I carry out PIP assessments - AMA

[PIPnamechanged]

The disclaimer:

I changed my name for this.

I can’t tell you why your claim was declined, or if you’ll be accepted with a particular condition.

I can’t comment on individual claims or look you up on the system on Monday.

I won’t bother with any “how do you sleep at night?” comments as they’re just inflammatory.

I’ve done the job for around 8 years, so covered the job in pre and post-pandemic times. Work full time, 9-5 and I’m a nurse by profession.

My part of the job is the actual consultation.

Ask away!

Just came here to say thanks.

After my phone consultation I was awarded more pip than I expected - it was very hard talking through everything and the nurse made me realise I'd been putting a brave face on a lot of categories.

It must be a hard job but we need you!

I think a lot of assessments are literally luck of the draw in some respects.

For example, me and my sibling have both been in receipt of PIP for many years for different conditions. Mines is mental health, their’s was brain cancer.

I got my initial award first try, never really had any problems. Tbf, I was really quite ill when I got awarded it. it was reviewed in 2021 and is being moved to ADP so is being reviewed again. So since 2012, I’ll have had only 3 reviews. They actually called yesterday to tell me my case had been identified as one of the ones affected by the change in law and I am due a huge back payment. Since I was awarded I have made progress in my life, I went to uni, got a degree (although took me longer than most people), had a baby and I work a full time job. I’m afraid all this will go against me because on the surface it probably looks like I’m well and can cope. However, during this time I have had extended periods of being very unwell and unable to do much. If I didn’t have daily support from my mother, I wouldn’t cope at all, she looks after my child more than I do. I should have never had my baby, but I did and I love them, I just can’t cope with the demands of motherhood. I’ve been employed for just over a year and have had 4 periods of absence and am hanging onto it with the skin of my teeth. If I lose my job and my award, I don’t know what I’ll do.

My sibling on the other hand, was reassessed almost every year even though they had a diagnosis that eventually would kill them and did so earlier in the year. The first award was for 3 years but somehow ended up being reviewed after 1.

To me there is no rhyme or reason to the system. There is definitely evidence of there being targets to meet and assessors denying people due to this. So although I feel that you may try to assess people holistically and honestly, it’s a bit disingenuous to say that assessors don’t try to catch people out or write mistruths on their reports to meet quotas.

I also used to work for the DWP and I know what the culture and attitude towards disabled people is like.

Yep. Hard hat was on as I know this always happens. It doesn’t affect me one bit though, I know that I do my job properly and that I never, ever treat a claimant poorly or seek to embarrass them. That’s all I can do, so if the PP with her comments about being ashamed wanted to get a rise, she was wasting her energy.

I think it's likely the fact that you have managed to pass your test and are capable of driving. Many people with ASD/ADHD will never be able to.

At least that's the running theme on a lot of the support forums when it comes to neurodiversity. Driving goes against you.

Aw great - that must have been a nice surprise!

Yeah it’s very hard for lots of people. I couldn’t tell you how many people have cried down the phone at me because laying it all out has made them realise just how much they have going on.

Sounds like you got a good assessor. Sounds just like it was me, haha. 😁

During my dd's assessment for PIP, I was her appointee and asked for permission to record the call. They allowed it but said I could use it for my own reference but not for dd's assessment.

Yeah, I quoted the PIP assessor in the mandatory reconsideration and appeal because I could rewind back and listen carefully for bias.

I'm just messaging to say that I had to claim PIP last year for the first time ever. My first benefits fullstop! The assessor was honestly lovely she was so nice that she actually made me cry. The whole process is absolutely degrading but she genuinely could not have been nicer. Afterwards I could see she actually steered me towards meeting the criteria and saved me from my own stupid pride - I was hellbent to explain how I was determined not to give up on life!

It really helped that she was a nurse and understood my condition (multiple sclerosis). I was so grateful to her for her humanity. So I'm getting the same vibe from you that I got from her - that you are sincerely trying to help people who deserve additional help. Please don't change, it must be exhausting trying to work within a horrible system without getting compassion fatigue.

My only frustration is that I will have to repeat the process in 2.5 years even though my condition is incurable and progressive. If you ever get a chance to influence changes to this please do point out what a stupid waste of time and resources it is. I got highest rate of everything for four years but sadly at my stage of MS the only direction is downhill (I had it a long time before it was diagnosed). Thank you for doing the AMA.

Yes, if you can drive, you can do everything.

Yes! Did you win the appeal? I bet you did.

Why do you think they do that? Just a power thing?

I cross posted with you but this was my experience too!

I see someone has already explained how to word your answer. I will just add that although pip say not to send any old documents/reports (it is a while since i completed a pip so i forget how old they say they will accept) it is definitely worth submitting any NHS documentation of autism and adhd diagnoses.

My ds had an ADOS and cognitive assessment done by clinical psychologist, speech and language plus a few others on the team and we got a very comprehensive report saying in black and white that he has autism and a learning difficulty. He was 13yrs old when he got that done.

When i last applied, he was 22yrs old so that report was 9 years old. He got a paper based decision with no f2f needed and full award.

I am certain they must have looked at the report i submitted. Conditions like autism are life long so i would submit anything like that, no matter how old.

Driving is a hard one to overcome it you’re claiming for a cognitive/memory/learning condition. Learning to drive isn’t that easy and being in charge of a car shows awareness of danger, ability to cope with change, adequate vision, sequencing skills etc.

For the purposes of PIP, rightly or wrongly, driving can seriously affect your chances of a successful claim.

Yes. I see older reports often. It’s the same with dyslexia, sometimes those assessments are years old.

Helps a lot for conditions like ASD where people are often diagnosed with no further input, so the old letters are all there is.

How do you assess someone when the interview is years after they sent in their forms?

Do they ever just let you do the forms and continue the claim without doing the interview?

Has the criteria for earning points changed in the last few years?

Thank you!

I honestly think if I'd shown them videos of when my involuntary movements became severe after my 3rd baby was born, they'd have seen that I literally couldn't stop twitching. I'd be grimacing, rocking from leg to leg, fingers wriggling, mouth contorting, and my tongue movements would flare up (kind of a bizarre writhing movement). Living with the flare ups when they were that bad was hell, and I was looking after a newborn at the time too.

As my condition is now in remission, it isn't something that would be convincing. I wish it wasn't so hard to get assistance for things like I have. I know people in the US with my movement disorder who are on disability and claim it much more easily.

It's often how you word the answers, and how much medical evidence you supply. Definitely worth getting professional help to complete the claim form.

OP can I ask does it count against you if you don't have recent medical reports?

Dc have high rate due to complex additional needs. But after diagnosis you get discharged (neurodiversity). For some disorders (speech and language developmental for example) its life long but there are no meds and no reviews. You get given exercises/strategies but there's no further input unless there's a crisis.

So the further away from diagnosis you get the more nervous I become. Their needs don't change but there are no reports to be had?

Sorry this crossed with another post about the same issue.

Probably, yeah.

The general public attitude to disabled and/or non-working people is very poor so that definitely comes into it. All the anti-bias training won’t eliminate it fully.

Dd lost on application and mandatory reconsideration. We prepared and submitted dd's 2 inch stack for appeal. The DWP called me up before the appeal and made dd an offer of an enhanced award. I accepted for dd. I would have been happy with a standard award.

It ended well but was a huge uphill climb. Dd earned every penny. I am a lawyer so used to writing this sort of thing but it was still a lot of effort to gather evidence and put it together. The emotional resilience required to appeal is unbelievable. The DWP really make you doubt yourself. Dd has autism. She would not be able to cope. I was lucky to be able to absorb the blows for her and keep going.

Is it going to be the same under Labour?

Dd's award is for 5 years. I dread to go through it again. By then, she would be out of school and there is no one to observe her or write reports in support. I doubt she will be able to get a job and if she did, her employer won't write reports for her.

I didn't say that.

But it's what many applicants are finding. It's even mentioned in one of the guides that it can be used against you. Its an easy way to justify a refusal for some.

I think this is really shit. I managed to pass my driving test over the duration of my award.

With mental health, it’s not as black and white as that if you’re able to drive you must be alright in the noggin. When it’s mental illness I feel the general attitude is if you’re not absolutely batshit and unable to do anything, then you’re at the other end of the scale and are fine and not entitled. It doesn’t take into the variable nature of a serious mental illness.

Funnily enough when I worked for the DWP they managed me out while I was in the process of being diagnosed, they were really quite sneaky about it. Another few months and I’d have been covered by the Equality Act and they knew it. I then had to make a claim for ESA and the assessor basically insinuated that because I wasn’t rocking in the corner of a dark room 24/7 that I was fine.

Just because I live with a mental illness doesn’t mean I’m stupid or unable. I just have (sometimes really long) periods of being unwell and when I’m like this, I avoid driving as I know I’m not able to keep myself or others safe on the road. There’s no nuance during the assessments to explain this though.

Can I ask if working will be held against me at review time? I work 2-3 days a week with maximum reasonable adjustments. I see this determination to work as proof of my strength of character to be honest. That is certainly my employer's attitude too. But could it potentially disadvantage me?

OP as somebody with epilepsy i find the questions very hard to answer,one min im ok the next im on the floor having tonic clonic seizures.
i will never be able to drive due to my seizures but scored 0 points after the third time applying i gave up.
i also suffer with daily migraines that give stroke like symptoms,i very rarely leave the house and im never alone there is always a member of family with me.

I will add that they had phoned both ds's support worker and his gp (though he hasn't been near a gp for years so i don't know what good that did!)

My ds will never be able to drive but he could manage one familiar bus route at the time of claiming and of course all his daytime activities are at the autism group so i suppose it all fitted together to complete the picture.

They are switching his award now to ADP as we are in Scotland. He has a bit of extra documentation more recent now as he went under a legal guardianship and had his capacity assessed by 2 independant clinical psychiatrists for that.

It is hard to find documents once they are out of the school system though.

Here's a question - is each new claim for the same person looked at totally afresh or can they see my ds started on dla at aged 3yrs and has always been awarded? Do they look in the system and see that someone has qualified for years?