder

I'm so sorry to read of your experience and of how it is making you feel. It is horrible to feel as though you are 'not believed' but the assessors do have to work to a strict matrix when recommending scores, it's not very flexible . 

One of my closest friends was a PIP assessor a few years ago and she was very passionate when she started about helping claimants to get the award they deserve by doing the best assessments she could. She realised after a few months that if she didn't 'fit the matrix' her reports were returned for her to re work - and these were looked upon very negatively by the higher ups. She left within 2 years feeling disillusioned and broken and went on to become a very happy and fulfilled district nurse where she felt she was able to really make a positive difference.

I guess what I'm saying here, is try not to take it as a personal attack against you, because I think the majority of assessors probably begin the job with the very best of intentions.

As mother of an autistic adult, I feel very strongly that the challenges faced by many people who are autistic are the very things that can make it so difficult for them to successfully claim PIP.

I hope you don't give up - take it all the way to tribunal if you need to!

Thinking of you and sending strength

Jimm_Scope

Hey @SaintB, it isn't an easy road is it? I just got my decision letter the other day to find it saying all 0 points awarded. Including a line saying "Has no neurological condition". I have ADHD, I've been diagnosed with ADHD. It feels really frustrating and... upsetting? I definitely felt a bit of anger too. Like every step in life you're having to fight just to be recognised for who you are. And when you encounter a system that is meant to help you, the first thing it does is deny you. Says you're lying. And they're not even trained to make such a decision. 

We'll both get our MRs in, and if we have to we'll both be putting in for a tribunal. We won't let them think they can just brush us off like this, trying to deny a fundamental part of us. 

I've already sent you an email, but always feel free to reach out.

SaintB

Got the assessment report back, is pretty much what the guy on phone said -though difficult to read at points due to the typos, i know that means nothing for the validity of the report or how its taken by a decision maker, just noting that it made it a lot harder for me to understand- she wrote down what I said then just said 'she's not mentally unwell because she's acting fine to me' every time. 

There were a lot of also very weird errors, like saying my mentor was my mum, which doesn't really change anything but it made it much harder for my autistic brain to take in everything.

I've not read all of it but I saw all her recommendations and it was 'shes alert and not crying so she has no mental problems'. The things she mysteriously didn't note down were reasons I'm not on a higher medication dose -anxiety issues with doctors, phone calls, barriers to aid- why I'm not in psych help right now -funding ending, losing access to someone i trusted which caused me to spiral really badly (i don't blame my psych, i miss her a lot its really upsetting she had to leave, but i can't help how i react to things like this it is part of my health issues) so i haven't been able to refind someone- and why i wont take pain medication -sensory issues, along with allergies and interactions with my ongoing meds mean i'm not allowed anything more than paracetamol.

Apparently explaining myself thoroughly is something a mentally ill person or a person with a LD is incapable of doing, it feels like we can't win ever with these things.

She claimed I didn't consent to medical exams, she never asked to examine me as I would have been uncomfortable with it but accepted it as part of the process. Is it normal/proper to write it like that? I'd have thought alternative wording would be better because she's made it sound like I wasn't letting her check me. I'm guessing I should bring it up regardless?

Then again I spent hours with my mentor + mum calming me down for the assessment because I wanted to give her as much detailed information as I could and she used it against me so I guess being more cooperative with her wouldn't have helped me.

A crisis line contacted my GP for me but my GP hasn't contacted me and it's been almost a week, I guess I should contact them because I need evidence more than ever now but the concept makes me feel sick. My GP seems to be kinda messy I've been waiting for confirmation of my ID for digital appointment booking for a month so I could get myself into a doctor easier but they haven't. It's frustrating. 

My mentor today asked me if it was worth me fighting this but.... honestly? I'm going to feel this miserable no matter what, part of my condition is I can't stop myself focusing on things like this it consumes my whole life. I've been unable to eat and I'm up all night until I pass out and wake up at 5pm which is also causing issues for me getting aid as everything closes. 

poppy123456

The part in the report where it says “not taking any medication “ that’s just a standard copy and paste reason for not recommending any points in a descriptor. 

You don’t need to contact your GP for any medical evidence. If it’s a letter from them that you’re wanting then this isn’t the best evidence to send because a GP will very rarely know exactly how your conditions affect you. They do not see you, prepare a meal, wash/dress, make budgeting decisions etc etc. 

When requesting the MR please put that in writing, do not ring to request it. Its fine to mention a couple of obvious errors in the report but then put it to one side and forget about it. This isn’t going to get you a PIP award. 

What you should do is give a couple of real world incidents of exactly what happened the last time you attempted each descriptor that applies to you. Adding detailed information such as where you were, what exactly happened, did anyone see it and what the consequences were.

Some people find that asking someone that knows them well to write a supporting letter, your mum perhaps? Make sure she includes the descriptors that apply to you in the letter. 

If you’re outside of the 1 month timeframe then you will need to give a reason why you didn’t request it within that time. You have up to 13 months to request it. If they refuse you just proceed to Tribunal. 

Please don’t be disheartened if the MR decision doesn’t change, most of them dont. There’s more chance of success at Tribunal stage where 68% of those that either appear in person, or have a telephone/video hearing have a decision on their favour.

SaintB

They asked my GP for evidence before booking in an assessment for me, which for some reason they stated my anxiety and depression but didn't bring up my autism and other conditions I'll skip here for brevity, mentioning they hadn't seen me in over 2 years -the anxiety is that bad lol. I'm not entirely sure what evidence they would have wanted from them with that in consideration? I keep getting told my issue is evidence but it feels like the advice I see is evidence doesn't mean anything.

My mentor and mother wrote letters I sent in when I applied, we went over each descriptor and gave examples of my struggles for all that applied. Along with some points of things they noticed about me that I've never realised -like that I can't safely hold a cup, my hands shake apparently, sounds stupid that I never knew but I've just always thought spilling drinks on myself was my clumsiness. The assessor only took my mentors letter into account in fact that's the only evidence I gave in that she used other than my form.  I sent in symptom dairies, all my diagnosis reports -I know its not about diagnosis but I figured it'd help to know i was seen by doctors and diagnosed and its not all self reported- my UC confirmation of LCWRA which I admit I didn't expect to help but figured it didn't hurt any. I also had a letter from my at the time therapist confirming I was working with her for mental health support. 

I'm starting to worry that maybe I forgot to put my ref number on the top of some of them, would it be bad to resend them just to be sure? Evidence for your mental health feels incredibly hard to get because it's all based on what you tell them and if they don't want to believe you... where does it put you?

I admit there's no real evidence for my physical symptoms other than mine and my mentor/mothers testimony, I am diagnosed with asthma for example but I've never bothered doctors with my joint issues because in the past they'd always shrug and tell me that's what happens when you're fat. 

Would I be wasting my time also talking about how I struggled in school? My attendance of a 'regular' school was marked against me as signs I have no issues with leaving the house and socialising and am not autistic -which, I think many autistic people do exactly this, even ones who need carers from a young age attended my primary school for example- but I struggled through all my schooling and was miserable and developed my mental health problems in part because of the things I went through in those places. 

I know it's meant to be about how I am now but considering it was used as evidence against me... would it help to talk about that at all? I don't feel comfortable with them saying I was okay when I was miserable and still have trauma flashbacks from what happened to me as a teenager. 

Me wanting to see my GP is partially for help with this. But also I just need medical help, I do need my medication upped, my UC assessor made me promise to up the dosage when I saw her -around two years ago actually, I feel incredibly guilty that I never did go to the doctor I was just so scared- and my mental health is declining rapidly with what's happening right now.

The case lead/manager on the phone on PIP added my UC report to my evidence list for my MR, will this actually provide any benefit? I don't want to feel like it's helping if the reality is it wont. 

I can't help but obsess over this, no attempt to distract myself is actually doing any good and that worries me because I know MRs can take a bit and appeals afterwards even longer. 

poppy123456

I think you're looking too much at what the decision letter and assessment report says. You do not need to focus on any of those and i can't stress that enough. If it gets to Tribunal (likely) then they already know that alot of reports are flawed and they don't need to be reminded of that.

Whether you should mention school will depend on how long it's been since you left. You don't need to tell them your life story, less is often more.

You said you gave examples when you filled out the form but were they real life examples? incidents that have happened when you attempted the descriptors? Telling them you can't do ABC because of XYZ isn't helpful.

I'm going to advise you to ignore that they said "you were ok" that's just another copy and paste reason not to award points.

You said you have ASD, did you send the assessment report as evidence (assuming you have one)? I have a lot of knowledge and experience of this as i live with my daughter who has ASD. When she had her first review in 2019 i sent her assessment report as evidence. This report goes into a huge amount of detail and a lot mentions some of the PIP descriptors that she struggles with and she needs support/assisstance with. I hightlighted the most important parts because i didn't want to take any chances that they wouldn't sit and read the whole report. There's a lot of pages to read but i couldn't just send parts of the report because it would have looked like i was trying to hide something, which i wasn't.

I also sent an assessment report for when she was diagnosed with a learning disability, which also goes into a considerable amount of relevant detail. Those reports were not sent when i first claimed PIP for her because she didn't have a diagnosis of either conditions at that time. Though she was successfully awarded without any issues. They did help with the review back in 2019 because she had a paper based assessment. Same for her review in 2021 but i didn't send those reports for that. 

Whether the WCA report will help will depend on what information there is in it. PIP and LCWRA are different benefits. There's a small overlap with some of the descriptors but mostly they are different. Claiming one, doesn't automatically entitle you to the other. I'm not saying you're not entitled to PIP, so please don't think that.

When you sent the evidence to support your claim you should have included your name and NI number on everything (not a ref number, which doesn't exist anyway) There's no harm in resending them and if they're long reports i'd advise you to highlight, with a highlighter pen the most important parts.

They very rarely contact anyone for any evidence. If they contact a GP they are usually sent a form to fill in and return but in my opinion, it's rather pointless.

Sometimes MR decisions can be made in a few weeks but we do say allow up to 12. Tribunals a lot longer and potentially 8+ months.

SaintB

Its been around 5-6 years since I left university I believe. So quite a while and I'd say I've really gone downhill since and even then I had a hard time.

I've looked at my form I sent in, my mentor filled it in for me. There's no real life examples in there as far as I can see -as in 'this happened last time' or 'last week' or 'on one occasion'- they're all generalisations of an average day for me. I know there were real life examples in the mentor and parent letter, probably not as many as there should have been. Maybe that was a large part of the problem, well, probably. 

I was sent the full report for my ASD diagnosis, it was around..... 8ish years ago now I think. I'm not sure if I still have it, my memory is bad and I'll be honest past me didn't' really consider the need for these things at the time >_< . I do still have the short 'hey Saint is diagnosed with ASD' letter they also sent my doctor at the time which I did photocopy in just because I worried they'd miss it out otherwise. I hope I can ask for a copy somehow, not sure if my GP would have it though.

My letters for PIP call your NI number your reference number so I just used it as I forgot the term NI so apologies for that. Luckily I kept a copy of everything i sent in so its not any extra effort. One good habit gained from things going missing in the post at least. 

I know nothing can be done about the waiting times but I'm not looking forward to how much it's going to ruin my health. 

Also I'd like to thank you for your patience and care responding to me cause I know I'm writing a lot here.

poppy123456

You're welcome, always happy to help anyone when i can. I'm not a fan of writing about a "typical day" or sending in a diary because for me, it doesn't give a true picture. Some people do send in a diary though but personally for me i prefer real world examples. Doing this has given me 3 PIP paper based assessments, one for myself and 2 for my daughter.

Your GP may have a copy of the ASD assessment report if you told them they could share the information with them. If you told them no then there's less chance of them having a copy.

Letters about a diagnosis aren't the best evidence to send because a diagnosis isn't often in question.

The whole process is a very stressful time and even more so if you need to challenge the decision.

If you need further help or advice while going through the process please post back here and i'm sure someone will advise you further.

lainad

I have a question about MR. Is it better to refute what the assessor has said and explain why or to just ignore the report entirely and give examples of how the descriptors apply to you? Or both? My report says I work a full-time job so I don't have any issues with social communication, but she didn't include any of the evidence about reasonable adjustments (major ones, like not having to go to the office!!) that make it possible for me to have a job at all. Until I was formally diagnosed and able to ask for adjustments, I was unable to hold down a job. Should I write this? I'm so confused. 

poppy123456

Please do not focus wholly on the report because that isn’t going to get you a PIP award. It’s fine to mention a couple of contradictions/errors but then move on and put it to one side and forget about it. 

For your reasonable adjustments then I would mention those in the MR letter. Don’t forget those all important real world examples. 

SaintB

My GP sent over a copy of my report this morning nice and easy which is lovely as I now also have a digital backup. A lot of it does cover issues I brought up in my form -not everything as time has of course passed since, but a vast majority of it- so hopefully that does me some good.

I also have a copy of my WCA coming in the post so I can look over it and see if its relevant. Post be me has started to not be delayed anymore so fingers crossed it's quick.