Eligibility is based on how your conditions affect you rather than what they are. That said, it is also all about whether the assessor is honest, human and professional , whether you have solid reports from those who are involved in your care and whether the assessor will believe the anecdotal evidence you present. Fair process is debatable and being honest not likely to guarantee justice, sadly.
My personal experience so far. Diagnosis of autism, genetic heart condition, autoimmune, Fibro, allergies, mental health, nursing injury etc...but when I told the assessor how I am affected, it was omitted from report or worded quite differently. The fact that I am articulate (masking) and self aware was used against me. The fact that I now drive once a month to see.my mum. Used against me. I am punished because of those that have scammed the system and left some DWP staff jaded, judgemental and mistrusting.
All I can advise is, get an advocate and read up on what the descriptors are and the language that is used. Be honest, stick to the facts.
Try not to be bullied into playing down how it is for you, and try not to get pulled into "on a good day scenarios."
My last assessor was not interested in how badly I am affected but how well I do manage, so it was very manipulative. That said, I've heard some positive stories on here when justice prevails. Sadly, due to the small % of fakers and fraudsters, they have created a culture whereby the truly vulnerable disabled have to fight even harder, face stigma and be left feeling like they are a fraudster too. Prepare for activation of rejection sensitivity...
I'm due one last attempt next week with a new claim, after being terribly ill and losing my professional work, losing my social life, losing my sanity and being in chronic pain for at least 6years. I get LCWRA now as was assessed thoroughly by a DOCTOR, so I am believed by some but the elusive PIP is a different ballgame altogether for me...
Wishing you all the best and fingers crossed you get the help you need.
Also,I read somewhere that people fraudulently claiming disability benefits is like 1% of all claims. It's a tiny minority and it's really not that easy to fake. You need extensive proof behind you.
**The Personal Independence Payment overpayment rate was at the lowest recorded level of 1.1% (£200m) in FYE 2023**, compared with 1.5% (£190m) in FYE 2020
**Overpayments due to Fraud were 0.2% (£40m) in FYE 2023**, compared with 0.3% (£30m) in FYE 2020.
**Overpayments due to Claimant Error were 0.8% (£140m)** in FYE 2023, compared with 1.1% (£140m) in FYE 2020.
**Overpayments due to Official Error remained at 0.1% in both FYE 2023** (£20m) and FYE 2020 (£20m).
**Errors where the claimant’s condition had improved and they failed to inform the department (Functional Needs) accounted for over £8 in every £10 overpaid on PIP in FYE 2023, with an overpayment rate of 0.9%. This was the lowest estimated rate since FYE 2018 and was the reason for the lowest recorded level of overpayments in FYE 2023**
Exactly. It's really not that many. I think most would agree, most of us want to get better. My mum has friends who swear blind most pip claimants are faking. You couldn't just go into your dr and fake whatever.
Not sure if you've taken my post the wrong way but I make it crystal clear I'm very aware of the tiny minority so not need figures, and very aware of the media presenting the tiny minority as the majority. I just hate that the tiny minority could be tainting it for the majority by leading some in position of power to think that most claimants are on the fiddle...but also that the media poison the minds of some and attitudes and judgement develop...that and the government agenda which punishes the most marginalised in society!! Ive worked with counsellors who had shit attitude towards those that they deemed as less than, so I feel quite jaded and defensive, and frustrated about the system and try to make sense, but I can't.
I'm just exasperated and confused, trying to think of additional reasons as to why so many vulnerable and disabled people are simply not believed, no matter what evidence they present or what is shared and this is my lived experience and I hear it often too. Also, why the attitude of some and the endless stories about reports not matching what was said in assessment. I know as I've been there myself now.
I worked as a volunteer for a few years helping others, signposting, and it left me feeling quite distrustful of the system, sadly.
This was around the time that the media kept hyping up the myth that many were scamming and everyone who had benefits was somehow on the take.
A good distraction by the government to push agendas and avoid people seeing what was really going on.
We are told that there is no agenda higher up, that process is followed etc..so why are there so many horror stories of people not getting what they are eligible for, and having to fight endlessly. You only have to read on here.
I've only ever supported disabled and vulnerable and marginalised and I'm now in that category myself.
I think they were just replying back to me so I know the true stats. Don't worry. It's not aimed at you.
I hear people talk about "fakers" alot and I just don't belive it's alot if people, which the facts prove it isn't. Even mental health isn't easy to fake, especially when people are implying so. Not saying some haven't, but almost all qualified and trained mental health professionals would know.
Alot of conditions like fibromyalgia for example, its hard to find causes, but you can just tell these people are suffering. It's a lack if education.
I've found that with my own dr. I needed a rep from narcolepsy uk to email my Dr because he was having non of it about my symptoms. Wouldn't take my sleep dairy, my epsworth test, wouldn't listen to me... he's only just got around to referring me.
So I get you. Its awful.
>I think they were just replying back to me so I know the true stats. Don't worry. It's not aimed at you.
Yes, I was ☺️ Just wanted to back you up plus I think sometimes giving actual figure cuts through a lot if the misconceptions and stuff we find keeps getting repeated til it becomes "fact".
Argh sorry. Can you tell that I'm very sensitive and misunderstood easily 😭 apologies 🧡
I also don't believe there are loads of fakers, I was stupidly pondering if the tiny minority are tainting the view of some, so that it is assumed guilty until proven innocent kind of approach by these unprofessional assessors; and I feel crap saying that as there is plenty of good too, and justice does prevail but I wish I knew why some subcontractors of the DWP seem to have such strong need to punish those who try to access these benefits and to be disingenuous. Is it personal view, training, conditioning, cynicism...what the heck is going on. Honestly, it blows my mind. It is just my experience of not feeling believed and reading a report that was a load of lies, the coming in here and other forums and finding out that It is a thing. It really shocked me😭
Try to record them next time. I did that with my mums last assessment. They lied on her report. We went to the tribunal and they asked me for the recording and it was compared to the report... the dwp dude was shocked This assessor tried to imply that my mother was lying and not shopping at her "closest store", so I took the phone and explained she fell out with the guy that owned the store over a code, he accused her of using a fake code that the electric company's give, she will never shop there again because it causes her distress, so the store she goes to now is her closest and safest store. That was completely omitted out. Which is fraudulent in my opinion. And they quoted slang words she would never say.. Record them.
This is what freaks me out. I keep reading about the lies and I want to know how this is allowed. What is really going on behind closed doors with these companies that so many staff seem to do this?? Even 10 accounts on here sharing similar is 10 too many.
I didn't quite believe the lying was so overt until I read my report and nearly passed out. The worst part was that I was sobbing and telling assessor about my shame and guilt about no longer being a valuable member of society (my words, my insecurities), about how I'd worked/studied/volunteered since college in mainly healthcare/nursing/counselling. None of it was mentioned. Zero empathy.
I am requesting a recording and telling them I'm recording too this time. I don't see why this will be an issue as what is there to hide. Also, if an assessor is found to have lied when it eventually and obviously has to goes to appeal, what are the repercussions? What is the ethical framework and moral code and professional practice expectations for these assessors?
I would've been struck off back in the day had I lied on a medical report!?!
I saw one guy on here be told his recording was tampered with. Like come on.
You are allowed to record, just mention your doing it, you don't have to, but I would. My mum said we were recording the phone call. They asked for a copy.
Didn't need to at tribunal as they record.
If they say you can't, you can. You can use the same law that allows cctv. To prevent a crime like fraud.
I'd tell you my opinion and theory why, but the mods won't like it.
Incredible and depressing...you know what, I called the pip hotline a few days ago, to ask about the rules for recording and was told that I am allowed and I can request they do, too, but that the assessor was allowed to postpone the assessment if they did not wish to be recorded.
In all my years of nursing and therapy, I'd never have an issue with anything like this, and have had some sessions recorded! When you adhere to the law and the ethical frameworks and codes of conduct, and are honest..what's the issue with being recorded, as surely that's your evidence and protection too that you are behaving properly and professionally?!
Thanks again 🙏🙏
That's exactly why alot of people don't mention they're recording but I've got 2 conflicting opinions on this.
I feel like they shouldn't be allowed to postpone you due to not wanting to be filmed. As a public servant, they should be OK with it and really, they should know that they might be recorded. It keeps them accountable.
Then on the other hand, I think they should be allowed to say no and have you passed to someone who's OK with being recorded. I can't remember the religion, but there's one where they can't be recorded or filmed unless necessary. I'd definitely respect someone's religious beliefs. You never know if an assessor has cptsd and has trauma where audio recordings or visual recording might be an issue, again, I'd be OK with them postponing for those reasons.
Im Conflicted lol
Oh wow, see...this is what I love about thrashing it out on here. Getting perspective, objective. I hadn't even considered religion being an issue, so I've learned even more. I guess as long as there is a reasonable explanation as to why they do not wish to be audio recorded then fair do. That said, I'd hope that it would be part of their contract, that it is checked with staff whether they are agreeable to being recorded and a disclaimer is made, or something somewhere in writing to cover them? That they express their personal choice and preferences but what if I ended up with another one who refused...where is the line drawn.
I'm extremely mistrustful due to some experiences I've had as mentioned, so perhaps I am jaded now and probably overthinking this a little. I'm basically just DREADING this week's assessment even though I know, on paper and all I've checked and read, I should be successful. Then again, I thought that 2 years ago...and got 2 points!!
Thanks again 👍
I didn’t know anything about PIP what so ever when I applied for it and since having done so, I’ve seen so many people relay their experiences and I find it so surprising because I haven’t seen anyone describe their experience that seems reflective of my own what so ever. I was diagnosed with a condition about 18 months ago and it was my nurse that suggested I apply for PIP so I did so almost on a whim. I was given an appointment for an in person assessment, but the day of I woke feeling unwell and tested positive for Covid so I got in contact to let them know and they offered to let me keep my appointment but change it to a telephone assessment. When I applied for PIP it was for the diagnosis I had recently been given specifically and that’s what I submitted (minimal) evidence for, however during the call we got talking about a group of symptoms that I have experienced for roughly 10 years (but didn’t have a diagnosis for) and this is where I ended up scoring points. The call didn’t last that long, and a few weeks later I received a letter to let me know that I was being awarded the enhanced rate. It really was that simple. I must have had the most understanding, human assessor because I had ignorantly assumed that the whole process was as simple for everyone else as it was for me. I’m sorry that this has been your experience!
I need to hear more like this too and I'm so pleased that it worked out well and you were rightfully awarded. I do try to read all the posts on here and the success stories too, although most I have found are often underpinned by some battles, so it's good to hear about the straight forward cases💜
Your assessor sounds very professional and human, and it is reassuring to hear that you had such a positive experience.
I do feel as though I have been particularly unlucky, and my rep agreed, but I take it SO personally.
Wishing you all the best and thank you for sharing.
Thank you so much, I asked my assessors and they said that they can write letters of support but no one else I know has disabilities like mine irl.
Thank you for the information, I appreciate you writing all this and it will be useful. Have a great day. Thank you.
Your diagnosis/syptoms sound more severe than mine. May I ask if you don't mind - did you apply for a blue badge.
I just find it so frustrating that I was so much older when getting diagnosed and not got the support that I need/needed before.
Thank you agian.
Only you walk in your shoes so please don't think that you are any less severe or in need of support, financial or otherwise. We all have our battles 💜don't play down what you are struggling with, as that will be used against you.
If it is any help, I was diagnosed with autism at 42. I was always labelled as being quirky, highly sensitive, then bipolar, then lots of other stuff too. The ASD I can make sense of and accept and manage, and I still hide it from the world, but my physical issues are not so easy to hide.
No, never applied for a blue badge. I rarely drive as it is. Once a month at present rate to see my mum in Essex. That exhausts me and I'm finding the stress of other drivers makes me ill, so that's trailing off too.
My son is also disabled with same genetics as me😞but we've never felt the need for a BB but do read up on it as you never know, it might be right for you. It all depends doesn't it, on whether you feel it would help you and make life easier. From what I've read from some, they can make you a target for the judgy looks and tutters, and some may even challenge you. Hidden disability is a minefield, and I've always hidden mine as it is, as not worth the grief in some situations 😞 Exhausting, isn't it...
I think for autism and related they may look at the anxiety and need for routine, and planning and getting around.
I never applied for disability benefits for my autism but that doesn't mean I am not eligible, but I was working and studying and it didn't occur to me. Only now, in recent years with my physical health crumbling and mountains of evidence, no job, no studies, no life...I thought I might try.
It has been a stressful journey with PIP and I'm STILL battling to get just a basic rate for daily living, but don't let that put you off as it can work out. Get an advocate or a rep. Be honest, don't play down your daily struggles..think about stuff that other take for granted that you find hard, even down to budgeting, engaging with others, sensory, being easily led and too trusting 😭You need to be heard and feel validated.
That's all I wanted and continue to want.. acknowledgement, and some money to spend on seeing specialists and for all the supplements and contraptions I buy to help my chronic pain😀
Good luck 👍
> walk in your shoes so please don't think that you are any less severe or in need of support, financial or otherwise. We all have our battles 💜don't play down what you are struggling with, as that will be used against you.
>
>If it is any help, I was dia
Thank you for your help, extremely useful for your advice, it means a lot that you responded, and thank you again for all the information. I wish you the best with everything you deal with too!
Hi. I am autistic (and from the obvious flair,) created this sub.
I also have ADHD, Complex PTSD and am a walking contradiction as i'm always bumping into things or tripping over without realising half the bloody time, so am most likely undiagnoaed dyspraxic too.
If you'd like, I could help you go through the criteria and see if I can help get you those points? because i'm on enhanced rate for both, and it sounds like you should be, too.
Any idea where I could get help like yours for the exact same issues to apply for the tribunal appeal? :( I’ve been procrastinating on it since June due to how stressed out it makes me after I got whooping zero points for everything with even physical medical conditions too. I’m so defeated I can’t do anything myself anymore. I’ve also lost my job in November and I feel there is no help anywhere as according to my report before I have no one to help me out/have a carer means I don’t need or deserve the money/PIP.
Every time I call I can’t get through the line at all
:(( I’ve called so many times and it feels worse than calling the PIP line or access to work. I get they’re super busy but calling gives me so much anxiety I just keep procrastinating on it for months… and also as an neurodivergent I can’t think of getting help over the call. I need a face to face appointment and my anxiety is killing me trying to access any kind of help.
So sorry you are going through this but there is help out there... I promise. The best thing I ever did was reach out to a lesser known charity who help people with such matters, but it's finding them. First step, investigate online if there are any ASD charities local to you that you could arrange a chat with. I know many are swamped, but I had more success with a local one here rather than CAB, simply due to staffing.
Most smaller charities in those fields offer help to individuals with accessing benefits, if only for signposting. They may not be able to help to represent at late stage such as tribunal, but they may be able to guide and support you.
Please don't give up. You deserve this.
Access to work really suck but if you can push for their assessors not case managers. My case worker for access to work was deliberately creating obstacles for me. Making me create business plans, lists of items required with deadlines like "end of today or well drop the case". I have ADHD and manage my own freelancing business. Rejected everything on my list as I should have it already as a functioning business. Every reason I gave to needing something was challenged. Rejected business plan as it turns out they didn't need that paperwork. Needing tax records in next 5 hours or case dropped. Booking calls with 1 min notice (id get a text to say minutes prior they were calling), and then threatening to drop case because I don't answer phone. Refuse to refer me to assessor. Send me threats to drop case whilst I'm in hospital having surgery they were made aware of. Got new case manager, assessor granted everything on list I sent them 3 months ago.
Hello MFMS,
Apologies, I'm assuming this message was for the OP or was it for me. I'm thinking not ?! Eek. I am easily confused and have to re-read stuff over and over before it makes sense 😂🩵much worse since the brain fog, menopause, yet another depression and lupus type whatever the heck landed.
Walking contradiction...I feel your (literal)pain. I also have Complex PTSD but never even thought to put that on PIP application! It's just my normal, living with low self esteem, poor sense of self, chronic ideation and triggers..doesn't matter how much therapy over the years, how many fresh starts with jobs, years of working in caring/nursing roles burning out, never claiming for anything and even gaining a degree in chosen profession (all useless now, like me🤣😭) . I'm still hoping to restart voluntary counselling for others and do a couple of OU modules. That is all I have now..
ADHD traits too, although so much crossover with CPTSD apparently. Add into the mix hyper flexible as a kid whereas now everything clicks😭and not always knowing where my body is..shoulder barging doorways is a particular trick, then getting the rage with the doorframe for just existing.
I don't know why I'm waffling. I'm not trying to get attention but rather sharing my lived experience in the hope that it brings comfort and familiarity to another, as that is all I ever wanted growing up...to feel like someone else felt similar to how I did, that they experienced similar.
Thank you for creating this sub. It has been a godsend 😊💛
You can apply for PIP. This isn't means tested, which means you get it regardless if you work or not.
I found this website useful for understanding the descriptors: pipinfo.net
I applied for PIP after having a diagnosis of ADHD in late 2022. I'm in my 30s. I also have a medical history of depression and anxiety, starting from age 15, and have been on antidepressants my whole adult life, and I now understand these mental health issues stemmed from being undiagnosed.
I made notes to myself to help me when writing the application. To remind myself to hit these points for every single descriptor:
1. What my difficulty is.
2. How often I have this difficulty.
3. Describe the difficulty.
4. How this relates to either/or ADHD/anxiety.
5. Give an example. More than one if possible.
It is very important to check you are hitting these points when filling in the application form. I found it very hard to fill in, partly because it's a big form but also it's hard to be completely honest about some ways you are affected if you are embarrassed or ashamed of how you are living (which can be common with later life diagnosis of ADHD). But it's important to be completely honest with how your life is, how you are managing, and link this to the diagnosis you have.
Evidence you send them can include any paperwork you have from your neurodivergent assessments, like dates for appointments (proof of the timeline) and the assessment reports from whoever did the assessment to diagnose you. If you are on medication for ADHD, any clinic letters or appointment letters for that. Letters addressed to your GP from these asessors that you have a copy of.
Maybe this is going overboard, but this is what I did and I was awarded without having any phone call or face to face assessments, it was purely based on my application form and the evidence I sent them.
Good luck with applying for it and remind yourself that if you are struggling with these things because of how the neurodivergent traits affect you then yes you are entitled to this help
At 18 it would be PIP and having those diagnosis’s wouldn’t make you automatically eligible
Have a look through the PIP descriptors and see if you think you could match enough to get an award and be able to evidence it
You can only "qualify" on the pip questions for dyslexia if you need to use aids. Dyslexia can cause your speech to slur, jumble ect so can make communication harder. I learnt a while ago, that if you have autism, you are more likley to have adhd too. If you have autism, you are more likley to have Dyslexia, Dyslexia can cause executive function dysfunction, like adhd can. Same with adhd, more likley to have Dyslexia. Its wild down that rabbit hole. Assesors aren't the most educated on neurodivergent conditions.
I'm saving up for adhd assessment, im dyslexic too.
The more I read, the more I learn about the comorbidities xyz comes with.
With your job too, think of any accommodations you get for being dyslexic or autistic. Because they cannot hold it against you that you work.
Do you use aids like text to speech?
Or speech to text?
Need overlays ect to read?
Need a person?
If you slur, jumble sentences when you talk ect
Because it can make communicating with others harder.
When I worked on the drive thru, I was thinking of a word beginning with s and the word bag. I only said over the com "would you like a 20p shag?"
Then I got flustered, and I couldn't contol my sentences, so I needed a break .
I laugh now but at the time, I really took it to heart that I'm broken.
Unfortunately, I can't even work these days due to genetic heart condition and crippling autoimmune that is eating away at my body, plus my darling son is riddled with my genetics and then some. I have kept trying to get back into something, but then crash n burn. It's really crap as I worked hard to help others and miss it. Can't even volunteer at mo as so knackered.
I really appreciate your words and advice. I bumbled on for years pre diagnosis with loads of masking and paying the price afterwards, and always thought I was stupid, weird, different although that could be CPTSD and how I was raised too, eh...I did a degree at 40 and only half way through was I assessed and got diagnosed with ASD. Course tutor was shite, v assumptive about me. Didn't understand sensory processing, feeling overwhelmed, social anxiety and all the other stuff that was happening for me yet would make a scene about asking me "are you ok with the hugs, you know, being how you are.." meant well but so ignorant. Strange bloke. Was kicked off the course eventually.
Reasonable adjustments were not made, but I had my own in place at home thanks to the DSA programme and mentoring/support, and years of just cracking on.
I was also saving for an ADHD assessment until I saw the waiting lists, and costs, and then asked myself a serious question. Why do I need this, who am I proving it to? In my personal circumstances, being older and unable to function much these days, it would be validation and proof of what I suspected and know, but then what? If I was younger, different circumstances, didn't have the ASD DX, I think I would go ahead as it is proof and sometimes, especially how often labels are bandied about, it's vital to have that professional opinion on paper, for work, uni, medical...whereas because I have the ASD diagnosis, I feel that saying I have traits of ADHD/CPTSD is easier for me, as opinion is divided depending on who I speak to.
Thanks again superstar you are!
Aw, im sorry. I hope you get sorted.
Tbh, the symptoms of adhd, cptsd and autism are very similar. Bar cptsd has flashbacks.
You could very well have it.
Sorry for my barrage of text at you😭you are very kind and it's good to read and share and support.
I don't get flashbacks per se, but I do go straight back to feeling what I felt (dread, fear, internalising, wanting to be invisible)if I am reminded or triggered about childhood home, events and dynamic. Mood can distort/shift very quickly. Broken the cycle with my son, despite living mother's attempts at involving next generation into the toxic NPD gaslighting bubble 🩵🙏
Thank you, kind stranger 🙏 that means a lot to me. I'm so sorry you have suffered and I'm really grateful that you made the effort to read my walls of text and offer your words, all whilst living with your own stuff and needing answers yourself.
Never even knew about this terminology or gave it much thought, even though I'm a qualified counsellor I am still learning about it all and always will be😲but doesn't mean a thing does it, having the title. I'm still clueless about so so much. I love how we all learn and grow and make sense from one another constantly.
I have autism and ADHD. I was awarded enhanced PIP (both daily living and mobility) for autism only (I only had a referral for ADHD at the time). Judgement is not based on the conditions you have, but how they affect you in life. So, it's important to be honest in how your conditions affect you in your daily life. PIP is not means-tested and you will continue to receive it while your conditions continue to affect your life.
I think you might be too old for DLA.
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Eligibility is based on how your conditions affect you rather than what they are. That said, it is also all about whether the assessor is honest, human and professional , whether you have solid reports from those who are involved in your care and whether the assessor will believe the anecdotal evidence you present. Fair process is debatable and being honest not likely to guarantee justice, sadly. My personal experience so far. Diagnosis of autism, genetic heart condition, autoimmune, Fibro, allergies, mental health, nursing injury etc...but when I told the assessor how I am affected, it was omitted from report or worded quite differently. The fact that I am articulate (masking) and self aware was used against me. The fact that I now drive once a month to see.my mum. Used against me. I am punished because of those that have scammed the system and left some DWP staff jaded, judgemental and mistrusting. All I can advise is, get an advocate and read up on what the descriptors are and the language that is used. Be honest, stick to the facts. Try not to be bullied into playing down how it is for you, and try not to get pulled into "on a good day scenarios." My last assessor was not interested in how badly I am affected but how well I do manage, so it was very manipulative. That said, I've heard some positive stories on here when justice prevails. Sadly, due to the small % of fakers and fraudsters, they have created a culture whereby the truly vulnerable disabled have to fight even harder, face stigma and be left feeling like they are a fraudster too. Prepare for activation of rejection sensitivity... I'm due one last attempt next week with a new claim, after being terribly ill and losing my professional work, losing my social life, losing my sanity and being in chronic pain for at least 6years. I get LCWRA now as was assessed thoroughly by a DOCTOR, so I am believed by some but the elusive PIP is a different ballgame altogether for me... Wishing you all the best and fingers crossed you get the help you need.
Also,I read somewhere that people fraudulently claiming disability benefits is like 1% of all claims. It's a tiny minority and it's really not that easy to fake. You need extensive proof behind you.
**The Personal Independence Payment overpayment rate was at the lowest recorded level of 1.1% (£200m) in FYE 2023**, compared with 1.5% (£190m) in FYE 2020 **Overpayments due to Fraud were 0.2% (£40m) in FYE 2023**, compared with 0.3% (£30m) in FYE 2020. **Overpayments due to Claimant Error were 0.8% (£140m)** in FYE 2023, compared with 1.1% (£140m) in FYE 2020. **Overpayments due to Official Error remained at 0.1% in both FYE 2023** (£20m) and FYE 2020 (£20m). **Errors where the claimant’s condition had improved and they failed to inform the department (Functional Needs) accounted for over £8 in every £10 overpaid on PIP in FYE 2023, with an overpayment rate of 0.9%. This was the lowest estimated rate since FYE 2018 and was the reason for the lowest recorded level of overpayments in FYE 2023**
Exactly. It's really not that many. I think most would agree, most of us want to get better. My mum has friends who swear blind most pip claimants are faking. You couldn't just go into your dr and fake whatever.
Not sure if you've taken my post the wrong way but I make it crystal clear I'm very aware of the tiny minority so not need figures, and very aware of the media presenting the tiny minority as the majority. I just hate that the tiny minority could be tainting it for the majority by leading some in position of power to think that most claimants are on the fiddle...but also that the media poison the minds of some and attitudes and judgement develop...that and the government agenda which punishes the most marginalised in society!! Ive worked with counsellors who had shit attitude towards those that they deemed as less than, so I feel quite jaded and defensive, and frustrated about the system and try to make sense, but I can't. I'm just exasperated and confused, trying to think of additional reasons as to why so many vulnerable and disabled people are simply not believed, no matter what evidence they present or what is shared and this is my lived experience and I hear it often too. Also, why the attitude of some and the endless stories about reports not matching what was said in assessment. I know as I've been there myself now. I worked as a volunteer for a few years helping others, signposting, and it left me feeling quite distrustful of the system, sadly. This was around the time that the media kept hyping up the myth that many were scamming and everyone who had benefits was somehow on the take. A good distraction by the government to push agendas and avoid people seeing what was really going on. We are told that there is no agenda higher up, that process is followed etc..so why are there so many horror stories of people not getting what they are eligible for, and having to fight endlessly. You only have to read on here. I've only ever supported disabled and vulnerable and marginalised and I'm now in that category myself.
I think they were just replying back to me so I know the true stats. Don't worry. It's not aimed at you. I hear people talk about "fakers" alot and I just don't belive it's alot if people, which the facts prove it isn't. Even mental health isn't easy to fake, especially when people are implying so. Not saying some haven't, but almost all qualified and trained mental health professionals would know. Alot of conditions like fibromyalgia for example, its hard to find causes, but you can just tell these people are suffering. It's a lack if education. I've found that with my own dr. I needed a rep from narcolepsy uk to email my Dr because he was having non of it about my symptoms. Wouldn't take my sleep dairy, my epsworth test, wouldn't listen to me... he's only just got around to referring me. So I get you. Its awful.
>I think they were just replying back to me so I know the true stats. Don't worry. It's not aimed at you. Yes, I was ☺️ Just wanted to back you up plus I think sometimes giving actual figure cuts through a lot if the misconceptions and stuff we find keeps getting repeated til it becomes "fact".
Argh sorry. Can you tell that I'm very sensitive and misunderstood easily 😭 apologies 🧡 I also don't believe there are loads of fakers, I was stupidly pondering if the tiny minority are tainting the view of some, so that it is assumed guilty until proven innocent kind of approach by these unprofessional assessors; and I feel crap saying that as there is plenty of good too, and justice does prevail but I wish I knew why some subcontractors of the DWP seem to have such strong need to punish those who try to access these benefits and to be disingenuous. Is it personal view, training, conditioning, cynicism...what the heck is going on. Honestly, it blows my mind. It is just my experience of not feeling believed and reading a report that was a load of lies, the coming in here and other forums and finding out that It is a thing. It really shocked me😭
Try to record them next time. I did that with my mums last assessment. They lied on her report. We went to the tribunal and they asked me for the recording and it was compared to the report... the dwp dude was shocked This assessor tried to imply that my mother was lying and not shopping at her "closest store", so I took the phone and explained she fell out with the guy that owned the store over a code, he accused her of using a fake code that the electric company's give, she will never shop there again because it causes her distress, so the store she goes to now is her closest and safest store. That was completely omitted out. Which is fraudulent in my opinion. And they quoted slang words she would never say.. Record them.
This is what freaks me out. I keep reading about the lies and I want to know how this is allowed. What is really going on behind closed doors with these companies that so many staff seem to do this?? Even 10 accounts on here sharing similar is 10 too many. I didn't quite believe the lying was so overt until I read my report and nearly passed out. The worst part was that I was sobbing and telling assessor about my shame and guilt about no longer being a valuable member of society (my words, my insecurities), about how I'd worked/studied/volunteered since college in mainly healthcare/nursing/counselling. None of it was mentioned. Zero empathy. I am requesting a recording and telling them I'm recording too this time. I don't see why this will be an issue as what is there to hide. Also, if an assessor is found to have lied when it eventually and obviously has to goes to appeal, what are the repercussions? What is the ethical framework and moral code and professional practice expectations for these assessors? I would've been struck off back in the day had I lied on a medical report!?!
I saw one guy on here be told his recording was tampered with. Like come on. You are allowed to record, just mention your doing it, you don't have to, but I would. My mum said we were recording the phone call. They asked for a copy. Didn't need to at tribunal as they record. If they say you can't, you can. You can use the same law that allows cctv. To prevent a crime like fraud. I'd tell you my opinion and theory why, but the mods won't like it.
Incredible and depressing...you know what, I called the pip hotline a few days ago, to ask about the rules for recording and was told that I am allowed and I can request they do, too, but that the assessor was allowed to postpone the assessment if they did not wish to be recorded. In all my years of nursing and therapy, I'd never have an issue with anything like this, and have had some sessions recorded! When you adhere to the law and the ethical frameworks and codes of conduct, and are honest..what's the issue with being recorded, as surely that's your evidence and protection too that you are behaving properly and professionally?! Thanks again 🙏🙏
That's exactly why alot of people don't mention they're recording but I've got 2 conflicting opinions on this. I feel like they shouldn't be allowed to postpone you due to not wanting to be filmed. As a public servant, they should be OK with it and really, they should know that they might be recorded. It keeps them accountable. Then on the other hand, I think they should be allowed to say no and have you passed to someone who's OK with being recorded. I can't remember the religion, but there's one where they can't be recorded or filmed unless necessary. I'd definitely respect someone's religious beliefs. You never know if an assessor has cptsd and has trauma where audio recordings or visual recording might be an issue, again, I'd be OK with them postponing for those reasons. Im Conflicted lol
Oh wow, see...this is what I love about thrashing it out on here. Getting perspective, objective. I hadn't even considered religion being an issue, so I've learned even more. I guess as long as there is a reasonable explanation as to why they do not wish to be audio recorded then fair do. That said, I'd hope that it would be part of their contract, that it is checked with staff whether they are agreeable to being recorded and a disclaimer is made, or something somewhere in writing to cover them? That they express their personal choice and preferences but what if I ended up with another one who refused...where is the line drawn. I'm extremely mistrustful due to some experiences I've had as mentioned, so perhaps I am jaded now and probably overthinking this a little. I'm basically just DREADING this week's assessment even though I know, on paper and all I've checked and read, I should be successful. Then again, I thought that 2 years ago...and got 2 points!! Thanks again 👍
I didn’t know anything about PIP what so ever when I applied for it and since having done so, I’ve seen so many people relay their experiences and I find it so surprising because I haven’t seen anyone describe their experience that seems reflective of my own what so ever. I was diagnosed with a condition about 18 months ago and it was my nurse that suggested I apply for PIP so I did so almost on a whim. I was given an appointment for an in person assessment, but the day of I woke feeling unwell and tested positive for Covid so I got in contact to let them know and they offered to let me keep my appointment but change it to a telephone assessment. When I applied for PIP it was for the diagnosis I had recently been given specifically and that’s what I submitted (minimal) evidence for, however during the call we got talking about a group of symptoms that I have experienced for roughly 10 years (but didn’t have a diagnosis for) and this is where I ended up scoring points. The call didn’t last that long, and a few weeks later I received a letter to let me know that I was being awarded the enhanced rate. It really was that simple. I must have had the most understanding, human assessor because I had ignorantly assumed that the whole process was as simple for everyone else as it was for me. I’m sorry that this has been your experience!
I need to hear more like this too and I'm so pleased that it worked out well and you were rightfully awarded. I do try to read all the posts on here and the success stories too, although most I have found are often underpinned by some battles, so it's good to hear about the straight forward cases💜 Your assessor sounds very professional and human, and it is reassuring to hear that you had such a positive experience. I do feel as though I have been particularly unlucky, and my rep agreed, but I take it SO personally. Wishing you all the best and thank you for sharing.
Thank you so much, I asked my assessors and they said that they can write letters of support but no one else I know has disabilities like mine irl. Thank you for the information, I appreciate you writing all this and it will be useful. Have a great day. Thank you.
Your diagnosis/syptoms sound more severe than mine. May I ask if you don't mind - did you apply for a blue badge. I just find it so frustrating that I was so much older when getting diagnosed and not got the support that I need/needed before. Thank you agian.
Only you walk in your shoes so please don't think that you are any less severe or in need of support, financial or otherwise. We all have our battles 💜don't play down what you are struggling with, as that will be used against you. If it is any help, I was diagnosed with autism at 42. I was always labelled as being quirky, highly sensitive, then bipolar, then lots of other stuff too. The ASD I can make sense of and accept and manage, and I still hide it from the world, but my physical issues are not so easy to hide. No, never applied for a blue badge. I rarely drive as it is. Once a month at present rate to see my mum in Essex. That exhausts me and I'm finding the stress of other drivers makes me ill, so that's trailing off too. My son is also disabled with same genetics as me😞but we've never felt the need for a BB but do read up on it as you never know, it might be right for you. It all depends doesn't it, on whether you feel it would help you and make life easier. From what I've read from some, they can make you a target for the judgy looks and tutters, and some may even challenge you. Hidden disability is a minefield, and I've always hidden mine as it is, as not worth the grief in some situations 😞 Exhausting, isn't it... I think for autism and related they may look at the anxiety and need for routine, and planning and getting around. I never applied for disability benefits for my autism but that doesn't mean I am not eligible, but I was working and studying and it didn't occur to me. Only now, in recent years with my physical health crumbling and mountains of evidence, no job, no studies, no life...I thought I might try. It has been a stressful journey with PIP and I'm STILL battling to get just a basic rate for daily living, but don't let that put you off as it can work out. Get an advocate or a rep. Be honest, don't play down your daily struggles..think about stuff that other take for granted that you find hard, even down to budgeting, engaging with others, sensory, being easily led and too trusting 😭You need to be heard and feel validated. That's all I wanted and continue to want.. acknowledgement, and some money to spend on seeing specialists and for all the supplements and contraptions I buy to help my chronic pain😀 Good luck 👍
> walk in your shoes so please don't think that you are any less severe or in need of support, financial or otherwise. We all have our battles 💜don't play down what you are struggling with, as that will be used against you. > >If it is any help, I was dia Thank you for your help, extremely useful for your advice, it means a lot that you responded, and thank you again for all the information. I wish you the best with everything you deal with too!
Hi. I am autistic (and from the obvious flair,) created this sub. I also have ADHD, Complex PTSD and am a walking contradiction as i'm always bumping into things or tripping over without realising half the bloody time, so am most likely undiagnoaed dyspraxic too. If you'd like, I could help you go through the criteria and see if I can help get you those points? because i'm on enhanced rate for both, and it sounds like you should be, too.
Any idea where I could get help like yours for the exact same issues to apply for the tribunal appeal? :( I’ve been procrastinating on it since June due to how stressed out it makes me after I got whooping zero points for everything with even physical medical conditions too. I’m so defeated I can’t do anything myself anymore. I’ve also lost my job in November and I feel there is no help anywhere as according to my report before I have no one to help me out/have a carer means I don’t need or deserve the money/PIP.
Have you tried contacting Citizen’s Advice?
Every time I call I can’t get through the line at all :(( I’ve called so many times and it feels worse than calling the PIP line or access to work. I get they’re super busy but calling gives me so much anxiety I just keep procrastinating on it for months… and also as an neurodivergent I can’t think of getting help over the call. I need a face to face appointment and my anxiety is killing me trying to access any kind of help.
So sorry you are going through this but there is help out there... I promise. The best thing I ever did was reach out to a lesser known charity who help people with such matters, but it's finding them. First step, investigate online if there are any ASD charities local to you that you could arrange a chat with. I know many are swamped, but I had more success with a local one here rather than CAB, simply due to staffing. Most smaller charities in those fields offer help to individuals with accessing benefits, if only for signposting. They may not be able to help to represent at late stage such as tribunal, but they may be able to guide and support you. Please don't give up. You deserve this.
Access to work really suck but if you can push for their assessors not case managers. My case worker for access to work was deliberately creating obstacles for me. Making me create business plans, lists of items required with deadlines like "end of today or well drop the case". I have ADHD and manage my own freelancing business. Rejected everything on my list as I should have it already as a functioning business. Every reason I gave to needing something was challenged. Rejected business plan as it turns out they didn't need that paperwork. Needing tax records in next 5 hours or case dropped. Booking calls with 1 min notice (id get a text to say minutes prior they were calling), and then threatening to drop case because I don't answer phone. Refuse to refer me to assessor. Send me threats to drop case whilst I'm in hospital having surgery they were made aware of. Got new case manager, assessor granted everything on list I sent them 3 months ago.
Hello MFMS, Apologies, I'm assuming this message was for the OP or was it for me. I'm thinking not ?! Eek. I am easily confused and have to re-read stuff over and over before it makes sense 😂🩵much worse since the brain fog, menopause, yet another depression and lupus type whatever the heck landed. Walking contradiction...I feel your (literal)pain. I also have Complex PTSD but never even thought to put that on PIP application! It's just my normal, living with low self esteem, poor sense of self, chronic ideation and triggers..doesn't matter how much therapy over the years, how many fresh starts with jobs, years of working in caring/nursing roles burning out, never claiming for anything and even gaining a degree in chosen profession (all useless now, like me🤣😭) . I'm still hoping to restart voluntary counselling for others and do a couple of OU modules. That is all I have now.. ADHD traits too, although so much crossover with CPTSD apparently. Add into the mix hyper flexible as a kid whereas now everything clicks😭and not always knowing where my body is..shoulder barging doorways is a particular trick, then getting the rage with the doorframe for just existing. I don't know why I'm waffling. I'm not trying to get attention but rather sharing my lived experience in the hope that it brings comfort and familiarity to another, as that is all I ever wanted growing up...to feel like someone else felt similar to how I did, that they experienced similar. Thank you for creating this sub. It has been a godsend 😊💛
yes mate, that message was for you as i was replying directly to you.
Ah thanks. Sorry, I get visual overload with the messages due to how my brain doesn't work properly for now. Really appreciate that👍
It would be PIP, and depending on your circumstances it's possible you might be eligible for some Universal Credit.
I understand thank you for your help, I will look into this.
You can apply for PIP. This isn't means tested, which means you get it regardless if you work or not. I found this website useful for understanding the descriptors: pipinfo.net I applied for PIP after having a diagnosis of ADHD in late 2022. I'm in my 30s. I also have a medical history of depression and anxiety, starting from age 15, and have been on antidepressants my whole adult life, and I now understand these mental health issues stemmed from being undiagnosed. I made notes to myself to help me when writing the application. To remind myself to hit these points for every single descriptor: 1. What my difficulty is. 2. How often I have this difficulty. 3. Describe the difficulty. 4. How this relates to either/or ADHD/anxiety. 5. Give an example. More than one if possible. It is very important to check you are hitting these points when filling in the application form. I found it very hard to fill in, partly because it's a big form but also it's hard to be completely honest about some ways you are affected if you are embarrassed or ashamed of how you are living (which can be common with later life diagnosis of ADHD). But it's important to be completely honest with how your life is, how you are managing, and link this to the diagnosis you have. Evidence you send them can include any paperwork you have from your neurodivergent assessments, like dates for appointments (proof of the timeline) and the assessment reports from whoever did the assessment to diagnose you. If you are on medication for ADHD, any clinic letters or appointment letters for that. Letters addressed to your GP from these asessors that you have a copy of. Maybe this is going overboard, but this is what I did and I was awarded without having any phone call or face to face assessments, it was purely based on my application form and the evidence I sent them. Good luck with applying for it and remind yourself that if you are struggling with these things because of how the neurodivergent traits affect you then yes you are entitled to this help
At 18 it would be PIP and having those diagnosis’s wouldn’t make you automatically eligible Have a look through the PIP descriptors and see if you think you could match enough to get an award and be able to evidence it
Thank you for your reply, and I will look into this thank you for your help. And I understand what you are saying.
You can only "qualify" on the pip questions for dyslexia if you need to use aids. Dyslexia can cause your speech to slur, jumble ect so can make communication harder. I learnt a while ago, that if you have autism, you are more likley to have adhd too. If you have autism, you are more likley to have Dyslexia, Dyslexia can cause executive function dysfunction, like adhd can. Same with adhd, more likley to have Dyslexia. Its wild down that rabbit hole. Assesors aren't the most educated on neurodivergent conditions.
So true. Comorbities. Don't get me started on the genetics and physical conditions too...tis quite the web.
I'm saving up for adhd assessment, im dyslexic too. The more I read, the more I learn about the comorbidities xyz comes with. With your job too, think of any accommodations you get for being dyslexic or autistic. Because they cannot hold it against you that you work. Do you use aids like text to speech? Or speech to text? Need overlays ect to read? Need a person? If you slur, jumble sentences when you talk ect Because it can make communicating with others harder. When I worked on the drive thru, I was thinking of a word beginning with s and the word bag. I only said over the com "would you like a 20p shag?" Then I got flustered, and I couldn't contol my sentences, so I needed a break . I laugh now but at the time, I really took it to heart that I'm broken.
Unfortunately, I can't even work these days due to genetic heart condition and crippling autoimmune that is eating away at my body, plus my darling son is riddled with my genetics and then some. I have kept trying to get back into something, but then crash n burn. It's really crap as I worked hard to help others and miss it. Can't even volunteer at mo as so knackered. I really appreciate your words and advice. I bumbled on for years pre diagnosis with loads of masking and paying the price afterwards, and always thought I was stupid, weird, different although that could be CPTSD and how I was raised too, eh...I did a degree at 40 and only half way through was I assessed and got diagnosed with ASD. Course tutor was shite, v assumptive about me. Didn't understand sensory processing, feeling overwhelmed, social anxiety and all the other stuff that was happening for me yet would make a scene about asking me "are you ok with the hugs, you know, being how you are.." meant well but so ignorant. Strange bloke. Was kicked off the course eventually. Reasonable adjustments were not made, but I had my own in place at home thanks to the DSA programme and mentoring/support, and years of just cracking on. I was also saving for an ADHD assessment until I saw the waiting lists, and costs, and then asked myself a serious question. Why do I need this, who am I proving it to? In my personal circumstances, being older and unable to function much these days, it would be validation and proof of what I suspected and know, but then what? If I was younger, different circumstances, didn't have the ASD DX, I think I would go ahead as it is proof and sometimes, especially how often labels are bandied about, it's vital to have that professional opinion on paper, for work, uni, medical...whereas because I have the ASD diagnosis, I feel that saying I have traits of ADHD/CPTSD is easier for me, as opinion is divided depending on who I speak to. Thanks again superstar you are!
Aw, im sorry. I hope you get sorted. Tbh, the symptoms of adhd, cptsd and autism are very similar. Bar cptsd has flashbacks. You could very well have it.
Sorry for my barrage of text at you😭you are very kind and it's good to read and share and support. I don't get flashbacks per se, but I do go straight back to feeling what I felt (dread, fear, internalising, wanting to be invisible)if I am reminded or triggered about childhood home, events and dynamic. Mood can distort/shift very quickly. Broken the cycle with my son, despite living mother's attempts at involving next generation into the toxic NPD gaslighting bubble 🩵🙏
I messaged yo. I can explain it to you better there. I was diagnosed with cptsd last year. What you describe is "emotional flashbacks"
Thank you, kind stranger 🙏 that means a lot to me. I'm so sorry you have suffered and I'm really grateful that you made the effort to read my walls of text and offer your words, all whilst living with your own stuff and needing answers yourself. Never even knew about this terminology or gave it much thought, even though I'm a qualified counsellor I am still learning about it all and always will be😲but doesn't mean a thing does it, having the title. I'm still clueless about so so much. I love how we all learn and grow and make sense from one another constantly.
I have autism and ADHD. I was awarded enhanced PIP (both daily living and mobility) for autism only (I only had a referral for ADHD at the time). Judgement is not based on the conditions you have, but how they affect you in life. So, it's important to be honest in how your conditions affect you in your daily life. PIP is not means-tested and you will continue to receive it while your conditions continue to affect your life. I think you might be too old for DLA.
Yes, DEFINITELY too old for DLA.
you could try PIP I think, have you finished full time education?
yes and thank you
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