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PIP Refused - Unusual Circumstances

OverlyAnxious
OverlyAnxious Member Posts: 1,736 Disability Gamechanger
Hello there,

This is my first post here, I've read a few posts on various forums about PIP refusal but haven't found anything specific to my situation so far.  I've just received my PIP decision with 0 points.  I won't be able to go through a tribunal due to my health conditions, but I'm not sure if it's worth trying a mandatory reconsideration.  I am currently on ESA in the support group, and receive housing benefit but only at a shared rate due to my age - however with severe contamination OCD and IBS that causes very frequent bathroom visits I have had to live alone in a small studio flat for the last 4 years which costs almost double the LHA now.  Due to constantly rising living costs, rent, bills, groceries etc I am now at the point where I simply cannot afford to live anymore purely because of my health conditions so applied for PIP because of this.

Basically I suffer from constant anxiety, OCD, agoraphobia, IBS and potentially ASD (as yet undiagnosed).  Due to the difficulties I have around dealing with people socially and the possibility of contamination and illness I have to get through every task on my own, regardless of how difficult I find it.  But the PIP descriptors only seem to apply to people that need another persons help to complete the task.  For example, I have a lot of difficulty preparing food due to the risk of contamination and injury so rely on simple, mainly frozen, foods that can just be placed on a baking tray without the need for preparation and the potential of further contamination.  I can't eat outside of my flat, and I can't eat or prepare food while another person is in the flat let alone allow someone else to prepare food for me (I very rarely have visitors anyway, an hour a fortnight max!).  I also have to do all my own grocery shopping to ensure packaging is not damaged and that foods are not left out of the fridge or freezer for long due to the risk of illness.  I only buy small amounts at a time to reduce the time in store, only visit when traffic and customer numbers will be light and only ever use self serve checkouts.  This is to reduce the risk of personal contamination, IBS and panic attacks, and the amount of time that food is out of the freezer.  I thought this sort of thing would gain me some points in the food preparation or dealing with people face to face but apparently not.  I don't know whether I'm being unreasonable with this though, hence asking on here?  This is just one example, I did fill in other sections as well.

For the above reasons, I also had to fill in the PIP form on my own after being told I could not be helped by the CAB or a local disability charity via email.  I was told that I would have to visit them and have to stay for at least 2 hours to complete the form which I am not able to do.  I am also unable to use telephones due to the severe anxiety that it causes.  I could not have a home visit from a stranger either, as stated above I only have one visitor a fortnight very briefly and find that very difficult.  I spent over 8 hours across 7 days filling in the form with as many details as possible so that I could hopefully avoid the need for a F2F assessment.  I also wrote in the 'special requirements' box, that if a F2F was absolutely necessary then please make it at a time when traffic and waiting room numbers would be low.  I assume they ignored this as they made the appointment for the middle of rush hour!!  I was very ill in the days and hours leading up to the assessment but did make it there with 2 minutes to spare - only to be told that the appointment was cancelled last minute as the assessor hadn't turned up.  I was then given the option to return 2 hours later or phone up to make another appointment.  As I'm unable to use phones I had to take the least worst option and return 2 hours later, I spent the next hour in the bathroom at home and then managed to return just in time, where I then had to wait 15 minutes while the assessor read the form!?  I arrived alone, due to reasons detailed above, and this was of course used against me as expected.  However the assessor also believes that I came across as 'normal' except a little tense and stressed which I don't believe - I do try to maintain a 'solid' exterior as I'm guessing a lot of us do, but that is very different to what's going on inside, relatives have also commented about my lacking social skills with eye contact and processing speeds etc.

Sorry for such a large post but I hope it makes some sense lol.  I just wondered what you think my next move should be now, if MR is worth trying, with the knowledge that I won't be able to follow it up with tribunal if that fails.  And if so, how I could help them to understand my circumstances?

Thanks,
OA
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Comments

  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    Hi,

    PIP isn't about a diagnosis, it's how those conditions affect you. It's also not just about the help you receive, it's about the help you need, whether you receive it or not.

    Shopping only for small amounts at a time to reduce the amount of time the food is out of the freezer will not score you any points for preparing food. This activity is about your ability to prepare and cook a simple meal from fresh ingredients and does not include presentation of food. In my opinion the most you could possibly score here is 4 points for needing assistance even though you don't receive that assistance it doesn't mean you don't need it. What you need to do is explain why you can't do that activity and give a few real life examples of what happened the last time you attempted it.

    Engaging with others, quite possibly attending the assessment alone did go against you. Even though you do go out only at quieter times, you're still able to manage to do this. Whether or not you'll score any points for this activity i'm not sure.

    There's 8 other activities for daily living, have you had a look at those? This link may help you understand the descriptors more.

    To answer your question there's only a 18% chance of the MR decision changing so it's very unlikely it will change at this stage. Most people take it to Tribunal and appearing in person is their absolute best chance of a decision in their favour. 74% of those that do appear have a decision in their favour.

    You can of course ask for a paper based decision for the Tribunal but there's only 5-8% chance of success for this.

    I'm sure others will give their advice when they see this.  @ilovecats maybe able to give their advice too.

    You have 1 month from the date of the decision to request the MR, which should be put in writing stating where you think you should have scored those points and your reasons why. Adding a few real life examples of what happened the last time you attempted that activity for each descriptor that applies to you.






  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    @poppy123456 Thank you for your detailed reply!  Apologies for the duplicate, I got an error message on the first one but it must have posted anyway. :smile: 

    Yes, I was expecting 4 points for the food prep, 2 for communicating and 2 for mixing with people (previously called face to face or similar) which would have awarded me the lower rate of PIP.  

    I did also fill in the 'going out' section.  However, because that is split from the daily living and I have no physical movement conditions, I would have to get the full 8 points on that one to get any award at all which I knew wasn't possible.  I am surprised to have scored none at all there though as I have a lot of difficulty getting out and staying out (severe IBS issues before leaving the house and then agoraphobia makes me very nauseous and wobbly and I feel a constant motion a bit like a weak vertigo) and I am unable to use public transport or even taxi's/lifts which I would have thought should score some points.  Again though, it seems that I would need the help of another person to qualify for that, but because I do things alone I guess that counts as managing it.

    Thank you for the information regarding MR and tribunal.  I will definitely have to think hard about whether or not to try that!

  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    Activity 7 communicating verbally. It will only be possible to score under descriptor B (2 points) if you use an aid or appliance, such as hearing aids.
    Please read link for full explanation of daily living descriptors.

    As you don't have any physical conditions then you won't score any points for the "moving around" part of mobility. For following and planning a journey whether or not it will be possible to score any points here will depend how your conditions affect you. It's difficult to advise on an internet forum.



  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    Activity 7 communicating verbally. It will only be possible to score under descriptor B (2 points) if you use an aid or appliance, such as hearing aids.
    Please read link for full explanation of daily living descriptors.

    As you don't have any physical conditions then you won't score any points for the "moving around" part of mobility. For following and planning a journey whether or not it will be possible to score any points here will depend how your conditions affect you. It's difficult to advise on an internet forum.



    That page is outdated unfortunately, I actually wrote up my answers using that originally while waiting for the form in the post...and then received the 'new' form with different questions so couldn't follow the same descriptors!  Q9 is now communicating, including speech, hearing and understanding.  And Q11 is mixing with people, including Q11b which specifically asks about 'severe anxiety from mixing with people', yet I still scored 0 for that...
  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    It's not outdated as it's updated regularly and the last update to the page in the link was June 2019. The activities in the form maybe numbered differently but they are the same activities just in a different order. Regardless of which activity communicating is, it still has exactly the same criteria which is stated in the link i provided and scoring 2 points here is only possible if you use an aid/appliance.

    Q11 is following and planning a journey and you're ability to following and plan the route of a journey, which is part of mobility not daily living.
  • Pipquestions2
    Pipquestions2 Member Posts: 92 Pioneering
    edited June 2019
    If you have autism then it would be at least 4 points for communication not 2.

    However it's also worth mentioning that generally they lump communication problems associated with autism under mixing with people, poppy's daughter for example. So you could score 0 despite having communication problems.  

    To get 4 points in communication you need to require social support to explain or understand complex things verbally. I was awarded this so it's not impossible but it can be hard apparently. When answering things I find difficult I rely on others to help because of the troubles I have expressing it and the huge amounts of stress it causes me attempting to which can spiral into panicking etc.

    Communication problems associated with anxiety or autism is hard to prove on paper due to the nature of it anyways and you kinda have to see it for yourself. Those are the kind of descriptors that are most likely to be awarded based on face to face rather than what's written on paper. 
  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    Yes communicating with others, my daughter scored 0 here but i didn't contest this because she already scored 17 for daily living and 12 for mobility, which is Enhanced for both parts.
  • Pipquestions2
    Pipquestions2 Member Posts: 92 Pioneering
    Yes communicating with others, my daughter scored 0 here but i didn't contest this because she already scored 17 for daily living and 12 for mobility, which is Enhanced for both parts.
    Didn't you say hers was done on paper too? 

    If that's the case that's possibly why she didn't get points for communicating. It's a hard thing to prove on paper and is generally something that needs to be seen in person to judge. 

    But you do read a lot of people with autism who score 0 points for communicating which is just ridiculous given the whole point of the disability it's a bit like giving someone with no legs 0 points for walking. There should be another descriptor focused on autistic people who can speak on their own fully but find it difficult and it causes them a lot of stress to do so , right now they would get 0 points (I think) which doesn't seem fair and ignores the problem
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    It's not outdated as it's updated regularly and the last update to the page in the link was June 2019. The activities in the form maybe numbered differently but they are the same activities just in a different order. Regardless of which activity communicating is, it still has exactly the same criteria which is stated in the link i provided and scoring 2 points here is only possible if you use an aid/appliance.

    Q11 is following and planning a journey and you're ability to following and plan the route of a journey, which is part of mobility not daily living.
    Q11 is mixing with people, which isn't mentioned on that page at all.  Either that page is wrong or I got an old form?


  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    The PIP form is Q1-15 they are not set out as the PIP activities itself, this is totally different and where you're getting confused.

    The PIP descriptors are these, which is the same as the link i posted but more detail. https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    Yes communicating with others, my daughter scored 0 here but i didn't contest this because she already scored 17 for daily living and 12 for mobility, which is Enhanced for both parts.
    Didn't you say hers was done on paper too? 

    If that's the case that's possibly why she didn't get points for communicating. It's a hard thing to prove on paper and is generally something that needs to be seen in person to judge. 

    But you do read a lot of people with autism who score 0 points for communicating which is just ridiculous given the whole point of the disability it's a bit like giving someone with no legs 0 points for walking. There should be another descriptor focused on autistic people who can speak on their own fully but find it difficult and it causes them a lot of stress to do so , right now they would get 0 points (I think) which doesn't seem fair and ignores the problem
    Her review was paper based but first application was face to face. Both scored 0 for that activity despite needing support to communicate with other people.
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    The PIP form is Q1-15 they are not set out as the PIP activities itself, this is totally different and where you're getting confused.

    The PIP descriptors are these, which is the same as the link i posted but more detail. https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

    Ah I see, yes you're exactly right, I thought each question linked to one activity.  What an odd way to do it! :/

    That also explains why they added some activities on the decision letter that I definitely hadn't answered questions for.  These were washing & bathing, and dressing.  I'm physically able to do these without any problem so hadn't filled in those pages.  I'm guessing they used the obsessive washing of hands, body & clothes, and frequent clothing changes due to severe contamination fears for those sections...but I was already aware that wasn't part of the PIP criteria.
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger


    But you do read a lot of people with autism who score 0 points for communicating which is just ridiculous given the whole point of the disability it's a bit like giving someone with no legs 0 points for walking. There should be another descriptor focused on autistic people who can speak on their own fully but find it difficult and it causes them a lot of stress to do so , right now they would get 0 points (I think) which doesn't seem fair and ignores the problem
    Autism is a difficult one to judge even in person due to such a large and varying spectrum.  I can read and write no trouble at all (thank goodness for email, messenger and forums!) but speaking, listening and processing verbal information is one area where I really struggle and it causes a lot of stress before, during and for several hours after the event.  I've always found social situations extremely difficult so just kept out of the way through school etc...I learned enough just to be able to get through brief social interactions where absolutely necessary and spent the rest of the time on my own.  'Polite & quiet' is the only way I was ever described...as if kids are meant to be polite and quiet!  I also managed to keep severe OCD issues totally hidden from even close relatives for over a decade so I wouldn't trust anyone's judgment on mental health at a brief F2F assessment...

    I haven't been diagnosed with ASD yet, I reckon it may have helped my case if I had, although as you say, it's not a definite. I've been told the waiting lists are huge, but it may also be a logistical issue as I don't know how far I'd be expected to travel for it or how long it would last.  With totally unpredictable IBS it's also difficult to get to any appointment on time let alone stay there long.

    I don't believe the PIP criteria is fair to mental illness anyway.  Surely the point of PIP is to pay for extra things that we need compared to 'normal' people.  In my case I don't need to pay for someone to help with going out but some help towards fuel costs would be useful as I'm unable to use public transport.  With the OCD and IBS I have to spend a lot more on water, electric (for water heating and washer/dryer), cleaning fluids and loo roll than most people for example.  I'm also not able to live in shared accommodation purely because of my conditions which incurs extra costs.  I hate having to rely on benefits and feel guilty for not being able to support myself, but at the same time I don't know what people in my position are meant to do when the ESA doesn't cover it despite budgeting as hard as I can.
  • Pipquestions2
    Pipquestions2 Member Posts: 92 Pioneering
    Yes communicating with others, my daughter scored 0 here but i didn't contest this because she already scored 17 for daily living and 12 for mobility, which is Enhanced for both parts.
    Didn't you say hers was done on paper too? 

    If that's the case that's possibly why she didn't get points for communicating. It's a hard thing to prove on paper and is generally something that needs to be seen in person to judge. 

    But you do read a lot of people with autism who score 0 points for communicating which is just ridiculous given the whole point of the disability it's a bit like giving someone with no legs 0 points for walking. There should be another descriptor focused on autistic people who can speak on their own fully but find it difficult and it causes them a lot of stress to do so , right now they would get 0 points (I think) which doesn't seem fair and ignores the problem
    Her review was paper based but first application was face to face. Both scored 0 for that activity despite needing support to communicate with other people.
    It does sound like she should get the 4 points also, it's strange she hasn't been awarded them. Not that it would make much of a difference since she gets enhanced both but it's nice to get the points you're entitled to and not have certain aspects of it basically brushed off as if they don't effect her when the communication problems are likely a huge reason for all her anxiety aswell.

    It makes me think my problems with it are a lot worse than your daughters but it doesn't really sound that way, if it's worse I wouldn't say it's by much but obviously harder to judge on a forum. Could also be a situation where tribunal judges are more lenient to this descriptor than the assesors? either way I think given that I managed to get 4 points for it, you should fight extra hard for them at her next review.
  • poppy123456
    poppy123456 Member Posts: 28,525 Disability Gamechanger
    PIP isn't about a diagnosis, it's how your conditions affect your ability to carry out daily activities based on the PIP descriptors. Although the ASD assessment report can have some very useful information in it, which would help for evidence. My daughters report is fantastic and goes into a lot of detail but she didn't have this diagnosis when i first claimed PIP for her and she was awarded Enhanced for both parts from the beginning. (in 2017)

    She can also read and write very well, in fact it's 2 of her strong points but communication through face to face, texts and phones is zero. The only people she will speak to this way is myself and her sister. For communication with other people she needs support and doesn't cope well with social situations of any kind. She attends college but even here she has support the whole time she's there. Speaking, listening and verbal information is an area she struggles with. Despite all this and having evidence to prove it with 3 assessment reports from various Consultants she still scored 0 here.

    All you can do at this point is to request the MR and when writing the letter give those real life examples of what happened the last time you attempted that activity for each descriptor that applies to you. Try to avoid mentioning any lies that may have been told in the report because they won't be interested in any of these.

    Good luck.
  • Pipquestions2
    Pipquestions2 Member Posts: 92 Pioneering
    edited June 2019


    But you do read a lot of people with autism who score 0 points for communicating which is just ridiculous given the whole point of the disability it's a bit like giving someone with no legs 0 points for walking. There should be another descriptor focused on autistic people who can speak on their own fully but find it difficult and it causes them a lot of stress to do so , right now they would get 0 points (I think) which doesn't seem fair and ignores the problem
    Autism is a difficult one to judge even in person due to such a large and varying spectrum.  I can read and write no trouble at all (thank goodness for email, messenger and forums!) but speaking, listening and processing verbal information is one area where I really struggle and it causes a lot of stress before, during and for several hours after the event.  I've always found social situations extremely difficult so just kept out of the way through school etc...I learned enough just to be able to get through brief social interactions where absolutely necessary and spent the rest of the time on my own.  'Polite & quiet' is the only way I was ever described...as if kids are meant to be polite and quiet!  I also managed to keep severe OCD issues totally hidden from even close relatives for over a decade so I wouldn't trust anyone's judgment on mental health at a brief F2F assessment...

    I haven't been diagnosed with ASD yet, I reckon it may have helped my case if I had, although as you say, it's not a definite. I've been told the waiting lists are huge, but it may also be a logistical issue as I don't know how far I'd be expected to travel for it or how long it would last.  With totally unpredictable IBS it's also difficult to get to any appointment on time let alone stay there long.

    I don't believe the PIP criteria is fair to mental illness anyway.  Surely the point of PIP is to pay for extra things that we need compared to 'normal' people.  In my case I don't need to pay for someone to help with going out but some help towards fuel costs would be useful as I'm unable to use public transport.  With the OCD and IBS I have to spend a lot more on water, electric (for water heating and washer/dryer), cleaning fluids and loo roll than most people for example.  I'm also not able to live in shared accommodation purely because of my conditions which incurs extra costs.  I hate having to rely on benefits and feel guilty for not being able to support myself, but at the same time I don't know what people in my position are meant to do when the ESA doesn't cover it despite budgeting as hard as I can.
    Being diagnosed with Autism wouldn't really have helped you. It's about how your disability effects you and not what it says on a sheet of paper.

    You could in theory go to PIP with no diagnoses, professional care or medication at all and walk out with enhanced both, it would be hard to convince them of your problems are real and you're not just talking out your ass but it's possible.

    My diagnosis is severe social anxiety. I have been tested for autism and ADHD, failed both by quite large margins yet every person who deals with me professionally asks me if I've been tested for both of them. I have no problems with lights, sounds, hearing, facial expressions and so on and because of that it's almost impossible for me to pass the autism test but I do think I have a very limited (but severe) form of autism that mainly only effects my communication.

    Severe social anxiety got me 4 points for communicating and engaging with others. Given how hard it seems to be to get points for communicating as you can see with Poppy's daughter who has been diagnosed with autism so on diagnosis alone she deserved it more than I did but she got 0 points, I'd say that's evidence that your diagnosis doesn't matter much at all.
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,736 Disability Gamechanger
    The reason I say I think a diagnosis would've helped in my case is that it was specifically mentioned in the decision paragraph that I didn't have one.  Just seems odd to mention it if it wasn't relevant to thier decision.

    I guess each assessor and each decision maker will all have slightly different judgements anyway though, I agree that it sounds as if Poppy's daughter should definitely have got some points there!

  • Pipquestions2
    Pipquestions2 Member Posts: 92 Pioneering
    edited June 2019
    The reason I say I think a diagnosis would've helped in my case is that it was specifically mentioned in the decision paragraph that I didn't have one.  Just seems odd to mention it if it wasn't relevant to thier decision.

    I guess each assessor and each decision maker will all have slightly different judgements anyway though, I agree that it sounds as if Poppy's daughter should definitely have got some points there!

    Those letters are pre written statements and they just click a few boxes to copy certain ones into the letter. Most of the letters say the same sort of thing. 

    Mines was very similar to yours. Went on about how I don't have this, haven't done this, aren't on this and that. In the end absolutely none of that mattered when I went to tribunal they weren't interested in any of the **** the DWP wrote. The only thing they were interested in was how I was effected. 

    In the end wether your diagnosed with anxiety, autism, or anything, that doesn't change how you're effected. Having a diagnosis just makes it easier for the assessors to believe your problems really but it doesn't change anything. The ways in which you're effected remain the same and to be honest so many people are misdiagnosed these days, and every single person had varying degrees of severity, relying solely on a diagnosis is a bit silly

    It's hard and I didn't completely follow the advice I'm about to give you either lol so I'm guilty as charged but you really just have to ignore what they say and explain how you're effected and give evidence where possible. Ignore the DWP unless it's in response to something the DWP said that matches the descriptors  (which 99% of it won't) then you should correct them if they are wrong / misinformed. The best advice anyone can give is to ignore literally everything they've wrote and focus on yourself. Don't defend yourself - just explain yourself.
  • JumpingJames
    JumpingJames Member Posts: 29 Courageous
    I have very very similar conditions to you and was awarded PIP so it is possible but I had to go to tribunal (but did not attend for the reasons you stated).

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