The Dreaded PIP Form

[xudo]

So, I have decided to finally bite the bullet and apply for PIP. For those who don't know, this is a UK disability benefit called Personal Independence Payment.

I am currently filling out the PIP2 form with the help of my husband, and already it's confusing and a bit overwhelming. Most of the daily living stuff doesn't really apply to me, but some of it you could kind of see how possibly part of it does but the majority doesn't - this makes me feel deflated like as if they've done this on purpose, to make it deliberately awkward for anyone who is applying (and sadly I think that's not far off.)

I know others here have been through the process, so is there any advice you could offer me? Maybe there's something you wish you'd known or added when you were applying? According to the points system, I should be eligible for at the very least standard rate daily living - but I know the likelihood is refusal and having to appeal.

Thanks in advance for any help/advice.

 

[Crossbreed]

In the USA we have attorneys that are willing to do all of the heavy lifting. They get a nominal portion of your initial award, if they are successful, but charge nothing otherwise. Does the UK have something like that?

I have seen our (equivalent) forms. They ask about physical disability & cognitive disability --I have neither; I am capable in both of those areas. They are not really set up for social disability. (Neither are our vocational rehabilitation services, for that matter.)

 

[Shamar]

So, I have decided to finally bite the bullet and apply for PIP. For those who don't know, this is a UK disability benefit called Personal Independence Payment.

I am currently filling out the PIP2 form with the help of my husband, and already it's confusing and a bit overwhelming. Most of the daily living stuff doesn't really apply to me, but some of it you could kind of see how possibly part of it does but the majority doesn't - this makes me feel deflated like as if they've done this on purpose, to make it deliberately awkward for anyone who is applying (and sadly I think that's not far off.)

I know others here have been through the process, so is there any advice you could offer me? Maybe there's something you wish you'd known or added when you were applying? According to the points system, I should be eligible for at the very least standard rate daily living - but I know the likelihood is refusal and having to appeal.

Thanks in advance for any help/advice.

Here in the U.S., disability is solely based on ability to work. I applied (grueling), with psych references and reports. The rules are clear that autism (no qualifiers) IS a disability. They came back with a denial that because I worked for a number of years, I was not disabled. The fact that I could rarely find a job, or could not hold it due to autism was irrelevant.

I asked if a blind person who had worked would be denied on these grounds, and was told a legally blind person would not be denied despite working while blind. I asked the same question about a paraplegic and got the same answer. So apparently, while autism is officially a disability, in practical terms, it isn't. At least as far as Social Security Disability is concerned.

 

[Mary Lyn]

So, I have decided to finally bite the bullet and apply for PIP. For those who don't know, this is a UK disability benefit called Personal Independence Payment.

I am currently filling out the PIP2 form with the help of my husband, and already it's confusing and a bit overwhelming. Most of the daily living stuff doesn't really apply to me, but some of it you could kind of see how possibly part of it does but the majority doesn't - this makes me feel deflated like as if they've done this on purpose, to make it deliberately awkward for anyone who is applying (and sadly I think that's not far off.)

I know others here have been through the process, so is there any advice you could offer me? Maybe there's something you wish you'd known or added when you were applying? According to the points system, I should be eligible for at the very least standard rate daily living - but I know the likelihood is refusal and having to appeal.

Thanks in advance for any help/advice.

Hi you should get advice from the autistic society in the UK for this.

 

[xudo]

Does the UK have something like that?

Not really, no. There's things like Citizens Advice who are sort of there to help with these sorts of things for free, and I could also get maybe some advice from the Autism service in my city, but they've have become very wary of helping with benefit forms. The only time solicitors are really involved here is if you go to a tribunal to appeal the decision not to award.

They are not really set up for social disability.

Luckily, PIP does take into account for social issues. They did try to minimise the ability of people (especially those on the spectrum) to be awarded the benefit for such things, but a legal challenge ensured they had to stop that. However, they still refuse a large number of people who then immediately appeal and are awarded the benefit.

Hi you should get advice from the autistic society in the UK for this.

I have, but their advice is general and I was looking for advice from people who are actually autistic and have been through the process.

 

[Southern Discomfort]

Yeah, I claim both ESA - Income related and PIP. I'm the filthy parasite those people down the pubs on the Friday nights talk about. Haha

Make sure you approach it from a perspective as on your worst days. So I know you have OCD and Tourette's as well, Xudo. So on the days where that is really bad and non-stop think of what that is like and make sure you cover that.

The system isn't great. It has to be this way though obviously.

Hope that helps.

 

[Crossbreed]

I'm the filthy parasite those people down the pubs on the Friday nights talk about. Haha

We have that here, too.

 

[RosaViolet]

It is convoluted and designed to be a set of hurdles . Jumping through hoops. If you applied for DLA for children, you have a few skills relevant to the task.

There is an organisation called PIP claim help, plus ESA, DLA & Universal Credit, they specifically support with PIP, ESA with their guides, they also have a forum.
There is also Disability Rights UK, they provide guides, how to fill the form.

I struggled initially, but found inspiration from those sites. Generally, you need to understand the criteria, the meaning of 'reliably' and think outside of the box about your examples of need.
Take your time. You can ask for time extension, use it.

 

[Suzanne]

You should move to France!

According to my very sceptic husband, the door is open for me to claim financial aid, due to the fact that being autistic and on the spectrum, France recognises it's needs and when I looked at the point system, I definitely fit the critera for outside help.

There are wicked people out there, who successfully claim disability allowance etc, when in fact, they are perfectly normal and thus, those who are genuine, get mentally tortured, so to speak.

 

[Skids]

I have diagnosed autism at the higher end of the spectrum and i successfully applied for PIP although the stress and duration of the whole process was quite intense.

I also have other health conditions such as Myalgic Encephomyelitis (M.E) and also a skin disorder as well as an anxiety / panic disorder so i think these helped with some of the points scoring.

The key point to bear in mind and coming from myself who refused to buckle and ploughed through is this:

The process is designed to deter as many claimants as possible (even if you are eligible) as opposed to what it SHOULD be designed for which is to help as many people as possible and you really need to remember this and use it to your advantage.

If you engage in the process thinking you can trust anyone at any point during your claim (other than impartial judges at a tribunal ) then you will soon learn that you can't.

The assessment will be unprofessional and wholly inadequately skim over the key issues of your challenges with the condition. A simple question of "did you get here alright?" would mean refusal if you simply said "yes". Even if you struggled to get out of bed that morning due to crippling anxiety, could barely dress yourself, had to get a lift from a friend to the assessment centre because you cannot get public transport and you struggled to compose yourself when entering the room. This will not matter to them.

If you say "yes" then all that went on before is rendered irrelevant and the assessor will write down that because you said "yes" then he/she believes you are able to do 12 hour shifts in a biscuit factory for example. It's that ludicrous.

Expect to receive the assessors report and it to contain multiple lies, fabrications and key omissions from the actual assessment. This is by and large standard practice and this is designed to put claimants off at the first hurdle so they save money. It works too.

The assessor is effectively just admin staff paid to reel off questions and get the assessment done as quickly as possible. They aren't medically qualified and therefore unable to have any comprehension of autism difficulties.

My assessment report was so inaccurate and full of holes that it was my sheer anger at being treated this way that spurred me on to appeal.

I lodged an appeal which is called a Mandatory Reconsideration and stated why i thought the assessor was wrong. Again, most of these appeals get refused in the hope that you will give up and they save some money. In my case it was obvious that my evidence and documentation i had sent along with my appeal hadn't even been read by them.

So unless you are miraculously lucky or you have severe health issues whereby you can't even function properly then expect to be refused PIP as a matter of course at stage 1 assessment and first appeal stage 2 mandatory reconsideration.

Being refused again and having received no acknowledgment that they had even read my evidence i sent in i decided to take them to a tribunal.

It's important to point out that during the first two stages of the PIP application it is only the DWP (Department of Work and Pensions) assessors who see the report and any evidence sent in and no impartial assessors are part of this process.

This is why it's so easy for them to get away with such unscrupulous practices and refuse most claimants at the first hurdles because essentially it's your word against theirs and there is no impartial third party to see that they are lying and pulling a fast one.

At the tribunal, the assessment report along with all your evidence, appeals and complaints are seen by not only a fully qualified medical professional but also a judge who is independent of the DWP ensuring a fair and balanced hearing. Something not possible by the DWP.

You can choose to attend the tribunal hearing in person which is recommended as they can see first hand just how much you are struggling. However i opted for a paper hearing due to anxiety and stress which is where the hearing is held in your absence. I still won despite this.

I was given no points by the DWP but ended up with over 20 and was awarded high rate mobility and standard rate daily living for 5 years.

The trick is to not give up. They'll make you wait (mine over a year all in) and they'll make you angry but stick it out. Expect to get refused first two stages even if you've got your head hanging off but ALWAYS go to tribunal where about 70% of cases win.

Get as much evidence together as possible however minor and always try to see where you can score points. It's more about scoring points than how your condition affects you which is a fundamental problem with the whole process.

Concentrate on what the points values are for each question and formulate your answers in order to score the most points. It's a game really and if you go into it naive and trusting you'll come out with nothing. Sad but my findings from personal experience and that of friends.

All i wanted was a fair and accurate assessment and if they had refused PIP then i'd have probably walked away. As it was they lie and cheat and treat you with contempt and i didn't get a fair and balanced assessment so i fought them all the way and won.

Best of luck and don't give in. Fight all the way!

 

[RosaViolet]

The said forum and resources have a lot of tips and resources in terms of where the traps are and how to handle them. I suppose it could help to talk to people how they dealt with exactly similar problems.
Don't rush it. There is some regulation for the decision maker, how to award the points. It provides detailed guidance ho the decision maker how they should interpret information in the form. It is very useful.

 

[Kyou Nukui]

Just the thought of doing this makes me feel sick with anxiety. I will bookmark the forum and guide linked above just in case I'll ever feel up to it. I have no idea what "evidence" could even ecist so maybe one of those will help with that question at least.

 

[xudo]

Expect to receive the assessors report and it to contain multiple lies, fabrications and key omissions from the actual assessment.

Luckily (or not depending on how you look at it) I know this only too well. My Mum was on ESA when it was still Incapacity Benefit and my god...the report was chock full of outright lies.

If you engage in the process thinking you can trust anyone at any point during your claim (other than impartial judges at a tribunal ) then you will soon learn that you can't.

Again, from my Mum's ordeal and one of my friends having to go all the way to tribunal, I won't be trusting a single person who works for DWP/ ATOS Capita. Thank you for the in depth reply!

 

[Skids]

Just the thought of doing this makes me feel sick with anxiety. I will bookmark the forum and guide linked above just in case I'll ever feel up to it. I have no idea what "evidence" could even ecist so maybe one of those will help with that question at least.

I was officially diagnosed with autism by the NHS and therefore supplied all the relevant information from the report in terms of challenges i had with daily life and how my autism affects this as highlighted by the autism professional as well as the diagnosis letter.

I obtained a supporting letter from my GP which included my autism as well as other health conditions such as severe anxiety disorder and M.E.

I have had multiple sessions of counselling such as CBT for anxiety and depression with various providers so i sent all the details of these too. Don't worry if you aren't on any medication for anxiety and depression either. I'm on none and never have been despite having the problems for about 15 years.

For me personally i have little trust in doctors and the safety of drugs in general and if anybody thinks they are going to get me to swallow a pill without me knowing what the outcomes will be they are deluded. I have a fear and distrust of medication unless obviously i'm on deaths door or have no option whatsoever but to do so.

If i listened to all the GP's i'd seen for my mental health issues i'd be taking 4 or 5 different lots of tablets which would no doubt leave me in a worse state. If a GP thinks i'm going to swallow a drug on the basis of a 10 minute chat that could have all sorts of adverse effects then he's mistaken. I can function to a certain level without them and i can help by having talking therapy and that's enough for me. I've accepted my limitations with regards anxiety.

I explained that i have had an extreme phobia of taking any form of tablets due to autism and thus the reason why i'm on no medication for anxiety / panic and depression despite them limiting what i can do. This explained my reason for appearing to not be seeking any help medically for my problem which obviously the DWP will delight in telling you.

I also have had physio for back problems and muscle problems and included the details of my physiotherapist. I have M.E and included reports from the M.E service i am under.

I included written supportive letters from my partner and mother, both of who help me on a daily basis with various things such as accompanying me because i have anxiety etc. This really helps.

I am on a special water tariff also because i cannot shower due to sensory issues and must have a bath. Anyone in the UK who pays full price for their water should speak to their provider and ask if they do a watersure scheme where monthly water bills are just about halved if you have a need to take baths only due to a condition. I'm with Severn Trent. All you need is a doctors letter and send it off and they will change your bill.

Mention this in your PIP appeal. Literally any little thing, however minor can be turned into your advantage as evidence. You just have to think 'outside the box' (hate that term but appropriate here) as to what you can get hold of and use to your advantage.

 

[xudo]

I was officially diagnosed with autism by the NHS and therefore supplied all the relevant information from the report in terms of challenges i had with daily life and how my autism affects this as highlighted by the autism professional as well as the diagnosis letter.

I was diagnosed through the NHS too, and given precisely no information or help afterwards The help you get after diagnosis (especially when diagnosed as an adult) seems to vary wildly across the country. I have got the letter from the consultant who diagnosed me, one about having had CBT for OCD and one about seeing a neurologist for Tourettes. I'll have to get my husband to write me a supporting letter, as obviously he knows me the best. I can't ask my parents for letters as they're very dismissive of my diagnosis.

 

[Skids]

I was diagnosed through the NHS too, and given precisely no information or help afterwards The help you get after diagnosis (especially when diagnosed as an adult) seems to vary wildly across the country. I have got the letter from the consultant who diagnosed me, one about having had CBT for OCD and one about seeing a neurologist for Tourettes. I'll have to get my husband to write me a supporting letter, as obviously he knows me the best. I can't ask my parents for letters as they're very dismissive of my diagnosis.

I too received no help or support after my diagnosis was confirmed. The professional that diagnosed me was almost embarrassed and definitely apologetic that this was the case and i was sent on my way with nothing more than a list of autism services which unfortunately for me catered for either children / adolescents with autism or adults at the lower functioning end of the spectrum.

The message i interpreted from the NHS or anyone else for that matter was that i'd made it this far (into my forties) and held down jobs and relationships so therefore i don't need any help or support.

Bizarre really when it was precisely struggling all my adult life just managing to do things that NT people take for granted that led me to seek help and diagnosis in the first place. Because i was showing signs of chronic distress both mentally and physically.

I got diagnosed yes, which i am grateful for but there simply is no help out there for the people like myself who became adept at masking throughout life. Sadly over time to the detriment of ones health and wellbeing.

I'm glad you've got a supportive husband to write you a letter. Best of luck.

 

[Kyou Nukui]

I was officially diagnosed with autism by the NHS and therefore supplied all the relevant information from the report in terms of challenges i had with daily life and how my autism affects this as highlighted by the autism professional as well as the diagnosis letter.

I obtained a supporting letter from my GP which included my autism as well as other health conditions such as severe anxiety disorder and M.E.

I have had multiple sessions of counselling such as CBT for anxiety and depression with various providers so i sent all the details of these too. Don't worry if you aren't on any medication for anxiety and depression either. I'm on none and never have been despite having the problems for about 15 years.

For me personally i have little trust in doctors and the safety of drugs in general and if anybody thinks they are going to get me to swallow a pill without me knowing what the outcomes will be they are deluded. I have a fear and distrust of medication unless obviously i'm on deaths door or have no option whatsoever but to do so.

If i listened to all the GP's i'd seen for my mental health issues i'd be taking 4 or 5 different lots of tablets which would no doubt leave me in a worse state. If a GP thinks i'm going to swallow a drug on the basis of a 10 minute chat that could have all sorts of adverse effects then he's mistaken. I can function to a certain level without them and i can help by having talking therapy and that's enough for me. I've accepted my limitations with regards anxiety.

I explained that i have had an extreme phobia of taking any form of tablets due to autism and thus the reason why i'm on no medication for anxiety / panic and depression despite them limiting what i can do. This explained my reason for appearing to not be seeking any help medically for my problem which obviously the DWP will delight in telling you.

I also have had physio for back problems and muscle problems and included the details of my physiotherapist. I have M.E and included reports from the M.E service i am under.

I included written supportive letters from my partner and mother, both of who help me on a daily basis with various things such as accompanying me because i have anxiety etc. This really helps.

I am on a special water tariff also because i cannot shower due to sensory issues and must have a bath. Anyone in the UK who pays full price for their water should speak to their provider and ask if they do a watersure scheme where monthly water bills are just about halved if you have a need to take baths only due to a condition. I'm with Severn Trent. All you need is a doctors letter and send it off and they will change your bill.

Mention this in your PIP appeal. Literally any little thing, however minor can be turned into your advantage as evidence. You just have to think 'outside the box' (hate that term but appropriate here) as to what you can get hold of and use to your advantage.

Thanks for trying but I don't have any of this stuff. Having no friends or family means that I "manage daily tasks" independently, *smh*
I am sure it will be useful for others though.

 

[Skids]

Thanks for trying but I don't have any of this stuff. Having no friends or family means that I "manage daily tasks" independently, *smh*
I am sure it will be useful for others though.

Hi Kyou Nukui. I didn't think of others who had different circumstances to my own when posting so apologies for that. It wasn't intentional. I just didn't think of the bigger picture. I can appreciate it must be far, far more difficult for others with autism then it is for myself and i'm sad that i cannot help.

 

[Kyou Nukui]

Hi Kyou Nukui. I didn't think of others who had different circumstances to my own when posting so apologies for that. It wasn't intentional. I just didn't think of the bigger picture. I can appreciate it must be far, far more difficult for others with autism then it is for myself and i'm sad that i cannot help.

Nothing wrong with your list and I'm sure it'll be a help to others.
I always go to ESA reviews (late and) with nothing at all, and I have always included zero documentary evidence with the ESA form; so who knows, maybe it's entirely possible to just "wing it" for PIP too!
I suppose I should at least have a look at the PIP form even if it will make me anxious and depressed.

 

[xudo]

The message i interpreted from the NHS or anyone else for that matter was that i'd made it this far (into my forties) and held down jobs and relationships so therefore i don't need any help or support.

Precisely. I was 30 when I was diagnosed.

I'm glad you've got a supportive husband to write you a letter. Best of luck.

I honestly wouldn't cope without him. He has atypical Autism, so he understands me better than most.