MR phonecall questions — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

MR phonecall questions

rosie118
rosie118 Member Posts: 28 Connected
edited October 8 in PIP, DLA, and AA
I submitted my mandatory reconsideration letter about 11 weeks ago and just had an unplanned phone call. 

I am autistic and it's fair to say she completely tied me in knots to get the responses she wanted. 

On preparing food - she said if a meal appeared in front of me, could I heat it up in the microwave. If I could then I don't need help or supervision to cook meals. Is that right? If I can physically put it in the microwave I don't score any PIP points?

On communicating - she said this is only relevant if you are deaf or physically unable to talk. That understanding communication does not fall into this. That autism struggles can only score points for engaging with people, not communicating. Is that true?



Comments

  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    If you are able to use a microwave to cook a simple meal but can't use a conventional cooker this should score 2 points.
    Communicating can apply to an Autistic person it just depends on how your conditions affect you. Although my daughter didn't score points here either but she does struggle with communication but because she already had Enhanced daily living it was pointless challenging that.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,613 Disability Gamechanger
    Hi @rosie118 - to answer your questions, if you are unable to prepare a simple meal, but can use a microwave, for that activity you would get 2 points. For the communication activity, this certainly is relevant for anyone who is deaf etc., but not exclusively so as others, especially with mental health issues, can have difficulty with communicating too. So it can overlap with engaging with other people face to face, & points could be awarded for both activities.
  • rosie118
    rosie118 Member Posts: 28 Connected
    If you are able to use a microwave to cook a simple meal but can't use a conventional cooker this should score 2 points.
    Communicating can apply to an Autistic person it just depends on how your conditions affect you. Although my daughter didn't score points here either but she does struggle with communication but because she already had Enhanced daily living it was pointless challenging that.
    Thanks for the reply. 

    I explained that my issue is with processing food. Some days I can't process preparing food at all but most days I need help and prompting to do it. I said with the microwave thing it didn't take away that I would need my partner to hand it to me and support me in preparing it. More encouragement and reminding than anything. Otherwise I don't eat. She said prompting to eat was only relevant for depression and didn't make sense for autism? Asked me if I had considered that I have a 'phobia of food'!?

    She claimed to understand autism but it didn't come across like that at all. 

    She kept asking me 'why' I couldn't do things and I said I don't know? I'm not a consultant in autism? I just know my mind doesn't work the same way as others and struggles to get from 'I'm hungry' (if it can even get that far) to figuring out a meal infront of me. 

    Really frustrated by the call and losing hope with any of this PIP claim thing. If the tribunal is going to be like that i just can't face being judged and spoken to like that again. 


  • rosie118
    rosie118 Member Posts: 28 Connected
    chiarieds said:
    Hi @rosie118 - to answer your questions, if you are unable to prepare a simple meal, but can use a microwave, for that activity you would get 2 points. For the communication activity, this certainly is relevant for anyone who is deaf etc., but not exclusively so as others, especially with mental health issues, can have difficulty with communicating too. So it can overlap with engaging with other people face to face, & points could be awarded for both activities.
    I did tell her though if my partner stood with me and guided me through cooking I could prepare a meal but I can't process it. I would need supervision and help. So I said a microwave wouldn't change that, I would still need my partner to encourage me and tell me to do it and how long for and what to use etc. It's processing all those little things that i can't do day to day when it overwhelms me. 

    With communicating her example was 'you would be able to respond to a fire alarm'. Which is just about the most ridiculous example to say to an autistic person. I said, 'no, I wouldn't?'. She said that's not possible that you can work and not be able to respond to a fire alarm. Obviously a fire alarm is something most autistic people will struggle with. I would just hit sensory overload and panic mode and in no way be able to vacate safely through people. 

    I didn't have the words to get her to understand and ended up giving up to be honest. She was just saying I was obviously capable of those things. She made it sound like PIP was only for physical disabilities and I know that isn't the case. 
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    It would be impossible to speculate anything at this point. Some people have random phone calls from a decision maker before they make a decision and some don't. About 50% of people successfully have the decision changed at MR stage. If you're not happy once the decision's been made then it's Tribunal.
    If it gets to that stage and you haven't already sent anecdotal evidence then this is recommended and will be the best evidence you can send.
    You can also get some expert advice from an agency near you and if you can get representation then even better. At the moment there's nothing more you can do but wait.
  • calcotti
    calcotti Member Posts: 3,069 Disability Gamechanger
    rosie118 said:..On preparing food - she said if a meal appeared in front of me, could I heat it up in the microwave.
    Which rather avoids the question of whether or not you can prepare said meal!
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • Waylay
    Waylay Member Posts: 963 Pioneering
    Hey @rosie118
    Some PIP assessors really don't understand some conditions, and many of them don't seem to understand the regulations they're supposed to be following!! 

    The question she asked about using the microwave was, basically, wrong. It's not about heating/reheating an already prepared meal, but, as you tried to describe to her, preparing and cooking one, whether on the hob or using the microwave. 

    Using your response to a fire alarm as a way to judge communication was also not correct! 

    This kind of thing happens to lots of people (a minority of claimants, yes, but a large minority). Please don't give up if this happens - that's what they hope we'll do.

    If you don't get the results that you think you are entitled to, please see if you can find help. The CAB, welfare rights, and other organisations may assist you. They can go through your claim with you and assess where you should probably have gotten points, which would give you an indication of whether an MR is a good idea for you. It sounds like you could benefit from having a representative, as autism can make it difficult to get your points across!

    The next stage would be to hand in a Mandatory Reconsideration, which you can do on paper (again, help would be great with this). If you can't find help, there's tons of advice here, pipinfo.net is really useful, and if you don't mind paying ~£20, benefitsandwork has great guides!

    You don't have to do another assessment for MR, although you may need to talk to someone on the phone.

    If that doesn't work, tribunal is the next step. Tribunals are run by the courts, NOT DWP, and are usually much more understanding! 

    Assessments suck. I'm sorry for the experience you had! It is generally much easier with help, and in my personal experience, nothing is as bad as the assessment!
  • idontlikeliving
    idontlikeliving Member Posts: 119 Courageous
    @rosie118 reading your comments has really upset me. I’m so sorry you had to go through that. I’m fed up with these “health care professionals” being like this. They don’t understand at all. They cause so much stress for people. It’s unfair how we are treated. Sending my love to you and I hope you get what you deserve sweet xx
  • rosie118
    rosie118 Member Posts: 28 Connected
    @Waylay Thanks for the reply, it's nice to know I'm not going crazy and people agree it was wrong what she said. This was the call of the back of the MR. My original assessment report was just as ridiculous. I always knew it would be hard being autistic to get through this process and for them to understand but the toll it has taken on me is intense. I will wait for her letter to come through (she said 5 days) then I guess reach out for help with the tribunal. 

    It's like she wanted me to justify why I couldn't do things but autism doesn't make sense? I said I get that it doesn't make sense that I can pass exams but can't cook for myself and make sure I eat every day but that is autism. It is being able to do some things and not others with no physical explanation. But she kept saying it was a legal thing and autism didn't fall under certain brackets and what I was saying didn't make sense to autism. 

    I'm scared to go to tribunal and face the same accusations that essentially i'm just lying and autism can't affect me like that. But at the same time I know peoples experiences of tribunals are nicer. Does anyone know if they will actually understand autism? Are they doctors? 

    @idontlikeliving thank you for the support :) 

    @calcotti yes, exactly! I said that to her. I said but that isn't what PIP is asking? It's not asking if I can heat a meal up it's asking if I can get myself food, prepare and cook it. I repeatedly said my partner manages my food, checks that i eat, cooks for me, and without it when i lived alone i went days without eating, passed out and lost weight. But she just kept saying not being able to prepare food isn't an autism thing, i shouldn't even need prompting because of autism. 

    Thanks everyone for the support. Honestly wouldn't be able to do this process without this forum. 
  • Waylay
    Waylay Member Posts: 963 Pioneering
    @rosie118 She clearly doesn't understand autism!! And "a legal thing"? Uh....

    Very occasionally one runs into an unpleasant tribunal member (there are usually 3 - a judge/lawyer, a doctor and a lay disability member (with lived experience), but my experience has overwhelmingly been that they:
    - have a far deeper understanding of most disabilities than the assessors do,
    - actually read your form, evidence and assessment thoroughly,
    - know and apply the rules more than assessors and DMs do,
    - are aware that assessments are sometimes not worth the paper they're written on, and
    - don't assume that all claimants are probably lying from the get go. Refreshing!

    That said, they move fast (lots of tribunals to do!), and tend to ask a lot of questions.  
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    rosie118 said:

    It's like she wanted me to justify why I couldn't do things
    Yes, that's exactly what you need to do. They don't need to understand Autism or any other conditions because we are all affected differently,  Remember that PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.
    One of my daughter's conditions is Autism and she claims Enhanced for both parts. What you need to do is give a couple of real world examples of what happened the last time you attempted that activity for each descriptor that applies to you. Adding information such as where you were, what exactly happened, who (if anyone) seen it and what the consequences were. Anecdotal evidence is the best you can send.
    For example, you say you can't prepare and cook a meal but can you do this with assistance? if so why is assistance needed and what happened the last time you tried to do this without assistance? If you can't cook a simple meal even without a assistance then why doesn't assistance help? You need to spell it out to them and provide those examples.
    Dressing and undressing, do you need prompting to dress? Maybe you like to wear the same clothes everyday because you have favourite things to wear. Do you need prompting and reminding that you need to change your clothes because they are dirty?  Or maybe you need assistance to choose approprate clothing for the type of weather that day? My daughter needs prompting for both of these, otherwise she would wear the same clothes 7 days a week and wear Tshirts in the middle of Winter.
  • rosie118
    rosie118 Member Posts: 28 Connected
    rosie118 said:

    It's like she wanted me to justify why I couldn't do things
    Yes, that's exactly what you need to do. They don't need to understand Autism or any other conditions because we are all affected differently,  Remember that PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.
    One of my daughter's conditions is Autism and she claims Enhanced for both parts. What you need to do is give a couple of real world examples of what happened the last time you attempted that activity for each descriptor that applies to you. Adding information such as where you were, what exactly happened, who (if anyone) seen it and what the consequences were. Anecdotal evidence is the best you can send.
    For example, you say you can't prepare and cook a meal but can you do this with assistance? if so why is assistance needed and what happened the last time you tried to do this without assistance? If you can't cook a simple meal even without a assistance then why doesn't assistance help? You need to spell it out to them and provide those examples.
    Dressing and undressing, do you need prompting to dress? Maybe you like to wear the same clothes everyday because you have favourite things to wear. Do you need prompting and reminding that you need to change your clothes because they are dirty?  Or maybe you need assistance to choose approprate clothing for the type of weather that day? My daughter needs prompting for both of these, otherwise she would wear the same clothes 7 days a week and wear Tshirts in the middle of Winter.
    Thanks for the reply and I think I'm not explaining myself very well on here. I did explain to her that I can't, and why, I said what happened last time I tried. I said I wish I could help my partner and the last time I tried I got so overwhelmed she walked back into the kitchen to me stood in the middle of the kitchen, ignoring the food and crying. I then had to go to bed and sleep off the overload. But she kept asking me why that happens to me. Like why my mind does that. I said i don't know? It's autism, i don't know why beyond that i am autistic and my mind struggles to process a lot in one go. 


  • idontlikeliving
    idontlikeliving Member Posts: 119 Courageous
    rosie118 said:
    rosie118 said:

    It's like she wanted me to justify why I couldn't do things
    Yes, that's exactly what you need to do. They don't need to understand Autism or any other conditions because we are all affected differently,  Remember that PIP isn't awarded based on any diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors.
    One of my daughter's conditions is Autism and she claims Enhanced for both parts. What you need to do is give a couple of real world examples of what happened the last time you attempted that activity for each descriptor that applies to you. Adding information such as where you were, what exactly happened, who (if anyone) seen it and what the consequences were. Anecdotal evidence is the best you can send.
    For example, you say you can't prepare and cook a meal but can you do this with assistance? if so why is assistance needed and what happened the last time you tried to do this without assistance? If you can't cook a simple meal even without a assistance then why doesn't assistance help? You need to spell it out to them and provide those examples.
    Dressing and undressing, do you need prompting to dress? Maybe you like to wear the same clothes everyday because you have favourite things to wear. Do you need prompting and reminding that you need to change your clothes because they are dirty?  Or maybe you need assistance to choose approprate clothing for the type of weather that day? My daughter needs prompting for both of these, otherwise she would wear the same clothes 7 days a week and wear Tshirts in the middle of Winter.
    Thanks for the reply and I think I'm not explaining myself very well on here. I did explain to her that I can't, and why, I said what happened last time I tried. I said I wish I could help my partner and the last time I tried I got so overwhelmed she walked back into the kitchen to me stood in the middle of the kitchen, ignoring the food and crying. I then had to go to bed and sleep off the overload. But she kept asking me why that happens to me. Like why my mind does that. I said i don't know? It's autism, i don't know why beyond that i am autistic and my mind struggles to process a lot in one go. 


    Hi Rosie. I know what you mean. I don’t think some people on here are quite grasping what you are saying. 

    I find it hard to explain things and get my point across and I don’t have autism so I can only imagine how hard it is for you. The way these HCP come across too, is so blunt so you kind of close up and forget even more how to word things. 

    Do you have anyone who you can slowly explain to someone and they can be the person who speaks for you in the future? Xx lots of love xX
  • rosie118
    rosie118 Member Posts: 28 Connected
    So after coming to the decision that I would not pursue this further I decided to try and cook tea last night. I had the day off work and figured if this woman wasn't believing me and sayign I could do it, then I'd just do it! 

    Obviously didn't exactly go well. It was just pasta and beans and I did manage to get it onto the plate finished. But then just stood, exhausted. My partner asked if I was okay. I said yeah. She asked if I was tired from cooking tea. I just stood and cried. I was mentally so drained. 

    It's not fair that PIP don't believe me when that is my reality. 

    The MR woman asked why I didn't have a GP letter backing up my 'claims'. I said I thought it didn't help to get letters from the GP/GPs won't do it. She said that's not true and it absolutely helps. 

    Is it worth me asking my GP to back up that autism will have the above outcome on trying to cook? (Or can, very aware it is a spectrum!) 

    I am now firmly in the camp of I will take to tribunal so any advice is honestly so appreciated. This whole thing is overwhelming and I hate it. But it's not fair that I am just not believed. So I do want to fight it. 

    Yet to receive MR decision letter, probably today. 
  • rosie118
    rosie118 Member Posts: 28 Connected
    @idontlikeliving thanks for the reply, apologies for not getting back to you. 

    I think I will reach out for proper help with the tribunal as I am clearly not doing a very good job at explaining myself. And I completely get what you mean. When the tone from her is hostile and accusatory (it very much felt like she was telling me I was making it up), it is even harder to think clearly. She honestly just tied me in knots. I didn't even know what I could do anymore. At one point I even said I will just agree with you so this call is done, which she seemed fine with! 

    I'm really hoping I will be able to get an advisor for a tribunal so will need to figure that out I guess. So many hurdles and things to figure out. 
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    edited October 15
    A letter from your GP telling them that Autism will have this or that affect on you will not help. PIP is not about a diagnosis, it's how those conditions affect you against the PIP descriptors.
    A GP doesn't spend any time with you to know how you manage any of the activities. They will only know something if you tell them and this isn't evidence.
    Autism is a spectrum and it affects people in very different ways. For example, my daughter has Autism (as well as other things) but for preparing a meal she does need assistance, without this it would be a complete disaster with burnt pans, uncooked and even burnt food and this is just to start with.
    She doesn't become overwhelmed in the kitchen, which is my point that not every Autistic person becomes overwhelmed in the kitchen. I'm not saying you don't so please don't think that. Telling them you can't do something because of Autism isn't going to score you any points.
    There are 9 other activities for daily living have you looked to see where you can score anymore points?
  • rosie118
    rosie118 Member Posts: 28 Connected
    A letter from your GP telling them that Autism will have this or that affect on you will not help. PIP is not about a diagnosis, it's how those conditions affect you against the PIP descriptors.
    A GP doesn't spend any time with you to know how you manage any of the activities. They will only know something if you tell them and this isn't evidence.
    Autism is a spectrum and it affects people in very different ways. For example, my daughter has Autism (as well as other things) but for preparing a meal she does need assistance, without this it would be a complete disaster with burnt pans, uncooked and even burnt food and this is just to start with.
    She doesn't become overwhelmed in the kitchen, which is my point that not every Autistic person becomes overwhelmed in the kitchen. I'm not saying you don't so please don't think that. Telling them you can't do something because of Autism isn't going to score you any points.
    There are 9 other activities for daily living have you looked to see where you can score anymore points?
    Yes I agree, that is exactly what I told the woman. I said GP letters saying 'Rosie can't do this because x y and z doesn't help with PIP'. But she spoke to me like I was stupid. Saying of course it does, that's what you need to get. 
    And of course completely appreciate every autistic person is different. But what more evidence can I give than being very specific in examples that have happened? 
    It's frustrating when I know I can't do something and I know the fair outcome is that I am awarded points for it, but she isn't willing to accept it. 
    I have been given 4 points for engaging with people, prior to the MR. Communication she says is nothing to do with autism and zero points there. 
    Medication/therapy one she said isn't relevant to tablets and counselling, only to dialysis etc. 

    Honestly think she was just making stuff up as she went, now looking back. 
    In the moment she was so sure and she kept saying 'it has to be lawful' and just kinda scared me to be honest into being scared to saying I can't do anything. 
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    If you need prompting to take your medication then this is 1 point. To score more points here then the therapy needs to take place in your own home and must be prescribed or recommended by a registered doctor, nurse, pharmacist or health professional regulated by the Health Professions Council;

    Without any of which their health is likely to deteriorate.

    May i ask if you scored any points at all for preparing food?

    My daughter has never score points for communication but i have always disagreed with that but there's never been any reason to because she's always had Enhanced for both parts.


  • rosie118
    rosie118 Member Posts: 28 Connected
    If you need prompting to take your medication then this is 1 point. To score more points here then the therapy needs to take place in your own home and must be prescribed or recommended by a registered doctor, nurse, pharmacist or health professional regulated by the Health Professions Council;

    Without any of which their health is likely to deteriorate.

    May i ask if you scored any points at all for preparing food?

    My daughter has never score points for communication but i have always disagreed with that but there's never been any reason to because she's always had Enhanced for both parts.


    I have alarms set on my phone for throughout the day (I take it three times a day). 

    I didn't score any points for preparing food in the original decision, just the four for engaging. I don't have the MR decision to know yet if she's given me any points for food. 

    I also explained in the MR letter that I can't leave the house alone but she didn't ask me anything further about that so I'm assuming they have left it at the 'Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant.' 
    Which is frustrating because I literally can't leave the house alone. There's no subjectivity or debate around that. I tried to walk around the block alone for 'walk for autism' and had to phone my brother in a panic to get home. But not sure whether to fight that at tribunal or not. Not sure why MR woman didn't ask me about that part. 


  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    So you have an award currently of Standard mobility and scored points in 1E. A claimant who satisfies 1E cannot also satisfy 1F. If they cannot undertake a single journey on the majority of days due to overwhelming psychological distress, then 1E will be the applicable descriptor, even if there are occasions when they could follow a familiar route, if accompanied.
    Can you go out with another person the majority of the time?

  • rosie118
    rosie118 Member Posts: 28 Connected
    So you have an award currently of Standard mobility and scored points in 1E. A claimant who satisfies 1E cannot also satisfy 1F. If they cannot undertake a single journey on the majority of days due to overwhelming psychological distress, then 1E will be the applicable descriptor, even if there are occasions when they could follow a familiar route, if accompanied.
    Can you go out with another person the majority of the time?

    Thankyou so much for just talking this through with me I really appreciate it. 

    I think I should be on 1F, not 1E. I very very rarely go out on my own, I'm talking like twice a year maybe and then I'm exhausted after. I always need someone with me and lean on them very much to steer me through. 

    Just yesterday I was out with my partner and went to just walk across a road when a car was coming and she had to shout stop. She asked if I was going to cross and I said yeah, I hadn't registered the car at all. I've explained all that in the forms that I'm not safe out on my own and can't handle processing everything. On the walk for autism I came across someone cutting their lawn and hit sensory overload and then can barely find my way home. 

    I very much need to be with someone who guides me through being outside. Having said that I can leave with other people. It does still tire me but nowhere near as much. 

  • rosie118
    rosie118 Member Posts: 28 Connected
    I did use to go out on my own and got public transport. I ended up losing the ability to walk through Neurological Functional Disorder. I can walk now and fought to regain it but the doctors made it clear I was pushing myself too hard and to readjust my life to fit what I can do. I was having panic attacks and sensory overload back to back. Nearly getting hit by cars etc etc. 

    Now I work from home and at the time leaned on my mum to do meals for me. Now my partner helps. 

    All the woman cared about was 'how can I be an accountant and can't cope with basic daily things'. 
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    I'm always happy to help, it's not a problem at all :) The most important question regarding the mobility part, which you haven't answered is... Are you unable to go outside the majority of the time because of overwhelming pyschological distress, even with another person?
  • rosie118
    rosie118 Member Posts: 28 Connected
    I'm always happy to help, it's not a problem at all :) The most important question regarding the mobility part, which you haven't answered is... Are you unable to go outside the majority of the time because of overwhelming pyschological distress, even with another person?
    No, I'm not unable when I have someone. Very rarely am I completely unable to leave the house. The vast majority of the time I can as long as I have someone supporting me (Partner, parent or sibling). 
  • rosie118
    rosie118 Member Posts: 28 Connected
    Just got the MR decision letter through the door. 

    Living:
    4 points for mixing with other people. 
    Mobility:
    10 for can't leave the home because of psychological distress. 

    Nothing for preparing food or taking medication. And no movement on being unable to leave the house alone. 

    Beyond frustrating. 
  • coralfang
    coralfang Member Posts: 7 Listener
    Ah i know what you mean rosie it is so frustrating trying to make them understand, sometimes you dont have the rationale for why you do or are unable to do something also, it's just how your brain is wired/how your mind is working?

     at least they have scored you points around not being able to leave the house though, i think if you went to MR you'd have a good chance of gaining additional points for the bits they didn't score you on. i actually got 0 points for not being able to leave the house with OPD purely because i am able to, occasionally, go to my mums house a few doors down in the same road, with her speaking to me beforehand/during on the phone and waiting for me at her gate/door, despite me not being able to go out alone 99% of the time (to shops or any location, i wouldn't have classed going to her house a few doors away as a proper journey?) 
  • rosie118
    rosie118 Member Posts: 28 Connected
    coralfang said:
    Ah i know what you mean rosie it is so frustrating trying to make them understand, sometimes you dont have the rationale for why you do or are unable to do something also, it's just how your brain is wired/how your mind is working?

     at least they have scored you points around not being able to leave the house though, i think if you went to MR you'd have a good chance of gaining additional points for the bits they didn't score you on. i actually got 0 points for not being able to leave the house with OPD purely because i am able to, occasionally, go to my mums house a few doors down in the same road, with her speaking to me beforehand/during on the phone and waiting for me at her gate/door, despite me not being able to go out alone 99% of the time (to shops or any location, i wouldn't have classed going to her house a few doors away as a proper journey?) 
    Thanks for the reply. It's honestly this forum that is keeping me sane through all this. 

    This was the MR decision. She has literally said that 'I said I liked playing video games so I can cook dinner'. They ask you a simple question like 'what do you like doing?' to which I panic and try to sound like I actually do something and say 'gaming'. Then they twist it. They don't ask how I cope with that or how it goes. If she did I would explain that I only game with my brother and the last time I tried I had to shut down the game because it was a new game and I got overwhelmed at learning all the new stuff. I ended up going to bed crying! Prior to that I play with him but frequently get frustrated and cry because I can't keep up or do it all because its live and you need to process so much so quickly. 
    But of course they don't give you a chance to explain. Everything in my life is done differently, and/or with support. But they don't stop to think about that. Just assume I'm happy as larry to play games all day long by myself. 

    Sorry, very frustrated at this whole thing. 
    Fed up of fighting. 
  • rosie118
    rosie118 Member Posts: 28 Connected
    The MR letter ended by saying 'we have decided you can complete this activity unaided or have the ability to learn to do so'. 

    So basically I have a degree so I'm too intelligent to be disabled by something. This system is a joke. Disabled people, including non-physical disabilities, can be smart! And still disabled! 


  • coralfang
    coralfang Member Posts: 7 Listener
    ah sorry yes my fault, i didn't see it was the MR decision sorry.

    yes they asked me the same question, i couldn't actually think of any hobbies because i don't really do anything, i feel like i've kind of lost my identity especially since covid, everything i used to enjoy doing, i don't do anymore or can't do anymore, and it sounds quite pathetic doesn't it but i was being honest with her on the phone but she put i liked to read books. i haven't read a book in ages although i have listened to a few audio books over the years as they are quite relaxing, but i didn't actually mention that to her as my mind went blank.

    its hard when they assume you can do something because you can eat with a knife/fork or hold something with grip, yes i can, but that doesn't mean i can do the task because my mental health impairs me from doing it, nothing to do with my physical body capability.

    try to keep positive, you will get there in the end. this forum has been very helpful for me even though  i don't contribute much!
  • rosie118
    rosie118 Member Posts: 28 Connected
    @coralfang Yeah i know what you mean. I haven't played games in about a year. But it's my go to kind of scripted answer to what hobbies do I have. I didn't expect it to be spun against me. 

    And that's exactly right with comparing tasks. She said if I can sit and do my job I can cook. But no I can't? I left a job that was time pressured and intense because I couldn't cope with needing to do things now. The job I have at the moment just last week I didn't get Fridays tasks done as i was struggling, so i did them Sunday. I constantly walk away from my desk and back to it so i can focus again and anything new my partner talks through with me because I struggle to process it. You can't do that with cooking! It is in the moment processing and that is what overwhelms me. 

    I guess the next step is to seek an advisor. I'm hoping they can tell me if it is worth taking to tribunal or not. I saw someone on here once say they requested it online so I'll try and find that link as that will be easier. 

  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    People do work and claim PIP but if the work you do contradicts the reasons why you're claiming PIP then it can go against you. I'm not saying this is the case for you though.
    To get further expert advice from an agency near you see this link. Put your postcode in and choose the topic "welfare benefits" https://advicelocal.uk/ if you can get representation then even better.
    One last thing, i know you said you gave real world examples of what happened the last time you attempted that activity because anecdotal evidence will be the best you can send. Make sure you haven't confused anecdotal with an assertion.
  • rosie118
    rosie118 Member Posts: 28 Connected
    @poppy123456 Thanks so much for the links I really appreciate you finding them. This whole thing is so overwhelming. 


  • lillybelle
    lillybelle Member Posts: 571 Pioneering
    Hi,
    I got really annoyed with a part of my report when it stated that I didn’t require assistance with an activity because I wasn’t mentally ill. I have mentioned this in my MR that is suppose to be looked at today.
    why do people who suffer from epilepsy have to have a mental illness. It is nothing more than an insult to their intelligence.

  • rosie118
    rosie118 Member Posts: 28 Connected
    Well I've submitted the tribunal appeal. 

    I haven't appealed the living. I honestly don't have it in me to fight it. I've just appealed the mobility decision as not only is it less points but it's wrong. I've been clear that I can leave the house but I need someone with me. I hate relying on my partner and brother but that is my life and it's not fair that this process doesn't reflect that. 

    I feel like leaving the house is more objective and easier to fight my side than them tying me in knots with food prep scenarios. And harder for them to use my job (work from home, inc pre pandemic) against me. 

    See what happens I guess. 
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    edited October 15
    rosie118 said:
    Well I've submitted the tribunal appeal. 

    I haven't appealed the living. I honestly don't have it in me to fight it. I've just appealed the mobility decision as not only is it less points but it's wrong.
    I don't understand your reasons for this. If you're appealing the mobility part and think you should have been awarded the daily living part then why not appeal both?
    Even if you're awarded 4 points for preparing a meal with assistance/supervision, rather than the full 8 points, surely you'll be entitled to points for other activies? Which could get you at least a standard daily living award but potentially Enhanced daily living.
    For example, dressing/undressing, Autistic people don't like change, they often like to wear the same clothes everyday. (my daughter does) Do you need prompting to change your clothes because you don't understand when they are dirty or you just don't realise this so continue to wear them regardless?
    Engaging with others face to face. Do you need social support from another person to be able to engage with others. This doesn't include family members that you normally engage with. If you were in a room with other people would you be able to sit there and have a conversation with them or would you just sit there and not say a word? Maybe you can't engage with others at all because it would cause overwhelming psychological distress?
    You need to fully explain why you can't do those activities and what happened the last time you attempted them. Adding information such as where you were, what exactly happened, did anyone see it and what the consequences were.
    The Tribunal are totally different to DWP and the health assessment providers. They are mostly very understanding.
    Have you put your postcode into the link i provided above to see what's local to you for expert advice and hopefully representation?
  • mikehughescq
    mikehughescq Member Posts: 7,538 Disability Gamechanger
    I’m afraid that when you appeal you are effectively appealing the whole thing and starting from a blank slate i.e. if it was a face to face hearing then you’re walking into the room with zero points. 

    In any event it is likely to actively harm your case trying to focus on one component not the other because it will be obvious to a tribunal that there ought to be points scored on daily living.
  • rosie118
    rosie118 Member Posts: 28 Connected
    @mikehughescq
    @poppy123456

    You guys are both right. It's almost like I'm autistic and got overwhelmed by the whole thing and freaked out huh. But you are right and I should stand my ground with what I know is right. I'm just tired. Like not oh i'm tired, i'm to my core just exhausted from PIP. 

    I have added further explanation to my appeal and said I was overwhelmed and just wanted to be heard on part of it atleast instead of not believed. But that I do want it reviewed in its entirety by someone that understands autism. I've given further information and explained yet again about food and various other things. Essentially just walked through my life for the last 4 years. I have nothing to hide. 

    I know autism is hard to understand. But that doesn't mean i am lying. 

    Thanks for your support. I think the 'tough love' approach here was what I needed. 
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    rosie118 said:


    I know autism is hard to understand. But that doesn't mean i am lying. 


    You're still missing the point that was trying to get accross earlier in the thread. No one needs to understand Autism or any other condition. PIP is not awarded based on any diagnosis. Autism is a huge spectrum and people are affected in so many different ways. It's your responsibility to tell them how your conditions affect you in relation to the PIP descriptors and anedotal evidence will be the best you can send.

  • rosie118
    rosie118 Member Posts: 28 Connected
    rosie118 said:


    I know autism is hard to understand. But that doesn't mean i am lying. 


    You're still missing the point that was trying to get accross earlier in the thread. No one needs to understand Autism or any other condition. PIP is not awarded based on any diagnosis. Autism is a huge spectrum and people are affected in so many different ways. It's your responsibility to tell them how your conditions affect you in relation to the PIP descriptors and anedotal evidence will be the best you can send.

    As I have said - i have done this. Over and over again. Gone into detail, given loads of examples of what happens. her response was, 'but that's not autism'. 

    She is making it about autism. She was refusing to accept my experience to be true in relation to autism. 

    I have done what you have said. In the first form, in the MR letter, on the phone. I have explained why I can't and what happens if i try. I have given real world example of trying and not being able to. 
  • poppy123456
    poppy123456 Member Posts: 23,908 Disability Gamechanger
    All of that is in the past and you need to move on now. You are at Tribunal stage and they are a lot more understanding.
  • rosie118
    rosie118 Member Posts: 28 Connected
    @poppy123456 Yeah true. I feel like i have run out of steam at the most important part. I am so demoralised and exhausted from it so far. And this is the bit where i really need to focus on getting my points across as they may actually understand. 

    Thanks for the support. 
  • mikehughescq
    mikehughescq Member Posts: 7,538 Disability Gamechanger
    Yours is a case which screams that you need competent representation. Not every case needs a rep. You do. Simple as that. 

    Your anecdotal evidence has not hit home no matter the quantity so you need to let an expert step in and do that for you. Additionally you describe being exhausted by the process and, again, why not let a rep take that weight? It’s what they’re for. 
  • rosie118
    rosie118 Member Posts: 28 Connected
    Yours is a case which screams that you need competent representation. Not every case needs a rep. You do. Simple as that. 

    Your anecdotal evidence has not hit home no matter the quantity so you need to let an expert step in and do that for you. Additionally you describe being exhausted by the process and, again, why not let a rep take that weight? It’s what they’re for. 
    I agree. I am in the process of trying to get representation. I'm not sure it aids the exhaustion because I will have to explain everything to them and communicate with them. But at least it will increase the odds that I am understood and using the 'right' language to get across my points. 

    I agree that I am clearly not doing something right thus far! Which isn't really surprising that I would struggle in communicating my points. So yes I am trying to get someone to support that.
  • mikehughescq
    mikehughescq Member Posts: 7,538 Disability Gamechanger
    Waylay said:
    Hey @rosie118
    Some PIP assessors really don't understand some conditions, and many of them don't seem to understand the regulations they're supposed to be following!! 

    The question she asked about using the microwave was, basically, wrong. It's not about heating/reheating an already prepared meal, but, as you tried to describe to her, preparing and cooking one, whether on the hob or using the microwave. 

    Using your response to a fire alarm as a way to judge communication was also not correct! 

    This kind of thing happens to lots of people (a minority of claimants, yes, but a large minority). Please don't give up if this happens - that's what they hope we'll do.

    Worth pointing out that most PIP assessors don’t understand most conditions but then I’ve never met any medical professional who does and that’s not what they’re to do. They certainly wouldn’t understand the regulations as neither APs/HCPs nor DWP staff are trained using the regulations. They are trained using the relevant guidance and nowadays said guidance is semi-competent and often politicised. Not the fault of the APs. 

    It is incorrect to say the microwave question is about preparing food. The exact siding is 

    “Cannot cook a simple meal using a conventional cooker but is able to do so using a microwave.”

    There is no element of preparation required to score those 2 points.

    Similarly, response to a fire alarm is entirely relevant to several descriptors and that would include communication. 

    It’s also unfair to use pejorative phrases like “that’s what they hope we’ll do”. There’s no evidence base for that and, having come across DWP staff over 4 decades in their various guises I may disagree with many of their decisions and processes and culture but the intent behind that is almost never malevolent.

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.