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What to do about PIP
- Abeluna
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4 years 2 months ago #256133 by Abeluna
What to do about PIP was created by Abeluna
I struggle a bit with reading certain things and making sense of them, and I couldn't find a search button for the forum, so sorry if this has been asked a million times before.
I am a 30ish female with ADHD and suspected ASD. I have also been diagnosed with depression. My condition keeps getting worse, but I'm getting no support as I seem to not manage to convince people that I am actually ill. I tried applying for PIP a couple of years ago, and the whole process was stressful and endlessly humiliating. I didn't manage to fill in the form and didn't get help on time, but was invited for an assessment regardless. I did get someone to go over my situation with me (an advocate), but the assessment was too short notice for them to accompany me.
During the assessment I was treated with quite a bit of hostility, and at some point the assessor made me cry and then told me not to get so emotional, right after asking me an emotional question.
The report which followed was littered with inaccuracies. The most distressful part was that throughout the report, the assessor (who was a physiotherapist), had written that ADHD isn't a disability. Not just once, but multiple times. It was so upsetting to read. Further a lot of assumptions were made about things I could do in theory, such as eat and prepare meals, or budget and understand instructions.
The report also claimed that I had no business saying I had mobility issues as I could walk fine entering the room. I had at no point suggested I had any issues walking at all! When asked whether I could walk X amount of distance unaided and move around unaided I'd clearly answered yes, but the report made it out as if I'd said I struggle walking. I feel that was put in there to make me look like a liar, but I don't know whether I am being paranoid. I was so distressed by it all that I gave up on the spot and never went for reconsideration.
Now I feel a little stronger and went to try again. I actually filled in the form this time and they acknowledged receipt around Christmas. Could I ask how long it usually take from that point to hear anything from them?
Also, I struggle talking to people about my health and expressing how it affects me. I am at the GP more than once a month now, but they don't seem to hear me when I say anything, so I'm going through a complaints process. I have a psychiatrist, but I don't feel comfortable talking to them and so they too underestimate my difficulties. It means I don't know who to ask for additional evidence, and it is making me feel like this is a hopeless venture. I sometimes don't even believe myself anymore that I have a disability. I work but cannot do anything else much, both due to my condition and due to depression. Has anyone been in this situation and managed to claim successfully? Am I a fraud? I am losing confidence and don't know who else to ask.
I am a 30ish female with ADHD and suspected ASD. I have also been diagnosed with depression. My condition keeps getting worse, but I'm getting no support as I seem to not manage to convince people that I am actually ill. I tried applying for PIP a couple of years ago, and the whole process was stressful and endlessly humiliating. I didn't manage to fill in the form and didn't get help on time, but was invited for an assessment regardless. I did get someone to go over my situation with me (an advocate), but the assessment was too short notice for them to accompany me.
During the assessment I was treated with quite a bit of hostility, and at some point the assessor made me cry and then told me not to get so emotional, right after asking me an emotional question.
The report which followed was littered with inaccuracies. The most distressful part was that throughout the report, the assessor (who was a physiotherapist), had written that ADHD isn't a disability. Not just once, but multiple times. It was so upsetting to read. Further a lot of assumptions were made about things I could do in theory, such as eat and prepare meals, or budget and understand instructions.
The report also claimed that I had no business saying I had mobility issues as I could walk fine entering the room. I had at no point suggested I had any issues walking at all! When asked whether I could walk X amount of distance unaided and move around unaided I'd clearly answered yes, but the report made it out as if I'd said I struggle walking. I feel that was put in there to make me look like a liar, but I don't know whether I am being paranoid. I was so distressed by it all that I gave up on the spot and never went for reconsideration.
Now I feel a little stronger and went to try again. I actually filled in the form this time and they acknowledged receipt around Christmas. Could I ask how long it usually take from that point to hear anything from them?
Also, I struggle talking to people about my health and expressing how it affects me. I am at the GP more than once a month now, but they don't seem to hear me when I say anything, so I'm going through a complaints process. I have a psychiatrist, but I don't feel comfortable talking to them and so they too underestimate my difficulties. It means I don't know who to ask for additional evidence, and it is making me feel like this is a hopeless venture. I sometimes don't even believe myself anymore that I have a disability. I work but cannot do anything else much, both due to my condition and due to depression. Has anyone been in this situation and managed to claim successfully? Am I a fraud? I am losing confidence and don't know who else to ask.
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- Catherine
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4 years 2 months ago #256137 by Catherine
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Replied by Catherine on topic What to do about PIP
Hello Abeluna,
As I read your post I became more and more emotional. Your story of woe with regards applying for PIP is so familiar to me, and it always feels so wrong that people should be forced through that. I am sorry to hear that you have been caught in the net of misery.
Well done for being ready to step up and have another go, and I hope this time it is less painful for you.
The more supporting evidence you are able to get the better your chances, and greater your chances of getting your award sooner in the process. But I hear what you say about finding it hard to talk about your health. Can I suggest that you try to complete one of the diaries in your PIP section. You have to scroll down a little bit to find them.
www.benefitsandwork.co.uk/help-for-claimants
When you have done this, you can include it as evidence of how your health affects you. I know you have already submitted your form, but you can still submit additional evidence, just do it as soon as you can. (And keep a copy for yourself.)
Remember too that psychiatrists are used to people taking a long time to open up them. The very fact that you have been referred to one carries weight, so if you can bring yourself to do so I would ask your psych for a supporting letter, you might be surprised how helpful it is. Of course if you don't agree with what is written, you don't have to submit it!
I hear what you say about finding it hard to talk about your health and how it affects you. But unfortunately that is part of the PIP process. If the DWP are not told about something they cannot be expected to take it into consideration. Hopefully you have found someone who will at the least be your PIP buddy through this process. Someone who you trust and can be with you when you have your assessment (covid permitting), and someone who will reassure you of your own sanity and self-worth. Even when everything goes well I think the whole process is destructive and nobody should have to do it alone. (A personal hobby horse.) If you can find someone who is experienced in the area, and whom you feel safe with, this is even better.
To try to answer your questions, the time scales are all over the place at the moment, and I would hate to guess when you might hear about your assessment. When you do get it, if you need to rearrange it remember you have that right. We also strongly suggest that you record it, this can be helpful if you are not happy with the way it went, or the way your were treated.
Same link as above
www.benefitsandwork.co.uk/help-for-claimants
but this time the first option - 'guide to pip claims and reviews'. There is now a section in there about telephone assessments.
Do people like you succeed in getting PIP. The answer is yes, but I have to say that for too many people it is not always won at the first stage. But come back to us again if you need advice if you don't succeed in the first round.
Are you a fraud. Well nothing you have written has even suggested that to me.
PIP is about the help that you reasonably need, not the help that they get. You sound like someone who is independent and determined. Someone who will find a way to cope on their own. This does not mean that do not reasonably need help with some activities.
I hope that one day you will post telling us of your success at the assessment, but if that is not the case, please do come back to us.
Catherine
As I read your post I became more and more emotional. Your story of woe with regards applying for PIP is so familiar to me, and it always feels so wrong that people should be forced through that. I am sorry to hear that you have been caught in the net of misery.
Well done for being ready to step up and have another go, and I hope this time it is less painful for you.
The more supporting evidence you are able to get the better your chances, and greater your chances of getting your award sooner in the process. But I hear what you say about finding it hard to talk about your health. Can I suggest that you try to complete one of the diaries in your PIP section. You have to scroll down a little bit to find them.
www.benefitsandwork.co.uk/help-for-claimants
When you have done this, you can include it as evidence of how your health affects you. I know you have already submitted your form, but you can still submit additional evidence, just do it as soon as you can. (And keep a copy for yourself.)
Remember too that psychiatrists are used to people taking a long time to open up them. The very fact that you have been referred to one carries weight, so if you can bring yourself to do so I would ask your psych for a supporting letter, you might be surprised how helpful it is. Of course if you don't agree with what is written, you don't have to submit it!
I hear what you say about finding it hard to talk about your health and how it affects you. But unfortunately that is part of the PIP process. If the DWP are not told about something they cannot be expected to take it into consideration. Hopefully you have found someone who will at the least be your PIP buddy through this process. Someone who you trust and can be with you when you have your assessment (covid permitting), and someone who will reassure you of your own sanity and self-worth. Even when everything goes well I think the whole process is destructive and nobody should have to do it alone. (A personal hobby horse.) If you can find someone who is experienced in the area, and whom you feel safe with, this is even better.
To try to answer your questions, the time scales are all over the place at the moment, and I would hate to guess when you might hear about your assessment. When you do get it, if you need to rearrange it remember you have that right. We also strongly suggest that you record it, this can be helpful if you are not happy with the way it went, or the way your were treated.
Same link as above
www.benefitsandwork.co.uk/help-for-claimants
but this time the first option - 'guide to pip claims and reviews'. There is now a section in there about telephone assessments.
Do people like you succeed in getting PIP. The answer is yes, but I have to say that for too many people it is not always won at the first stage. But come back to us again if you need advice if you don't succeed in the first round.
Are you a fraud. Well nothing you have written has even suggested that to me.
PIP is about the help that you reasonably need, not the help that they get. You sound like someone who is independent and determined. Someone who will find a way to cope on their own. This does not mean that do not reasonably need help with some activities.
I hope that one day you will post telling us of your success at the assessment, but if that is not the case, please do come back to us.
Catherine
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4 years 2 months ago #256160 by denby
Replied by denby on topic What to do about PIP
Dear Abeluna. 1] you are definitely NOT a fraud, it is the DWP's policy IMHO to try to make people feel this way. With ASD you are very vulnerable, my husband took till 68 to get his Asperger's diagnosis and getting your diagnosis is sooo hard. Catherine's suggestion to do a diary is really worth trying, they do seem to take account of these with our daughter's claims.
I just wanted to add in case you weren't on here later, as soon as two days pass from the assessment when you get it, please phone up DWP to ask for the assessment report. Unless in N. Ireland you have the right to have a copy.
When you get it go through with a highlighter marking up anything you do not agree with. Then write in ASAP to debunk anything that needs it, coldly referencing the relevant docs for each item [and other info eg NHS website if needed]. This might save you masses of trouble if the Decision Maker sees that the assessor has not given a fair report. Did this for our daughter last year and it was the first time in 3 we did not have to fight to get top award. Very best wishes, Denby
I just wanted to add in case you weren't on here later, as soon as two days pass from the assessment when you get it, please phone up DWP to ask for the assessment report. Unless in N. Ireland you have the right to have a copy.
When you get it go through with a highlighter marking up anything you do not agree with. Then write in ASAP to debunk anything that needs it, coldly referencing the relevant docs for each item [and other info eg NHS website if needed]. This might save you masses of trouble if the Decision Maker sees that the assessor has not given a fair report. Did this for our daughter last year and it was the first time in 3 we did not have to fight to get top award. Very best wishes, Denby
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- Abeluna
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4 years 2 months ago #256181 by Abeluna
Replied by Abeluna on topic What to do about PIP
Thank you Catherine and Denny for your replies. It is heartening to hear that I am not making it all up, because I am starting to question my own sanity regarding whether or not I have a disability that makes me struggle in my daily life.
You are right Catherine in that I am fiercely independent in a way. I spent and still spend the majority of my life frustrated and baffled by stuff I cannot seem to do, despite being able to walk and talk and look like any other healthy human being. I tried living on my own once, and whilst I didn't die, I wasn't able to pull it off successfully either. I just hadn't quite noticed just how much I struggle with things.
I'm thinking about it in my head, and the last time I 'cooked' was last week, when my husband was there with me. He works away from the home every day and I either don't eat until he gets back, or I order something I can grab at the door. Whether there is food in the house doesn't come into it. Yesterday my husband said I should have a shower, which made me realise I haven't showered since last Saturday. I just really struggle vocalising these things without it apparently sounding as if I just cannot be bothered. When I said that I struggle to talk about my health, I also mean that I seem to struggle to make people understand, rather than me not wanting to talk. I don't know where I keep going wrong,nor whether I am just unlucky in my dealings with healthcare.
I haven't officially been diagnosed with ASD, but I am waiting for an assessment. I do however have an ADHD diagnosis and take medication for that condition. I took medication for depression for a while, but I do not at the moment because I had side effects previously that made me afraid of trying again. I keep getting into trouble financially because I forget to pay for things or feel major anxiety about dealing with my own admin, but because my husband and I are financially secure it is not something that lands me into dire straits. I've had multiple court summons against me over the years though, all for debts I was able to pay theoretically (as in I've had the money). My financial situation also makes me feel I have no business claiming. I'm not rich, but I'm definitely not poor either, so I feel I have no business taking public money. At the same time I feel this sense of unfairness of having to fork so much of my own money to be able to live a half-decent life, because the NHS doesn't want to know. I also thinks that counts against me and any argument about me struggling with comprehension or budgeting in any way gets immediately dismissed as I'm an eloquent and university educated person with a 'good job' (not in finance). I really struggle with work too, but again, that is overlooked.
Sorry if I am writing such long messages. This is actually helpful for me because I can think like this, but I can't do it when I'm in person talking to someone very well. I've tried getting someone to help me, but I can't convince people very well that I need help at all, and I don't know exactly what I'm asking. I just end up sad and confused.
I will try the diary idea. If there is a clear template I can follow that might work, because I am really bad when there aren't very defined parameters. I also don't always understand what someone is wanting me to answer when they ask a question, but I've become afraid of voicing this as it is usually met with some amount of ridicule. I'll keep waiting then to see if they call me. I can't even remember now how I filled in the form, and I'm having a mild panic of maybe not even having gotten to 8 points in my self-assessment.
My previous report says things such as I was fine and not trembling of sweating excessively, so I can't have been anxious or distressed. I was extremely distressed, cried all the way back home and had to take two days off work to get back to normal, but I tend to tense up in public rather than shake or tremble so I am not distressed in the right way.
It also says that because I have X job, I can't possibly have issues with distractibility and concentration and therefore I can take my medication unaided. Yet I constantly need to be reminded, forget or feel uncomfortable taking medication, but how do I possibly counter that? I'm flicking through the report and my job is almost constantly mentioned as a counter to anything I've said. It feels almost as if I'm being punished for trying to lead a semblance of a normal life, even though I've now kind of reached the end of what I can manage. But perhaps they are right and I am being ridiculous. It's just hard to know when you are reading a report that is basically 30 pages of telling you that you are a liar. I was feeling ok about it yesterday, but now that I've re-read the report I am not so sure. Sorry about all of the talking.
You are right Catherine in that I am fiercely independent in a way. I spent and still spend the majority of my life frustrated and baffled by stuff I cannot seem to do, despite being able to walk and talk and look like any other healthy human being. I tried living on my own once, and whilst I didn't die, I wasn't able to pull it off successfully either. I just hadn't quite noticed just how much I struggle with things.
I'm thinking about it in my head, and the last time I 'cooked' was last week, when my husband was there with me. He works away from the home every day and I either don't eat until he gets back, or I order something I can grab at the door. Whether there is food in the house doesn't come into it. Yesterday my husband said I should have a shower, which made me realise I haven't showered since last Saturday. I just really struggle vocalising these things without it apparently sounding as if I just cannot be bothered. When I said that I struggle to talk about my health, I also mean that I seem to struggle to make people understand, rather than me not wanting to talk. I don't know where I keep going wrong,nor whether I am just unlucky in my dealings with healthcare.
I haven't officially been diagnosed with ASD, but I am waiting for an assessment. I do however have an ADHD diagnosis and take medication for that condition. I took medication for depression for a while, but I do not at the moment because I had side effects previously that made me afraid of trying again. I keep getting into trouble financially because I forget to pay for things or feel major anxiety about dealing with my own admin, but because my husband and I are financially secure it is not something that lands me into dire straits. I've had multiple court summons against me over the years though, all for debts I was able to pay theoretically (as in I've had the money). My financial situation also makes me feel I have no business claiming. I'm not rich, but I'm definitely not poor either, so I feel I have no business taking public money. At the same time I feel this sense of unfairness of having to fork so much of my own money to be able to live a half-decent life, because the NHS doesn't want to know. I also thinks that counts against me and any argument about me struggling with comprehension or budgeting in any way gets immediately dismissed as I'm an eloquent and university educated person with a 'good job' (not in finance). I really struggle with work too, but again, that is overlooked.
Sorry if I am writing such long messages. This is actually helpful for me because I can think like this, but I can't do it when I'm in person talking to someone very well. I've tried getting someone to help me, but I can't convince people very well that I need help at all, and I don't know exactly what I'm asking. I just end up sad and confused.
I will try the diary idea. If there is a clear template I can follow that might work, because I am really bad when there aren't very defined parameters. I also don't always understand what someone is wanting me to answer when they ask a question, but I've become afraid of voicing this as it is usually met with some amount of ridicule. I'll keep waiting then to see if they call me. I can't even remember now how I filled in the form, and I'm having a mild panic of maybe not even having gotten to 8 points in my self-assessment.
My previous report says things such as I was fine and not trembling of sweating excessively, so I can't have been anxious or distressed. I was extremely distressed, cried all the way back home and had to take two days off work to get back to normal, but I tend to tense up in public rather than shake or tremble so I am not distressed in the right way.
It also says that because I have X job, I can't possibly have issues with distractibility and concentration and therefore I can take my medication unaided. Yet I constantly need to be reminded, forget or feel uncomfortable taking medication, but how do I possibly counter that? I'm flicking through the report and my job is almost constantly mentioned as a counter to anything I've said. It feels almost as if I'm being punished for trying to lead a semblance of a normal life, even though I've now kind of reached the end of what I can manage. But perhaps they are right and I am being ridiculous. It's just hard to know when you are reading a report that is basically 30 pages of telling you that you are a liar. I was feeling ok about it yesterday, but now that I've re-read the report I am not so sure. Sorry about all of the talking.
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- BIS
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4 years 2 months ago #256185 by BIS
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Replied by BIS on topic What to do about PIP
Hi Abeluna
You sound like you had a simply awful last assessment. Unfortunately, you're not alone in having that type of experience. The assessor was offering their 'opinion' - nothing more. Don't let that make you start to doubt yourself. You are your own expert and there is no one who knows you better than you!
You are always going to be facing a double whammy when applying for PIP - 1. Your ADHD makes it difficult to explain and express what is happening to you and 2. You're likely to have an assessor who has little knowledge of the condition and its implications (which is why they held the fact that you work against you).
It is not too late to send in more information, but as Catherine said, you need to be quick.
If your husband has not already written a letter he should do so - saying what he has seen and observed. If he runs through each of the PIP questions (because that's the criteria you are trying to meet) - he can give his view of your difficulties.
I can understand why you feel punished for trying to make an effort to work and that's where it shows they have no understanding of ADHD (and they probably have little knowledge of ASD). Assessors are notorious for assuming that high functioning people like yourself struggle with the symptoms of their condition/s. I don't know whether you have told anyone at work, or whether work has made any reasonable adjustments for you - if they have done so - you should include a letter from them (if they're willing to write one or you don't mind asking for one).
I would do as Catherine said and get a letter from the Psychiatrist or GP if you can (even though you're not comfortable with it). I have found they can be helpful if you present them with a letter already written and ask them if they could write something similar. You won't get near a psychiatrist at the moment but they will have a secretary.
I think you possibly have another potential difficulty coming up. You will probably be asked to take part in a telephone assessment. If it's possible you need someone on that call with you, like your husband. You also need to look at our advice in the Guide to PIP Claims and Reviews. There are ten pages on telephone assessments. You would be wise to read it and go through the possible questions and be as prepared as you can. It's very easy to get caught out on what appears to be a tricky question. (The assessors do it to everyone). And if you do have a telephone assessment - tell them at the very start - you cannot answer questions quickly. That should give you a bit more space to answer.
www.benefitsandwork.co.uk/help-for-claimants
BIS
You sound like you had a simply awful last assessment. Unfortunately, you're not alone in having that type of experience. The assessor was offering their 'opinion' - nothing more. Don't let that make you start to doubt yourself. You are your own expert and there is no one who knows you better than you!
You are always going to be facing a double whammy when applying for PIP - 1. Your ADHD makes it difficult to explain and express what is happening to you and 2. You're likely to have an assessor who has little knowledge of the condition and its implications (which is why they held the fact that you work against you).
It is not too late to send in more information, but as Catherine said, you need to be quick.
If your husband has not already written a letter he should do so - saying what he has seen and observed. If he runs through each of the PIP questions (because that's the criteria you are trying to meet) - he can give his view of your difficulties.
I can understand why you feel punished for trying to make an effort to work and that's where it shows they have no understanding of ADHD (and they probably have little knowledge of ASD). Assessors are notorious for assuming that high functioning people like yourself struggle with the symptoms of their condition/s. I don't know whether you have told anyone at work, or whether work has made any reasonable adjustments for you - if they have done so - you should include a letter from them (if they're willing to write one or you don't mind asking for one).
I would do as Catherine said and get a letter from the Psychiatrist or GP if you can (even though you're not comfortable with it). I have found they can be helpful if you present them with a letter already written and ask them if they could write something similar. You won't get near a psychiatrist at the moment but they will have a secretary.
I think you possibly have another potential difficulty coming up. You will probably be asked to take part in a telephone assessment. If it's possible you need someone on that call with you, like your husband. You also need to look at our advice in the Guide to PIP Claims and Reviews. There are ten pages on telephone assessments. You would be wise to read it and go through the possible questions and be as prepared as you can. It's very easy to get caught out on what appears to be a tricky question. (The assessors do it to everyone). And if you do have a telephone assessment - tell them at the very start - you cannot answer questions quickly. That should give you a bit more space to answer.
www.benefitsandwork.co.uk/help-for-claimants
BIS
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4 years 2 months ago #256263 by Catherine
Please Abeluna just keep remembering that nobody knows the truth about your difficulties as well as you do. The assessor's report is at best only their opinion of your difficulties, based on limited information, and possibly a limited perspective. Use that determination of yours to show them what the truth is you experience it.
Catherine
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Replied by Catherine on topic What to do about PIP
Abeluna wrote: But perhaps they are right and I am being ridiculous. It's just hard to know when you are reading a report that is basically 30 pages of telling you that you are a liar. I was feeling ok about it yesterday, but now that I've re-read the report I am not so sure.
Please Abeluna just keep remembering that nobody knows the truth about your difficulties as well as you do. The assessor's report is at best only their opinion of your difficulties, based on limited information, and possibly a limited perspective. Use that determination of yours to show them what the truth is you experience it.
Catherine
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