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Issues with PIP decision (mental health)

66Mustang
66Mustang Community member Posts: 13,367 Disability Gamechanger

Sorry that this is a rather rambling, long message but I wanted to get everything down. I don’t really have a specific question but I feel I may have been treated unfairly and am looking to see what people think, as well as for any general advice.

I have just had a decision for my PIP. Previously, I was on the enhanced daily living component and the standard mobility component. This has just been cut to the standard daily living component (8 points) and nil mobility (0 points!). 

I suffer from a few diagnosed conditions: autism, OCD, anxiety, obsessional thoughts and depression.

For daily living, I agree with some of what they decided. However looking at their report I scored 0 for some things even though I feel I meet the descriptors for scoring points. I intend to challenge this. 

However, scoring zero for mobility is what most surprised me - last time I scored 10 (I believe this should have been 12 but it was at the time when you couldn’t score 12 for a mental condition - this has changed now) and my condition hasn’t gotten any better since then. My situation is that I cannot go out of the house to make any journey (familiar or unfamiliar) unaccompanied - without my parents, I am housebound. Furthermore, I absolutely cannot use any public transport under any circumstances. All of this was explicitly stated both on my claim form and at my interview.

In spite of this, the decision letter states “I decided you can plan and follow the route of a journey unaided.” This is categorically untrue, and made me think they may have mixed my forms up with someone else’s!

The other issue I have is with the wording in their report. I initially asked for a home visit but was declined as they demanded more evidence from a doctor that I needed one, but I could not get a doctor’s appointment in time. So, I spent several weeks psyching myself up for the interview and managed to attend it, having been taken there and accompanied the whole time by a parent. It took huge effort to attend while retaining my dignity and composure - I was incredibly anxious throughout the entire interview. However, in the report it was stated, “you were not observed to be anxious, agitated or tense” and “there is no evidence of overwhelming psychological distress”. I was upset by the assessor’s view which, seemingly, was that I did not appear distressed, so I wasn’t distressed. The view that physical appearance has this much bearing in relation to a mental disorder seems discriminatory towards someone with a hidden disability. Effectively they are saying, “you didn’t look unwell” which I find very unfair, and sounds like something that someone would say in the 1970s, not 2019.

Just wondering what you think? Am I right to ask for a mandatory reconsideration or do you think I am being unreasonable?

Thanks.

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Comments

  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    Hello @66Mustang   Thank you for sharing..  Sorry to hear what you have ben through.

    I would always appeal any decision. Have a look at our website.

    For advice and guidance.

    I would also advise. Have you considered getting any support for your mental health issues.?

    Often by accessing support can be beneficial to your wellbeing. Can help with anything like this your benefit situation and offer assistance. Be in attendance any interviews and assessments.

    Get floating support or an out reach worker.

    Might not be in all areas .

    I used this one.

    https://www.richmondfellowship.org.uk.

    Hope that gives you some reassurance.  Please get in touch if we can help with anything.

    Some one will know.

    Please take care.

    @thespiceman


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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @66Mustang, lovely to hear from you. I am sorry to hear about how the assessment went, it doesn't appear like everything was taken into consideration and I can completely see why this would be annoying.

    I would consider appealing the decision. Here is some information about the appeal process. The letter should not outline the mistakes in the report. It should have 2-3 real life examples of how you meet the criteria and you have a month from the decision to submit this.

    Also, you may find it helpful to access some local advice. :)

    If there is anything else we can do then please do let us know. 
    Scope

  • Moz
    Moz Community member Posts: 2 Listener
    So it's clear that lots of people, with lots of different issues have had the wrong decision and then money reduced or stopped altogether. This is well known amongst all law firms charities and citizens advice, who deal with these cases and subsequent problems it causes. People have been in real need for help, advice and legal advice. Not long ago the issue came up on the Victoria Derbyshire programme on the BBC. People had wrote in and said they believed that these decisions were Deliberately made and asked for help on how to record it as evidence, the BBC show claimed that all you can do is bye a two-way tape recorder, the same as the police have and then record it, as its usual done in a private building. Whilst this Is the truth, it's NOT the whole truth. The law on this clearly states, if you believe that there is anti social or criminal activity happening, then by law your allowed to video record covertly and that evidence is allowed to be used in any case against them. This CRUCIAL information was kept from the public, which as you know is vulnerable people. What they do at that assessment is wrong, and we All know it. This is one of the ways they have gotten away with it. We'll know you know the law on this, video record them when your there secretly, and I advise everyone to do this as its your right. It cannot be allowed to continue. It makes me mad. My obsession is law politics and rights and this stuff they do drives me MAD!  Well enough is enough. So here I am and there you go, I really hope it helps.

  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    Thanks very much for all of the replies.

    I currently am getting support for my issues from a clinic, they are really good but sadly cannot help with benefits. I am fortunate enough to have very good support from family.

    About the letter - that makes sense. I had written a letter but it does highlight the mistakes in the assessment so maybe needs editing. I haven’t sent it yet. 

    Here is a paragraph example from the letter:

    “You said I can prepare a simple meal with prompting. This is only true some of the time and it has not been acknowledged that I have to wear plastic gloves and/or repeatedly wash my hands whilst doing so. Also, the majority of the time, which I understand is what the decision is based on, someone else has to prepare my meals for me.”

    I have written a paragraph like this for each of the categories that I disagree with.

    Is this OK or does it need some work? Also, should I post up the whole letter so you can have a look at it or is this not allowed/not a good idea?

    Many thanks again!
  • cristobal
    cristobal Community member Posts: 984 Disability Gamechanger
    edited October 2019
    @66Mustang - can I advise that you have another look at your letter, if it's not too late?

    'Preparing food' is, according to the DWP guidelines,

    'the ability to prepare and cook a simple meal for one from fresh ingredients. It assesses ability to open packaging, peel and chop, serve food on to a plate and use a microwave oven or cooker hob to cook or heat food. Serving food means transferring food to a plate or bowl, it does not include presentation.

    Carrying items around the kitchen or carrying food to where it will be eaten is not included ...'

    Washing hands, wearing gloves etc doesn't seem to be covered by this so I'd be inclined to leave this out.

    Why does someone have to prepare your meals? Why is it that you can cook some of the time but not others? Similarly with prompting - why sometimes and not others.

    Can you use a microwave?

    Give examples..

    Good luck with the MR


  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    Not too late - haven’t sent it off yet going to really work on it before I send it. Thanks very much for the tips, I really appreciate the help.
  • cristobal
    cristobal Community member Posts: 984 Disability Gamechanger
    @66mustang - do this for each of the descriptors. They're on line but I'm never able to post a link - search DWP + PIP + Assessment + guidelines and you'll find them..

    I found it best to read through so I had a good idea what was involved, and then make a draft of what I was going to say using a page for each one.

    Be honest - don't try to 'shoehorn' your condition where it doesn't fit.

    Do a little bit at a time.

    Also be aware that you have to be able to do tasks 'reliably' - i.e. safely, timely, to a good standard - there's a definition of this on line as well..

  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    Is this any better?

    “You said I can prepare a simple meal with prompting. This is only true some of the time. The majority of the time someone else has to prepare my meals for me. This is because my OCD becomes so overwhelming that I am unable to touch any of the objects related to preparing food such as utensils, packaging, or buttons on the cooker/microwave as I feel that these items are contaminated. There are times when, if prompted, I will feel able to prepare very simple food such as toast but I still find this very difficult and will often give up half way through the process. Also, I can only use sharp knives when in the presence of someone else due to my obsessional thoughts causing fears that I am going to harm myself.”

    Thanks very much for the assistance!
  • cristobal
    cristobal Community member Posts: 984 Disability Gamechanger
    edited October 2019
    @66mustang - sounds better to me.

    Just wondering if you might be better avoiding phrases like 'this is only true some of the time', and 'there are times when...' and being a bit more specific. How often can you cook? Once a week? Five times a week? Once a month?

    I don't really know anything about your condition, sorry, but bear in mind that if you get 2pts for needing assistance with preparing food you'll need to get points in other areas to get PIP - need 8 points total.
  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    edited October 2019
    Thanks for the tip. Yes I have written a similar paragraph for each of the sub categories (toilet needs, managing medication etc.) that I disagree with, that was just one of them. I will get on and fix the rest of them now!

    Thank you.
  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    I have just gone through the letter and edited it, taking into account your advice.

    Is it OK to post up the whole letter so people can examine it and maybe give me some constructive criticism, or is this not a good idea?

    Thanks!
  • cristobal
    cristobal Community member Posts: 984 Disability Gamechanger
    @66mustang - I really don't know, sorry..I know that you can't post personal stuff ..I imagine if you're not allowed to do it someone will delete it!
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    66Mustang said:

     I was upset by the assessor’s view which, seemingly, was that I did not appear distressed, so I wasn’t distressed. The view that physical appearance has this much bearing in relation to a mental disorder seems discriminatory towards someone with a hidden disability. Effectively they are saying, “you didn’t look unwell” which I find very unfair, and sounds like something that someone would say in the 1970s, not 2019.

    I completely agree with this. I had a similar experience which is very frustrating as the fact the assessor thought I looked ok has been used against me in both the original assessment and the mandatory reconsideration so far.  I've spent a good 15+ years keeping it hidden and working on the outward façade so other people didn't see my 'weaknesses' (OCD, agoraphobia, social anxiety etc) so I would hope I don't 'look' unwell to a random assessor despite struggling hard with many things everyday.  It's a bit ironic there's so many mental health 'awareness' campaigns going around currently while PIP are still using 50 year old perceptions on MH issues.

    Where I would slightly disagree with you is on the following journeys part...to receive the full amount of points for that you have to experience overwhelming psychological distress from any journey - I would suggest that isn't the case for yourself if you were able to maintain some composure at the assessment, though I do believe you should've been awarded something there as you need accompaniment to complete the journey.  I accept the fact I won't receive anything for that myself as I can and do complete journeys with severe anxiety, but not overwhelming psychological distress.

    I also have food prep issues due to OCD (contam & injury fears).  Wearing gloves and handwashing isn't relevant for PIP.  Though you can use that as part of the 'timely fashion' descriptor if your handwashing rituals cause you to take twice as long to prepare a meal as a fully able person.  Problems with food prep due to mental health issues is definitely a grey area and not at all clear cut from all the research I've done.  I have decided to appeal to tribunal mainly for food prep and mixing with people as I have nothing to lose (except what's left of my mental wellbeing lol!).  I didn't score any points at all...the difference with yours is that if you do take it to MR or tribunal, you could also end up losing the points you currently have.  So you need to work out whether it's worth the risk of losing standard daily living or not. 
  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    Thanks for the posts.

    OverlyAnxious, just a question on the mobility - I found these descriptors:

    a. Can plan and follow the route of a journey unaided. 0 points
    b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points
    c. Cannot plan the route of a journey. 8 points
    d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points
    e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points
    f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points

    My situation is that I cannot follow any journey (familiar or unfamiliar) without another person. In fact I cannot leave the house unaccompanied. I’m happy to be told otherwise, but to me it seems I would satisfy the conditions for “f” (12 points)?
  • chiarieds
    chiarieds Community member Posts: 16,007 Disability Gamechanger
    edited October 2019
    Hi @66Mustang - I 'think' you scored 10 points for the above previously (probably a home assessment), i.e. either the d) or e) descriptor. If it was due to e) you cannot undertake any journey, then descriptor f) wouldn't apply.....as you never go out.

    Currently (altho' you wanted a home assessment), the fact that you did get to the assessment centre (as has been commented on above), means it would be difficult to get points for descriptor e). Possibly worth keeping in mind as to which descriptor you now think best describes you, giving examples, if applicable, to the difficulties you faced when last attempted. 

    If you have any further medical evidence (relevant to the time of your assessment), that you haven't already sent in, then send this in with your letter. Remember to put your NI number at the top of everything.
  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    edited October 2019
    Hi chiarieds, many thanks for the response. Last time I did indeed meet descriptor “e”. It was during the controversial ruling that you couldn’t meet descriptor “d” or “f” for a mental health condition. I’m hoping that the fact this has been overturned now means I can meet descriptor “d” if not “f” as I cannot go out without another person. 

    Edit: thanks for the tip. I am seeing my GP in a few days so maybe they will be able to write me a supporting letter. 
  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    A little more info: I do go out almost every day but always need one of my parents to accompany me. They have to plan the journey, engage with anyone who we meet, and just be with me for psychological support. I wouldn’t be able to cope on my own.

    I don’t however need an assistance dog or orientation aid, just another person.
  • poppy123456
    poppy123456 Community member Posts: 53,330 Disability Gamechanger
    It will depend on the reasons why you need someone with you when you out. Is it because of overwhelming psychological distress or because of something else? 

    Posting your MR letter here isn’t going to help because no one knows exactly how your conditions affect you. The only person who knows that is yourself.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    66Mustang said:
    Thanks for the posts.

    OverlyAnxious, just a question on the mobility - I found these descriptors:

    a. Can plan and follow the route of a journey unaided. 0 points
    b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points
    c. Cannot plan the route of a journey. 8 points
    d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points
    e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points
    f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points

    My situation is that I cannot follow any journey (familiar or unfamiliar) without another person. In fact I cannot leave the house unaccompanied. I’m happy to be told otherwise, but to me it seems I would satisfy the conditions for “f” (12 points)?
    Yep, sorry, somehow I got e & f switched in mind since last checking that descriptor.  

    That doesn't make any sense at all...how can you score more points for going out accompanied, than never being able to go out at all!? :# 

    The fact you attended the assessment almost certainly stops you fitting e this time, but would allow you f in the bizarre way they've written those! 


  • 66Mustang
    66Mustang Community member Posts: 13,367 Disability Gamechanger
    Thanks for the posts.

    poppy123456 - they have to plan the journey, talk to any people en route who I may need to talk to, and be there for support. I can’t really explain this last point but I just wouldn’t be able to cope if I was on my own. When out and about I basically follow whichever parent is taking me. Maybe my doctor will be able to help me word this better.

    The reason I wanted to post my letter up was so someone could tell me if it is written in the correct way or not and give me some hints. I already got some helpful advice just from posting up a paragraph from the letter. I’m fine with not posting it though.

    OverlyAnxious - I agree, it is very bizarre you can score more points for going out accompanied, than not going out at all! The only reason I could think of was that PIP is based on how much help you need, and someone who is able to go out with support obviously needs some help whereas someone who is unable to go out at all won’t be getting that help.

    One thing. The report states that they consider my needs based on the majority of days. The thing is my being able to attend this appointment was an absolute one off - not the norm - it took me weeks to get ready to be able to go and I certainly wouldn’t be able to do so on the majority of days. I don’t know how they could say I could do it the majority of days! Not doubting you as I am sure you are right, just seems a bit unfair on their part.

    Thanks again!

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