PIP, DLA and AA
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PIP assessment report distress

Jaki_McJaki_Mc Member Posts: 9 Connected
Firstly, apologies as this post could be a bit rambly, but I think I need some help, advice and maybe a little rant.

The background...

I am a carer to my son, Ollie, who is 22. He was diagnosed with autism when he was 2 and a half, and with dyspraxia when he was 10. We successfully claimed for DLA when he was 3, and each successive claim was also awarded at higher rate care and higher, then lower rate mobility. He attended mainstream school, where he spent part of the time in the resourced base, and the rest in regular classes with a one-to-one. After school he spent two years part time at college on a course for living/independence skills. After that he had a short, part time placement in a cafe, run by Enable Scotland, although he wasn't able to help serve customers and spent all the time behind the scenes, learning more life skills. He has always needed help and support in every area of his life, physically, mentally and emotionally, from myself and my husband.

Fast forward...

A little while ago we applied for PIP. He was sent a letter with an appointment for an assessment in a centre but after calling the centre I requested a home visit, which was agreed to without issues. Cue high levels of anxiety from then on for Ollie. But, for some unknown reason, the assessor didn't turn up so I jumped straight on the phone and was given another appointment. I prepared him (again) as best as I could and the appointment did seem to go okay. Not too much hassle and I thought we gave the assessor a good, clear picture of Ollie's many difficulties.

Present day...

I received a copy of the assessors report in the post. Well. Im still in a state of shock. The report is riddled with lies and almost everything we said has been twisted. It's safe to say that the final decision will be the worst possible outcome - zero points for everything. Here are some examples... The assessor asked Ollie if he could put food in the microwave and he said yes. And he can. But he has no idea what to do next. He can't understand the instructions and would burn himself on hot plates. He needs supervision when in the kitchen. Therefore he cannot make his own meals... but the assessor reckons he can because he can put a packet in the microwave. She also thinks he can budget and manage his money perfectly well... because he sat a maths test at school, and knew that £1 minus 75p was 25p. She also thinks he has a perfectly good level of concentration because he can play a computer game. So obviously he can concentrate on everything else. He can't. And the lies... wow. She said he spelled a word backwards. She never asked him to do that. She said he remembered three words when asked. Again, never asked to do that. She said he followed three step instructions. Guess what. Never asked. In fact we stated that he CAN'T remember more than two instructions at a time. She said his long and short term memory was fine. We told her they weren't. She stated that Ollie is capable of planning an unfamiliar journey, and making it, alone. We had told her the exact opposite. She said Ollie saw her out of the house after the assessment. He didn't, I did. And I'm missing out so much more.

I know it could be a few weeks before we hear the final decision, but I've started planning for the MR already. I'm going to the CAB tomorrow, I have a welfare rights officer phoning me in the next few days, my husband has emailed our MP and I have a bundle of notes ready to draft into a letter for the MR.

I would be grateful if anyone can give me more tips at this stage.

One thing I am desperately worried about is the tribunal. There is no way on earth that Ollie could cope with that. Is it possible for me to go alone? Or do they really need to see my son in a massive amount of stress leading ultimately to a meltdown?

Im so fed up it's ridiculous. I hate the fact I may have to put my son through something so distressing. The guilt is terrible.

Anyway, that's me. Thanks for hearing me out but I'm not sure if I feel any better...

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    Mostly they go with the report but it has been know for them to go against it but it's rare.

    Once the decision's been you have 1 month from that date to request the MR. You should put this in writing stating where you think he should have scored those points and your reasons why. Adding a couple of real life examples of what happened the last time he attempted that activity for each descriptor that applies to him.

    You should avoid mentioning any lies that may have been told in the report because you can't prove that is what happened or not. The DWP and Tribunal won't be interested in any of those. They will only be interested in where you think he should have scored those points. Any complaints about the report should be sent to the health assessment providers.

    Most MR decisions remain the same so you'll very likely have to take it to tribunal. Appearing in person will give him the best chance of a decision in his favour and they will want to see him. It's very unlikely that the panel will allow you to attend on his behalf. If he's still unable to attend then a telephone hearing maybe possible but waiting times for these could possibly be longer.

    Waiting times for hearings for those who appear in person is about 1 year sometimes longer. Backlogs are huge across most of the country.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Jaki_McJaki_Mc Member Posts: 9 Connected
    Hi @poppy123456, thanks for your reply.

    There's been a wee change in things since I posted the above. My husband was utterly fuming after reading the report and decided to step in. I was pretty worried he was going to mess things up but there's a chance he may have done some good. He's not one for following the rules and often does things his own way. Weirdly he tends to get better outcomes doing this! Last night he made contact with our MSP and MP and they're both willing to keep in contact and help us. This morning he phoned Atos to make an official complaint over the phone. The girl he spoke to took lots of notes (and read them all back) and advised him that someone would be in touch in a couple of days, with a view to resolve the complaint within two weeks. She also told him to contact the DWP and repeat what he'd told her. He did this, stating that if a Case Manager was to assess my sons claim based on the report given it would be an incorrect decision, as the report contained nothing relating to my son - all the information was false. The DWP have now halted the claim, no final decision will be made (luckily it hasn't been looked at yet) until a new assessment has been carried out to override the first one. My son's DLA claim will remain in place and all benefits will carry on. On the down side this will probably leave my son's anxiety level floating around some undiscovered planet, but on the plus side we now know how to go about things better. And to record the assessment! It's safe to say they will definitely see how affected my son is and it will all be there on record.

    I will keep this post updated on how things go, in case it may help someone else. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    That's great. May i ask if you have that in writing?
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Jaki_McJaki_Mc Member Posts: 9 Connected
    At the moment, no. I hope I'm not being naive in thinking that people will do as they said they would. We do have names and assurances that notes have been made and actions have been taken, however. And my OH will not let things go wrong if he can help it. He's a good 'un :smile:
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hi @Jaki_Mc. I'm sorry to read about your initial experience with your son's PIP assessment and report but it's great to see that they've taken your complaints seriously.

    In case you're not aware, there are a few rules in place when it comes to recording a PIP assessment which I've copied below for you.

    "Sessions can be recorded. There are a few important points to note if you wish to do so:

    • You will need to give us 3 working days notice before your assessment.
    • We will ask you to sign a recording agreement. This tells you how you can later use the recording, and helps us keep your details confidential.
    • You will need to use your own recording equipment. To protect all parties, DWP restricts approved devices to those that produce two identical recordings simultaneously. Please note that this does not include laptops, tablets, smartphones or MP3 players."
    Please keep in touch and let us know how you and your son get on. I hope you get another appointment quickly. 
    Senior Community Partner
    Scope

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  • OverlyAnxiousOverlyAnxious Member Posts: 1,254 Disability Gamechanger
    Jaki_Mc said:
    She also thinks he has a perfectly good level of concentration because he can play a computer game. So obviously he can concentrate on everything else. He can't. 
    I was asked the question about computer games as well, I've been wondering what on earth it had to with PIP ever since!

    I assumed it was meant to prove manual dexterity of using a game controller (so would also be able to peel veg etc for meal prep), I hadn't thought about the mental side and concentration levels.

    The assessor even asked what games I played...which I thought couldn't have any relevance at all! But now you've said that, I do only play one Xbox game because I struggle to remember the different control functions between different games.  That wasn't specifically asked or written on the report though.


    Anyway, back on topic, it sounds like you got a positive result yesterday, good luck going forward. :)
  • Jaki_McJaki_Mc Member Posts: 9 Connected
    Thank you @Adrian_Scope, that info is much appreciated! I was going to search for it at some point but you've saved me a Google trip.. thanks again :smiley:

    @OverlyAnxious the assessor also asked my son which games he played. I thought she was just being friendly. Silly me. But thank you for the good luck wishes, we're keeping our fingers crossed. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I would definitely request that in writing because it's rare to have another face to face assessment. If a decision maker notices any contradictions in the report against the evidence you sent then it's more likely the report could be returned to the health assessment providers for a different HCP to take a look, rather than another face to face assessment.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Jaki_McJaki_Mc Member Posts: 9 Connected
    edited September 2019
    We have been told by the DWP that the next step for them is to request a revised report from the health assessment providers, and they will be ignoring the original report. That could be, as you say, just someone else looking at it, although we were made aware it could mean another assessment. I guess we'll have to wait and see. But we will be asking for everything in writing from now on. I could kick myself for not asking for it earlier. 
  • cristobalcristobal Member Posts: 966 Disability Gamechanger
    edited September 2019
    @Jaki_Mc - although Activity 10  is 'Making budgeting decisions'  this includes calculating change after making a purchase.. so if your son can take 25p from a pound correctly then he can make a simple budgeting decision.

    It's very difficult sometimes to explain/ evidence why you can carry out some task and yet not others and I can only suggest that you persevere as best you can for the MR. 

    For example if your son plays computer games then, as others have said, it will be assumed that he has good levels of dexterity, concentration, able to understand instructions, respond to changing circumstances etc. It might be worth explaining tasks that he has difficulty with such as cooking food in a microwave, and how he can not do this yet can play a game on the computer...

    It is very difficult I know - my memory/ cognition is so bad that I struggle to do basic arithmetic and can't remember the name of my favourite song when it comes on the radio - but I can drive a car and I'm fluent in three languages!!

    It's hard to get this across sometimes - because of the assumptions that are made.. I hope things turn out OK and don't prove too stressful...
  • Jaki_McJaki_Mc Member Posts: 9 Connected
    edited September 2019
    That's the worst thing, isn't it - trying to preempt the assumptions that will be made. I think I'm figuring it out more now though. It's just so awful that we have to fight this hard. I can see myself ending up at the docs at this rate :wink:
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Have a read of this, it will give you a better understanding of the PIP descriptors and what they mean. It's very easy to think you should have scored x amount of points but when you take a closer look you realise it's most likely not possible.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Jaki_McJaki_Mc Member Posts: 9 Connected
    Thanks @poppy123456 I did familiarise myself really well with the descriptors before I filled the form in. I followed guidelines and read up on tips and hints. I worked out, using the worst case scenario, that Ollie would still qualify for the enhanced rate of both care and mobility. I will have a good read of that link though. 
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