PIP, DLA and AA
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Have your say about your online community! Complete our annual survey.

PIP Refused - Unusual Circumstances

OverlyAnxiousOverlyAnxious Member Posts: 1,230 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

Replies

  • poppy123456poppy123456 Member Posts: 22,218 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.






    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.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 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!

  • poppy123456poppy123456 Member Posts: 22,218 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.



    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 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...
  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • Pipquestions2Pipquestions2 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. 
  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • Pipquestions2Pipquestions2 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
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 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?


  • poppy123456poppy123456 Member Posts: 22,218 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

    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.
  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 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.
  • Pipquestions2Pipquestions2 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.
  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • Pipquestions2Pipquestions2 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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 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!

  • Pipquestions2Pipquestions2 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.
  • JumpingJamesJumpingJames Member Posts: 19 Connected
    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).
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    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).
    Do you mind me asking which parts you were awarded points for in the end?  The more I read the descriptors (now I know they're separate from the questions!) the more I'm struggling to work out if I really fit into any of them.  It comes back to the question in my original post really - the descriptors all seem to need another person (or physical aid) to help with these things, but because I get through on my own I don't see how I'll be awarded anything. :disappointed: 
     
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    Also just to update the thread, the assessment report should be in the post on it's way to me now in case I do go for an MR.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You really can't compare anyone else to yourself. Even someone with the same conditions could well be affected very differently.

    You an have a disability but not be entitled to PIP because if those descriptors don't apply to you, you won't score the points for an award.
    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.
  • Pipquestions2Pipquestions2 Member Posts: 92 Pioneering
    edited July 2019
    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).
    Do you mind me asking which parts you were awarded points for in the end?  The more I read the descriptors (now I know they're separate from the questions!) the more I'm struggling to work out if I really fit into any of them.  It comes back to the question in my original post really - the descriptors all seem to need another person (or physical aid) to help with these things, but because I get through on my own I don't see how I'll be awarded anything. :disappointed: 
     
    It's also worth mentioning that you might not have someone/something to help you, but you need it, then you will still get points. It's not about the help you get, it's about the help you need. 

    You might not even realise yourself areas that you should actually get aid in because you're so used to it. Eg if your so depressed you don't have any motivation to do things, even though you don't get any help you would still need help in the form of prompting. The prompting descriptor doesn't require someone to come up to you and tell you exactly what you have to do it's more complex than that. 

    Reading the descriptors at face value can be misleading because they have "hidden" meanings that are more complicated to understand that's why you probably need face to face advice to help you understand the descriptors and which ones you meet.

    You said you had agoraphobia for example, based off that alone your probably likely to get points for planning a journey.  Of course you might not get any but I'd say odds are in favour of it. But you would have to explain what happens when your out alone (are you alone?), If this happens in familiar or unfamiliar places, if you panic explain what happens when you panic. Does it keep you housebound? Explain this aswell. Does it get worse when you're around people? 

    Then you said you have trouble being around people. This will probably net you points for engaging with others face to face you need to explain this aswell because even though you may not get help to do this, If you have as much trouble as I'm assuming from your posts, then you most likely do need help you just don't fully realise it. 

    You should focus on the descriptors but if you don't understand what they mean you should get face to face advice or explain how it effects you in as much detail as possible in a general sense
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger

    It's also worth mentioning that you might not have someone/something to help you, but you need it, then you will still get points. It's not about the help you get, it's about the help you need. 

    You might not even realise yourself areas that you should actually get aid in because you're so used to it. Eg if your so depressed you don't have any motivation to do things, even though you don't get any help you would still need help in the form of prompting. The prompting descriptor doesn't require someone to come up to you and tell you exactly what you have to do it's more complex than that. 

    Reading the descriptors at face value can be misleading because they have "hidden" meanings that are more complicated to understand that's why you probably need face to face advice to help you understand the descriptors and which ones you meet.

    You said you had agoraphobia for example, based off that alone your probably likely to get points for planning a journey.  Of course you might not get any but I'd say odds are in favour of it. But you would have to explain what happens when your out alone (are you alone?), If this happens in familiar or unfamiliar places, if you panic explain what happens when you panic. Does it keep you housebound? Explain this aswell. Does it get worse when you're around people? 

    Then you said you have trouble being around people. This will probably net you points for engaging with others face to face you need to explain this aswell because even though you may not get help to do this, If you have as much trouble as I'm assuming from your posts, then you most likely do need help you just don't fully realise it. 

    You should focus on the descriptors but if you don't understand what they mean you should get face to face advice or explain how it effects you in as much detail as possible in a general sense
    Thanks again, I wish I'd joined this forum before filling in the original PIP form lol!  

    Getting face to face advice is probably the best way to go but it's extremely difficult in my position.  I can get to the local disability advice centre, but probably not on time due to IBS physically stopping me leaving the bathroom, and once I'm there it's 50/50 whether I'll actually be able to go inside or not.  Then trying to deal directly with a person face to face is more than I can cope with on top of that.  I have very little medical history because of this, on the rare occasion I can get into the doctors surgery (severe contamination OCD & medical/illness phobias), I can't really speak to them once I'm there, but I do completely understand that they, and any assessors, can only go on what I do say, not what's left stuck inside my head.  I've also tried CBT twice in a non-medical environment but had exactly the same problem and only managed 2 sessions before having to give it up as it was making things worse.  It's not just the mental side stopping me getting words out either, dealing with people (any people, including my own relatives) makes me feel very nauseous and causes a tight throat and reflux which physically stops me being able to speak without going to gag so I just end up giving nods or one word answers most of the time.  It also makes me have to keep swallowing which of course adds fluid and air to the stomach which just makes it all worse so I try to limit visits with my Mum or Nan to just half an hour or so, and then have to put up with hours of a sore throat and stomach issues afterwards.  Trouble is, I can't even explain this to the person I'm trying to speak to, partly because it's embarrassing and I don't want them to feel responsible for my body's poor functionality, but also because I can't even say the word 'nausea' without feeling really ill!    I've tried writing letters to various Doctors but never really got very far with it because they only want to deal with speech, either face to face or on the telephone, which is useless for me sadly, I get the same thing on the telephone as I do in person.

    I am diagnosed with agoraphobia, although I'd never even considered it before the diagnosis because I'm not actually housebound and never have been.  The irony is I'm also very claustrophobic as well!! I find leaving the house very difficult, I can't travel far and can't stay out for long.  CBT theory says the anxiety should eventually drop but with me it just keeps rising and rising until I have a meltdown, fortunately I have just made it home in time not to have a meltdown in public view so far, but it's always on my mind and I do roughly know my limits, but they're getting shorter.  I'm also constantly worried about soiling myself due to the IBS while out, or getting ill or injured in thousands of different ways, I suffer with strong sensory overload (lights, sounds, motion, colours etc), I can't cope with crowds or a lot of things going on at once.  This was diagnosed as agoraphobia but I've never been particularly happy with that diagnosis myself.  Having said all that, I do force myself out at least 3 times a week, and I do drive short distances, both of which mean I'm not entitled to any journey/planning points as far as I understand.  And definitely not the 8 points that I'd need to get the mobility part anyway.  I have to go out on my own, I can't cope with going out with another person (relative etc) as that just adds extra anxiety and massively reduces the amount of time that I can cope with the situation.  I also can't take public transport, including taxis or lifts, so have to rely on my car and ability to drive, though I do live within walking distance of a supermarket in case I am ever stopped from driving on mental grounds.

    The food preparation descriptor is one I'm struggling to understand.  I am able to sustain myself with simple meals by just placing something in the oven.  It does take me longer than a normal person due to excessive handwashing rituals and having to separately open each packet and open drawers & cupboards etc so I can then 'prepare' by only touching the food and utensils without having to touch anything that could be contaminated.  I can't handle raw meat/fish/egg at all due to contamination fears and I can't prep raw veg due to fears of injury with sharp knives and peelers etc.  So it depends how far in depth they go with this, I do know someone else with similar contamination OCD who got the full 8 points for not being able to prepare food at all...but I can't say I totally agree with that either as they live alone and do basic meals the same as I do.
  • Pipquestions2Pipquestions2 Member Posts: 92 Pioneering
    edited July 2019
    @OverlyAnxious you need to explain WHY you can't do it though, not just "well I can't mix with people cause of anxiety", you need to explain exactly what happens when you do mix with people. Although things like this will be noticeable at Tribunal anyways, it's worth writing down.

    I don't know much about IBS tbh, or if it's worth mentioning in terms of the descriptors (someone else will be able to correct me if I'm wrong). How often are you having to rush to the toilet? How often are you here? Are you in pain? simply writing "I'm late to appointments cause I'm on the toilet" probably won't get you any points.

    I know exactly how it feels with the lack of medical evidence. I got quite lucky I was forced into hospital and have hospital records describing my problems because of the way I acted in hospital as a result of being left alone and my anxiety getting worse not long before I applied for PIP. Those were the only real evidence I said, plus a few other letters from doctors.

    You said you've been to CBT but had to give it up. Why did you have to give it up? simply saying "it made me worse" won't be good enough, you have to explain specifically why it made you worse, what you did, how you reacted. Go into as much depth as possible. This would come under mixing with people.

    You need to write the problems getting words out and with your throat under communication.  If someone kept asking you the same question and demanded an answer out of you, which you struggled to answer, what would happen? how do you react? this is the kind of thing you have to write down to explain how your communication problems effect you. The stuff you write about doctor's is exactly my position aswell, I find it hard and because of that there's really not much in my medical record. Luckily my Doctor's know me and know my problems and I don't have to really explain it to her if I need something. She does try to push me into explaining it but when she sees me struggle she says okay it's fine I'll do it basically.

    I agree it sounds like you would probably get 4 points for planning a journey.

    Food one is difficult but it depends. You say fear of injury, have you ever injured yourself? what makes you think you're gonna injure yourself?

    You're explaining your problems but for a lot of it, you aren't really explaining the why, and the why is what PIP is focused on.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    IBS may score points for managing toilet needs.

    ‘Toilet needs’ is defined as:

    (a) getting on and off an unadapted toilet;

    (b) evacuating the bladder and bowel; and

    (c) cleaning oneself afterwards.

    Help is needed with managing toileting if a claimant needs assistance with one or more of these 3 actions.

    It's not taken into consideration for any other activity.

    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.
  • JumpingJamesJumpingJames Member Posts: 19 Connected
    I will not say on a thread but I will in private message.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I will not say on a thread but I will in private message.
    Unfortunately, you need to have made 25 posts before you can private message others on the forum.
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    IBS may score points for managing toilet needs.

    ‘Toilet needs’ is defined as:

    (a) getting on and off an unadapted toilet;

    (b) evacuating the bladder and bowel; and

    (c) cleaning oneself afterwards.

    Help is needed with managing toileting if a claimant needs assistance with one or more of these 3 actions.

    It's not taken into consideration for any other activity.

    Yeah, I won't score any points for that, again it's about the physical help you need rather than the frequency of bathroom visits, even if you can't always make it in time.   
  • katiesymonkatiesymon Member Posts: 59 Connected
    Do you make it to ESA Assessments ? Maybe you don't have them too often but have they arisen ? Its a hard question if you cant go to a hearing. The question would be then is how much is PIP ? Is it worth the worry and anxiety. If it is then do the MR.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    @OverlyAnxious you need to explain WHY you can't do it though, not just "well I can't mix with people cause of anxiety", you need to explain exactly what happens when you do mix with people. Although things like this will be noticeable at Tribunal anyways, it's worth writing down.

    I don't know much about IBS tbh, or if it's worth mentioning in terms of the descriptors (someone else will be able to correct me if I'm wrong). How often are you having to rush to the toilet? How often are you here? Are you in pain? simply writing "I'm late to appointments cause I'm on the toilet" probably won't get you any points.

    I know exactly how it feels with the lack of medical evidence. I got quite lucky I was forced into hospital and have hospital records describing my problems because of the way I acted in hospital as a result of being left alone and my anxiety getting worse not long before I applied for PIP. Those were the only real evidence I said, plus a few other letters from doctors.

    You said you've been to CBT but had to give it up. Why did you have to give it up? simply saying "it made me worse" won't be good enough, you have to explain specifically why it made you worse, what you did, how you reacted. Go into as much depth as possible. This would come under mixing with people.

    You need to write the problems getting words out and with your throat under communication.  If someone kept asking you the same question and demanded an answer out of you, which you struggled to answer, what would happen? how do you react? this is the kind of thing you have to write down to explain how your communication problems effect you. The stuff you write about doctor's is exactly my position aswell, I find it hard and because of that there's really not much in my medical record. Luckily my Doctor's know me and know my problems and I don't have to really explain it to her if I need something. She does try to push me into explaining it but when she sees me struggle she says okay it's fine I'll do it basically.

    I agree it sounds like you would probably get 4 points for planning a journey.

    Food one is difficult but it depends. You say fear of injury, have you ever injured yourself? what makes you think you're gonna injure yourself?

    You're explaining your problems but for a lot of it, you aren't really explaining the why, and the why is what PIP is focused on.
    Ok, so when trying to mix with people I feel very wobbly and shaky, my heart races and my breathing gets very short and sharp.  I get fuzzy vision, nausea, light headed, reflux.  I feel a slight constant motion (a bit like vertigo but while on the ground) along with other motions that aren't there, such as suddenly feeling like 'dropping' through the floor, being picked up and pushed forward or a solid floor feeling 'spongy' under foot.  All of which makes me feel like I will fall or pass out.  This is also often what triggers IBS and the sudden need to evacuate bowels, presumably it's too overwhelming for my brain to cope with.

    IBS is about a lot more than just frequent toilet visits, but it's not uncommon for me to have to go 5-10 times on a fairly average day with either diahorrea and constipation, and never knowing which it's going to be (sorry TMI!).  I also suffer from what I'll call an IBS attack which is absolutely horrendous for someone that can't cope with illness at all.  They used to be fairly few and far between but are now happening once a week on average.  These last for several hours and along with having to suddenly and urgently pass large amounts of stool & water without warning,  it also makes me feel very nauseous with fuzzy vision and a strong sensitivity to light and motion even in my own home, it causes bowel cramps and spasms which are extremely uncomfortable, I get very bloated with both gas and liquid which can cause such bad pain that I can barely walk from my chair to the toilet.  After the event I suffer from extreme fatigue and it can take days to recover.  These can also last well through the night stopping me being able to sleep.  However, while that is what helped me to get ESA for being unable to work, it's totally irrelevant for PIP sadly.  

    With the CBT, just knowing I'd have to go again in under a weeks time was causing me such severe anxiety and IBS at home that it stopped me being able to go anywhere else during the week, I couldn't sleep for more than an hour or so each night, and I ended up being 30 minutes late to the 2nd appointment due to IBS physically stopping me leaving and agoraphobia mentally stopping me leaving.  I was unable to get to the 3rd one at all.  Oddly, I find the first time of anything the easiest.  I think it's because every event I try goes badly and worse than I expected, so the first time I can fool myself into thinking it won't be so bad...after that first time I know exactly how bad it's going to be!  Explaining how these things affect me are definitely not easy though, and I do realise that only I can do that part lol.

    I honestly don't know how I'd react if someone kept demanding an answer, I'm trying to think of a scenario where that may have happened.   I'd probably get up and run if I felt like I was being pressured into an answer that I just couldn't get out.  I wouldn't get violent or anything like that so there'd be no risk to anyone.

    4 points for planning a journey isn't helpful unfortunately.  Because that's part of mobility, I'd need 8 points there to get any award at all as I don't have any physical mobility issues with walking etc.

    Injury one is a hard one to explain without people thinking I'm gonna top myself (I'm not, I couldn't cope with failing and just getting injured, but I wouldn't complain if I was to just go in my sleep!).  Basically I can't cope with having to be alive and owning a body, I can't cope with the 'processes' it has to go through constantly, I can't cope with bodily fluids, and noises, and things coming out of various orifices, or things having to be put into it constantly, I just get by one day& at a time, sometimes just one hour at a time, but really cannot cope when things go wrong with it (even things that seem small to other people like a minor cut or a cold), I'm constantly dreading the day where something goes so badly wrong that I need another person to give medical help or have to go into a hospital.  I'm very squeamish (there must be an actual medical word for that lol?), I can't even stand looking at my own body parts (eyes, teeth, cuts/bruises, etc) in the mirror let alone other peoples.  I can't stand blood or needles, I actually came over funny just typing that!!  Last injection I had caused me to pass out which resulted in carpet burn across my face...an open wound potentially contaminated by a public carpet!  So I actively avoid anything that could cause me harm, although obviously in the real world that is totally impossible so I just have to work with a certain level of risk (causing constant anxiety) but trying not to add any extra risk to that.  I could risk chopping a carrot, but the overwhelming fear there is that I slip with a sharp knife and cause myself an injury that I can't cope with, and would potentially need medical attention for.  I also get intrusive visions of the thing that I'm dreading happening, so if I was to try chopping the carrot I'd be constantly seeing myself slipping with the knife, which leads to a lack of concentration and ultimately often does end in injury, albeit 'minor' so far.

    I wish I could find a Doctor that does understand my problems, I didn't go for well over 10 years, but when I did I wished I hadn't!  Once I finally found one that had a small amount of understanding she left soon after and I was moved onto another that seemed to have no idea of mental issues at all.  He couldn't understand why someone with contamination OCD and a fear or injury & illness wouldn't be able to get to the surgery in the middle of winter flu season!!  

    Sorry, I'm rambling again lol!  I really do appreciate all the help and advice on here so far though! :)


  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    Do you make it to ESA Assessments ? Maybe you don't have them too often but have they arisen ? Its a hard question if you cant go to a hearing. The question would be then is how much is PIP ? Is it worth the worry and anxiety. If it is then do the MR.
    ESA assessments are a bit of a sore point with me!  The first experience I had with ESA was not a good one, I was treated very poorly and felt extremely embarrassed and like a massive burden after trying to hand in a printed and fully filled ESA form as I can't use phones.  I was given the wrong information, told I'd have to wait there for several minutes while someone else phoned it through (instead of being able to post it) and my personal issues were shouted across the open plan room to other staff.  In the end I was sent to another department in a different building where they took literally seconds to take the form and put it in a mail bag which they should have done in the first place!

    Then sadly I was called to a face to face assessment.  I was left waiting in a crowded, town centre, open plan office well past my appointment time, not told what was causing the wait or how long it might be.  In the end I had to leave urgently, got stuck in rush hour traffic and soiled myself on the way home. :(   This event knocked me back so much that I was unable to reach the centre for several weeks afterwards.  I sent an email explaining this and was awarded ESA without a F2F assessment.

    Last year, the Doctor I mentioned in the above post decided he wouldn't sign me off for that years ESA form without me visiting the surgery in the middle of winter flu season.  I tried explaining via email and post that I was unable to do that because of my conditions but they clearly had no understanding of this and just kept pushing.  I understand it's a requirement for them to see the patient within 6 months or so, but I had literally been there 3 months earlier and he had just forgotten!! (He was also absolutely useless at that appointment as well, and I have now changed to another Dr).  In the end I was forced to go to (my first) ESA assessment about 3 months later.  Fortunately the waiting times weren't too long this time and the waiting room was fairly empty, cool and quiet so I did manage to get into that assessment but it still caused me an awful lot of stress which has long lasting effects.  The ESA assessor couldn't understand why I was there and why the Dr has caused so much trouble with it!  

    I don't believe PIP is worth all this worry and hassle...but I'm literally at the point where I can't afford to live on what I get and don't know what else I can try.  I already severely limit groceries and fuel, and don't buy anything other than those, I don't drink or smoke or anything like that.  I couldn't afford to have the heating on after February.  And since a recent rent increase and further electricity & grocery increases I'm really struggling even in the middle of summer...I don't know how I'll get through winter without some extra income.  If PIP does fail the only other thing I can try is a discretionary housing payment to cover the extra rent that I am currently having to take out of the ESA.  But I've read that the DHP isn't really meant for health issues and it's also only a short term thing while the claimant seeks affordable accommodation.  There is no affordable accommodation for me because I'm only allowed a shared amount but can't share due to my conditions.  As a man, I'd have to be 35 before being allowed enough rent to cover single person accommodation and I'm a long way off of that.  I am also checking for cheaper studio flats every day but there aren't any, which isn't really surprising as this was the cheapest when I originally moved here.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    UPDATE - I've read through the assessment report now - I can understand why I wasn't awarded anything tbh, there's not a huge amount in it relating to the descriptors, partly my fault for the paper part (I wrote a novel hoping to avoid a F2F, didn't know it was meant to be brief and didn't know about the differences between questions and descriptors) and partly the F2F which I obviously didn't do well because of my conditions.  Although I did get one laugh from the report...it says I can't use 'pubic transport'...which isn't wrong, as a contamination OCD sufferer I struggle with handshakes let alone the thought of touching 'pubic' transport... :D

    On a serious note though, would any of the more experienced members on here have a quick read of my MR before I send it?  I know I'll have to make a few more posts first. :) 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger


    On a serious note though, would any of the more experienced members on here have a quick read of my MR before I send it?  I know I'll have to make a few more posts first. :) 
    I'm afraid no one will be able to do that because we don't know exactly how your conditions affect you against the PIP descriptors. Just make sure that you've added at least a couple of real life examples of what happened the last time you attempted that activity for each descriptor that applies to you. Good luck.
    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.
  • Pipquestions2Pipquestions2 Member Posts: 92 Pioneering
    edited July 2019
    UPDATE - I've read through the assessment report now - I can understand why I wasn't awarded anything tbh, there's not a huge amount in it relating to the descriptors, partly my fault for the paper part (I wrote a novel hoping to avoid a F2F, didn't know it was meant to be brief and didn't know about the differences between questions and descriptors) and partly the F2F which I obviously didn't do well because of my conditions.  Although I did get one laugh from the report...it says I can't use 'pubic transport'...which isn't wrong, as a contamination OCD sufferer I struggle with handshakes let alone the thought of touching 'pubic' transport... :D

    On a serious note though, would any of the more experienced members on here have a quick read of my MR before I send it?  I know I'll have to make a few more posts first. :) 
    What poppy said really, the best thing is to focus on the descriptors and read/ask on this forum to understand what they actually mean to see if you actually fit them or not and then list examples of your difficulties relating to the descriptors. The only thing people can really do to help is answer wether your troubles, as described by you, fit the descriptors or not. 

    Don't be in a rush, read what you've written multiple times over and maybe even make a diary of your day/week just incase you missed anything. 

    Also, "can't" not "won't". I think this is important and you see a lot of people using them interchangeably.
     
    The important thing to remember is that the MR probably will stay the same and nothing will change no matter what you write or send in but it's good to write it all down and send evidence of it where possible because the tribunal will get this too. Tribunal is what you should be focused on to be honest, that's where you're most likely to get points and be awarded PIP at this stage. 

    I scored 0 at assessment, 0 at MR and won PIP at tribunal. The tribunal did nothing different except ask me questions relating to what I wrote on the MR form. My answers were the same as I wrote down so really absolutely nothing changed other than tribunal correcting my award. 

    It's a difficult and stressful process but you do seem to have an understanding of PIP now so I'm sure you'll have no trouble writing a good MR. The hardest part for you now will be getting the evidence to back up what you've said. Letters from the doctors, reports from your medical record etc can come in handy here. 
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger

    The hardest part for you now will be getting the evidence to back up what you've said. Letters from the doctors, reports from your medical record etc can come in handy here. 
    No worries, I do understand everyone's claim and abilities are different. :smile: 

    I can't get any extra evidence unfortunately, there simply isn't any!  I've rarely been to the Doctor's at all and when I have been they haven't understood the issues anyway.  So all I have is the stuff I sent in before, a fit note (with diagnosis) and a mental assessment from 3 years ago.  I don't have anything more recent and even if they ask my current Dr, I've only seen him once and that was for something irrelevant to PIP anyway.  I know they have no reason to believe me without any evidence but short of wearing a GoPro to record my day I don't see how I can find anything else.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    A fit note is not classed as evidence for the purpose of PIP because PIP isn't about not being able to work. People claim PIP and work.
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    A fit note is not classed as evidence for the purpose of PIP because PIP isn't about not being able to work. People claim PIP and work.
    That's a shame, it's the only thing I've got from a Doctor with a diagnosis on so thought it might be of some use.  :(  

    The Doctor that issued it is the only one I've seen that had some idea of my problems but she left about 2 years ago due to her own disability so I can't even ask her for any evidence.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    A fit note is only used for ESA or universal credit purposes for those that have a limited capability for work. Although because it's 2 years old, it wouldn't be accepted for that either. Even then it's not classed as evidence.
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    A fit note is only used for ESA or universal credit purposes for those that have a limited capability for work. Although because it's 2 years old, it wouldn't be accepted for that either. Even then it's not classed as evidence.
    Fair enough, it was used for the ESA claim 3 years ago, I don't have anything more recent though.

    I have just requested access to my medical 'coded' record online (I can only see a summary currently with basically nothing in it!) but I'm not sure what's actually in the coded one or if there'll be anything of use.  Bearing in mind I've never been hospitalized or sectioned, what sort of thing would count as evidence of mental issues from a GP?
  • pcoventrypcoventry Member Posts: 149 Pioneering
    edited July 2019
    The last time I went out the Police were called - I got so stressed by there being so many people around me I got agressive and threatened to punch the shop assistant out if they didn't stop asking me stupid questions about warranty.

    And yet the DA said I had no problem interfacing with others and gave me 0 points

    All witnessed by my support person both then and now.

    I think they go back - put a blindfold on and just play pin the tail.. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    If you've had appointments in the past the Consultant usually writes to the GP, this maybe of use as evidence. Other than that, i'm not really sure what else you can use. All you can do is give those real life examples for each descriptor that applies to you.

    There's a very high chance the MR decision won't change and Tribunal is your next step. As advised appearing in person gives you a 74% chance of success. Success for paper based decisions drop drastically to between 5-8%.


    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.
  • Adrian_ScopeAdrian_Scope Testing Team, Scope community team Posts: 7,985 Scope community team
    Hello @OverlyAnxious. If you can identify the descriptors you think you meet, you could list them here for us and how/why you think you meet them and we could discuss it with you which may help?

    It's not ideal but I know how hard it can be when you can't get out for face to face support and communities like this are your only resource for help. 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    Thanks all, I have posted the MR now so it's another waiting game at the minute.  I've read it can take 10 weeks though so I'm trying not to dwell on it as there's nothing I can do for now. :smile:
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited July 2019
    The 10 weeks is just a guide but there's really no timescales. Most decisions do remain the same. Good luck and do let us know the outcome.
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    The 10 weeks is just a guide but there's really no timescales. Most decisions do remain the same. Good luck and do let us know the outcome.
    Hi Poppy,

    Should I get a confirmation text when they've received the MR letter?  It's been a week since I posted it so I'm starting to wonder if I used the wrong address, with the 4 weeks deadline for MR I don't want to leave it too long if I have to post another copy!

    I had a text for the original form and the assessment form within about 3 or 4 days iirc.
  • buzzerbuzzer Member Posts: 107 Pioneering
    edited July 2019
    Should I get a confirmation text when they've received the MR letter?  It's been a week since I posted it so I'm starting to wonder if I used the wrong address, with the 4 weeks deadline for MR I don't want to leave it too long if I have to post another copy!

    I had a text for the original form and the assessment form within about 3 or 4 days iirc.
    Give the PIP helpline a call 0800 121 4433 to confirm they can see the MR on their screen 

    Try & be kind to one another even if we may have different views. 

  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    buzzer said:
    Should I get a confirmation text when they've received the MR letter?  It's been a week since I posted it so I'm starting to wonder if I used the wrong address, with the 4 weeks deadline for MR I don't want to leave it too long if I have to post another copy!

    I had a text for the original form and the assessment form within about 3 or 4 days iirc.
    Give the PIP helpline a call 0800 121 4433 to confirm they can see the MR on their screen 
    That's a last resort tbh.  I find phones extremely difficult and was ill for days after having to phone for the assessment report, I really don't want to have to go through that again.  I don't know why they can't do things online, and they add insult to injury by writing 'it's easier to phone' on their paper forms for disability benefits...for a lot of us it isn't!!  It's not even like they have enough staff to answer the phones within a reasonable time.  It would much quicker, easier (and cheaper for them!) if we could just access an online system to check the claim progress/status and just click a link to have the assessment reports posted for example.  Even for personal/specific things, emails are far easier to deal with than calls as they can be stacked up and dealt with in order at any time, unlike phone calls that have to be dealt with immediately leading to overly busy times and waits of over half an hour.

    While we're on the subject, I also didn't receive half of the travel costs that I should have done because my F2F assessment was cancelled when I got there the first time.  I had to phone another number after the PIP one to try and get the extra money (provider instead of DWP) and couldn't verbally explain to the call handler what the problem was.  She didn't really understand me but typed an email to someone else whilst I was on the phone...it would have been so much easier for me to type the email and I could even attach a photocopy of the travel costs form I'd posted as proof.  This was 2 weeks ago and I've never heard back from them or received the extra money into the account so assume they aren't going to rectify it.  I could really do with it for groceries this week but just can't face another phone call so will just have to go without it now.  
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    They don't always acknowledge receipt of the MR request letters. I've heard some receive then and some don't. It can take 10 days for them to be uploaded onto the computer and sometimes longer for them to send a text saying it's been received, if they even send one at all.

    There's no timescales for any decision.
    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.
  • worried33worried33 Member Posts: 399 Pioneering
    edited July 2019
    Technically PIP isnt about diagnosis, but diagnosis seems to be used as a gateway to awarding descriptors, on my f2f, 90% of the questioning was about diagnosis, I also have a friend who's conditions didnt change between two assessments, but on the first assessment they had no diagnosis, on the second assessment they did have a diagnosis, the form was filled in the same on both assessments, and the evidence was the same on both, the only thing that changed was the diagnosis, on the first assessment zero points on everything, on the second, got the points for what she wanted.

    When I won my last DLA tribunal some years back, the DWP's basis was "lack of clinicial" evidence, the tribunal kept querying it again and again, and all they kept getting back was "lack of clinical evidence", when I asked the chair what that meant he told me they were not happy I had no diagnosis and were trying to use that as a means to deny the benefit, but he disagreed with them as the law states diagnosis should not be relevant to an award.

    You can get an award without diagnosis, just its very tough due to how the DWP operate with their reliance on it.
  • WaylayWaylay Member Posts: 921 Pioneering
    edited July 2019
    0 points at review assessment and MR for mental + physical disabilities, even with evidence including letters from counsellor and NHS MH service worker. No extra evidence at tribunal, but wrote in depth about how both types of disability affect me. They questioned me for ~30 mins. 19 points, standard/standard.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    It does seem to depend heavily on who you get for the decision I think.  I don't know how much of it is actually law and how much is just guidelines.  This is where the issue comes in with severe OCD preventing meal preparation, because they're meant to use something like fresh meat, veg and potatoes to mean 'a meal' which I absolutely cannot do at all (so 8 points) but because I can physically use an oven without excessive danger I didn't get any points for that section.  As far as I know, the 'fresh ingredients' part is just a guideline rather than part of law though so it is down to the decision makers discretion.  Either way, a diagnosis certainly can't hurt the claim so would be useful to have, especially when I don't have any other evidence.

    Out of interest, what counts as a diagnosis?  Should there be something on the GP's record that specifically says 'diagnosed with XXX' or does it need to be done by a specialist?  It's now been 2 weeks since I requested online access to my medical record and but it's still a 'pending' request so I still don't know if there might be anything useful in it.  How hard it can be to click the 'allow' button within 2 weeks... :/  

    I've sort of given up on getting many points for verbal comms or mixing with people due to the very specific (and in my opinion discriminatory) nature of those descriptors.  So the best chance I have of getting any PIP at all will be with food prep which I tried to focus more on in the MR, trying to explain what happens with examples as I was suggested to on here.  
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    It doesn't really matter who the decision maker is because they will mostly go with the report.
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    It doesn't really matter who the decision maker is because they will mostly go with the report.
    I didn't word that well but was including everyone involved in the decision process, they're all human and can use their discretion and interpret things differently.  So two people that have very similar problems but have different assessors/decision makers/tribunal judges can have a very different award outcome. 

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You very rarely get 2 people the same, which is why 2 people with the same condition may not be awarded the same.
    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.
  • sceneparadesceneparade Member Posts: 81 Connected
    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. 

    In my experience, that 4 points for ASD isn't true. I have failed ADOS assessments and face-to-face social interaction and communication assessments by psychiatrists specialising in autism, and yet they said my communication and interaction was normal. Made no sense. Effectively, the assessor said in the report that she knows more than the psychiatrists who are EXPERTS. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Or zero in my daughters case....
    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.
  • Pipquestions2Pipquestions2 Member Posts: 92 Pioneering
    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. 

    In my experience, that 4 points for ASD isn't true. I have failed ADOS assessments and face-to-face social interaction and communication assessments by psychiatrists specialising in autism, and yet they said my communication and interaction was normal. Made no sense. Effectively, the assessor said in the report that she knows more than the psychiatrists who are EXPERTS. 
    I didn't mean that your guaranteed to get it but that it would be most appropriate if you were to be awarded any points 

    @Ilovecats says 2 points though ? But I don't see how an aid etc would help someone with autism. Maybe I'm missing something but some autistic people would need either communication support or can't speak at all, which is 4+ points? I'm struggling to see a situation where someone with autism can speak with an aid?
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    I understand what @Pipquestions2 is saying here and i agree. 2 points will be for needing an aid/appliance, which wouldn't be of any use to those with autism. C,D,E is communication support not prompting.


    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.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    No, it's communicating.
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger

    In my experience, that 4 points for ASD isn't true. I have failed ADOS assessments and face-to-face social interaction and communication assessments by psychiatrists specialising in autism, and yet they said my communication and interaction was normal. Made no sense. Effectively, the assessor said in the report that she knows more than the psychiatrists who are EXPERTS. 
    This is what I meant about different assessors earlier in the thread...if you see an assessor from a physical health background they may be fantastic at the physical examination and understanding how physical conditions impact you.  But have very little understanding of mental health issues.  I assume they just get given a very basic guide on MH in the assessor training but it's really not good enough.    My assessor clearly didn't understand how even the assessment was affecting me when I was right in front of her, let alone other situations.


  • mikehughescqmikehughescq Member Posts: 5,762 Disability Gamechanger
    A lot of over-analysis here on a fairly simple issue. @OverlyAnxious I think you can articulate yourself well in writing and probably don’t need face to face advice. What you do need is directing to the correct part of the PIP regs and notably the concept of reliability. See the bottom of https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

    Any activity you can’t complete in a reasonable time cannot be completed reliably and therefore you ought to score 1e and 9di at minimum on the information you have provided above. Plenty of other points available too on daily living and mobility. The fact you managed to go to an assessment is utterly irrelevant to social engagement as has been held repeatedly at first tier tribunal and upper tier tribunal. I’m sure you’ll find https://pipinfo.net/activities/engaging-with-other-people-face-to-face useful on this. 

    PIP assessments clearly treat mental ill health very poorly indeed. The evidence to Parliament on the point has been overwhelming although some still seek to defend assessors in circumstances which are largely indefensible. However, it’s worth noting that the focus on mental health focuses attention away from the fact that at the end of the day the assessment process itself is simply not fir for purpose. 

    No disability benefit has ever required diagnosis. All that’s required are real symptoms and the ability to articulate those with real world examples. There’s little point in worrying what an assessor thinks. By and large it you can get to tribunal their perspective is picked apart logically and they quickly move on to the more relevant issue of whether you qualify. Disproving an assessor is not the same as pricing entitlement to PIP. 

    It can’t be emphasised enough that generalities about I have x so can’t do y are assertions and not evidence. Saying you have difficulty preparing food “because” is just an assertion. You evidence the assertion with a real world example. A meal you attempted to prep with help which you had to abandon because your elements took too long. The when; where; how; why; who with; what next. Everything. 
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    They don't always acknowledge receipt of the MR request letters. I've heard some receive then and some don't. It can take 10 days for them to be uploaded onto the computer and sometimes longer for them to send a text saying it's been received, if they even send one at all.

    There's no timescales for any decision.
    Hi Poppy, just letting you know I've received the confirmation text today...6 weeks after I posted the MR!  :o  

    Does that mean there's likely to be a huge backlog and a very long wait for the decision or is still a totally random timescale? 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    There's no timescales. Hopefully not too long.
    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.
  • OverlyAnxiousOverlyAnxious Member Posts: 1,230 Disability Gamechanger
    A lot of over-analysis here on a fairly simple issue. @OverlyAnxious I think you can articulate yourself well in writing and probably don’t need face to face advice. What you do need is directing to the correct part of the PIP regs and notably the concept of reliability. See the bottom of https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

    Any activity you can’t complete in a reasonable time cannot be completed reliably and therefore you ought to score 1e and 9di at minimum on the information you have provided above. Plenty of other points available too on daily living and mobility. The fact you managed to go to an assessment is utterly irrelevant to social engagement as has been held repeatedly at first tier tribunal and upper tier tribunal. I’m sure you’ll find https://pipinfo.net/activities/engaging-with-other-people-face-to-face useful on this. 

    PIP assessments clearly treat mental ill health very poorly indeed. The evidence to Parliament on the point has been overwhelming although some still seek to defend assessors in circumstances which are largely indefensible. However, it’s worth noting that the focus on mental health focuses attention away from the fact that at the end of the day the assessment process itself is simply not fir for purpose. 

    No disability benefit has ever required diagnosis. All that’s required are real symptoms and the ability to articulate those with real world examples. There’s little point in worrying what an assessor thinks. By and large it you can get to tribunal their perspective is picked apart logically and they quickly move on to the more relevant issue of whether you qualify. Disproving an assessor is not the same as pricing entitlement to PIP. 

    It can’t be emphasised enough that generalities about I have x so can’t do y are assertions and not evidence. Saying you have difficulty preparing food “because” is just an assertion. You evidence the assertion with a real world example. A meal you attempted to prep with help which you had to abandon because your elements took too long. The when; where; how; why; who with; what next. Everything. 
    Thanks for the detailed reply Mike. :) 

    Sadly I've realised I made a silly error in the Mandatory Reconsideration letter regarding food prep.  I stated that it is impossible for me to prepare a meal from fresh ingredients as the guidelines state, due to overwhelming distress caused by the OCD (slightly more wordy that that but whether it's still an assertion rather than evidence I'm not sure!).  However I do have to prepare all meals myself as I can't have another person breathing and touching things in the flat let alone anywhere near the food.  But the error I made was writing that it takes me at least '50% longer' to prepare the basic foods such as sandwiches...having now read the guidelines I see that will be disregarded as it needs to be twice as long for the 'timely' criteria.  Truth is I have no idea how long it takes a normal person to do these things.

    If I was to attempt a meal from fresh ingredients it would definitely take well over twice as long, but of course I can't put both that it'll take twice as long AND that I'm totally unable to do it...(I'm probably still overthinking this!) 

    The closest I've got to 'fresh' ingredients recently was trying to cook a refrigerated breaded chicken fillet in a shrink wrapped tray.  It was meant to be a 'treat' but went badly wrong.  Still a long way from proper prep but I had to give it up in the end, I don't know how to say this in a way a normal person/assessor would understand though.  I know it sounds absolutely ridiculous and it makes me feel so pathetic & embarrassed, I haven't detailed this to anyone in real life so far despite having to go through it for almost 20 years now, the few people I have told in the last 5 years just get a few basic assertions without any detail at all.

    Because of the shrink wrapping I had to use a knife to open it which contaminated the knife, and further contaminated the worktop I had to place it on (slightly less hassle than contaminating the washing up bowl by placing it there).  I then felt like the condensation from the inside of the shrink wrapping had 'splashed' the cupboard doors, the hob and the wall tiles.  Once I had removed the shrink wrapping I had to place the damp tray on the worktop, directly and severely contaminating that.  Then had to go through extra handwashing rituals both before and after handling the chicken escalope and got stuck in a major handwashing loop afterwards as I just couldn't get rid of the feeling of contaminants and felt like I had now also contaminated the sink, tap, handles and washing up bowl.  I felt like I had contaminated more or less the whole kitchen by the time I'd managed to open the packaging and get it on to a tray.  At which point I noticed the time and realised it'd taken me over half an hour just to do that, half an hour out of the fridge felt like more than long enough for bacteria to grow to unacceptable levels so I had to discard it after all that effort & anxiety.  I then had to completely disinfect the whole kitchen before attempting any more food prep.  I finally had a couple of pieces of toast around 2 hours after I'd originally started and was absolutely exhausted.  The stress of the situation caused excess fatigue as well as stomach & bowel issues for the next couple of days.

    However, here's why I'm struggling with the PIP criteria... I have frozen breaded chicken once a week. That is in a cardboard box though, I don't have to use any utensils to open it, there's no crinkly plastic to 'splash' anything, and don't have to directly touch the product or place it on the worktop.  I just shake it out directly onto the oven tray, discard the box and place the tray in the oven all within a few minutes (not timed it but it's certainly acceptable).  I then have to go through a handwashing ritual in case there were contaminants on the box, however that's a manageable one, unlike the major loop after directly touching raw meat.

    I still don't really know whether I fit the criteria or not.  If we're assuming that PIP is purely designed to pay for a carer to come in and cook a meal then of course I don't meet that as I do get by without.  But I'm also a long way from being able to prepare a proper meal from fresh ingredients and I obviously don't have a healthy diet.

    It's also worth noting that trying to eat every meal causes major anxiety and usually results in having to run to the loo either during or immediately afterwards and often causes a panic attack as well.  I'm terrified of putting food into my body knowing it has to come out again one way or another but again I don't meet the PIP descriptor for nutrition because I do force myself to eat each day...

    If I do have to go to tribunal I don't know what I should be focussing on even after having the descriptors and regs over and over again. 
Sign in or join us to comment.