Disabled girl’s PIP and Universal Credit experience, process explained and should you bother?
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- เผยแพร่เมื่อ 4 พ.ค. 2023
- Pip and universal credit for disability benefits can be a difficult and lengthy process, so I’ve talked you through my experience and my thoughts on whether you should bother applying for it!
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Reminder: everyone with ME/CFS is different! So you or someone you know might have a very different experience with ME/CFS than I do at the moment! Also, remember that chronic conditions such as these can change dramatically over time, so my life may look very different to this in the future (and has be A LOT worse in the past).
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About Me:
My name is Elinor, I am a 24-year-old sociology graduate who has been living with ME/CFS for 8 years. I also have anxiety and depression as co-morbid conditions! I started making TH-cam Videos consistently about my experience with chronic illness and mental health struggles in June 2020! I also love fashion, connecting with people in the community and being creative!!
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Ive had a 2 year battle with DWP and PIP. We went to court at the beginning of this month. I won…even the Judge asked why it had gone this far without the award being given as all the medical and psychiatric evidence was there…. Sadly those that are not in our position will never understand
Well said glad you won
@@abacdse Thanks, Sadly with the damage it has caused to my mental health, I’m not sure it was worth it,I’m now a pathetic broken shell of the man i used to be.
I had the same experience after almost two year wait
@@stuarthayes5880*congratulations Stuart. I understand the damage received but victory was quintessential also ever so necessary.*
Pip are not interested in your medical conditions, they are interested in what you can do. That quote was said to me from them. Think about what you can do not why. So why did they then task me with getting medical notes for my partner which took me over a month because our doctors are the worst in the country? Still that’s the quote from them i thought I would share it here.
I have gone through this process, and although not fun, I appreciate that the system exists. A couple of pieces of advice I have found helpful is to photograph or scan your application forms if you are posting them that way you have a record of exactly what you said. Also if your condition varies make sure to approach forms from how you would be on one of your worse days, there is no point saying you can walk to the shop if you can only do this once every 3 months and spend weeks recovering. Good luck to anyone going through the benefits system.
I was awarded PIP earlier this year, and I had to do it completely alone because with my parents I'd have to lie and downplay symptoms. I cried the entire way through, I did the whole thing in one go because it was the day before the deadline, and I felt depressed for weeks. I was shitting it for the assessment, but thankfully I got a lovely nurse, who was very kind, and even though there were inconsistencies and lies in the report, I got the PIP I deserved and I am SO grateful. It'll be life-changing when I move out
Well done! ❤
*how old are you?*
@@PepperstoneGB 17, 16 at the time
Well done ❤
It's for people like you
Pip is the most degrading system, I've had multiple sclerosis for almost 14 years now, managed to work full time in construction for the first 12 years, but the progression physically, mentally and cognitively meant for safety I had to stop, I'm already on lwrca, they fully recognise my disability, yet according to the pip assessor I scored zero points, basically she cured my multiple sclerosis,, my neurologist was disgusted, I'm working up the mental strength to apply again, been a year since last time. Pip should be done straight through the medical experts who already deal with you.
You are spot on about the pip process, I had a home visit and ended up having a breakdown, in front of my wife. I have cerebral palsy and still, it was like an interrogation. I have no chance of getting better only worse. I had a second assessment at home this time they sent two people and I was successful, they have now extended my PIP, and no more visits for a few more years.
My advice copy or record everything, and have someone with you for moral support and a witness.
The form filling can make you depressed, so fill it out with help from others.
I applied for PIP back in 2017/8(?) and it was up there with the most traumatic things I've been through medically tbh. I had to go to mandatory reconsideration and tribunal, absolutely wrecked myself trying to fight the lies the dismissive and ableist assessor wrote in her report, and didn't get it in the end. I've been putting off reapplying since, but due to a new chronic illness on top of my others, I'm increasingly struggling to pay for all the extra costs of being disabled. This video has encouraged me to reapply, and I really hope that it is a less traumatising experience this time round!! Very glad that you had a nice assessor and thank you for sharing the information for others
Record them. They ignore alot of what's said by applicants. Please record them.
@@HillbillyYEEHAAoh don't worry I was planning to
The concept of PIP sounds interesting (I have to google it, because I'm German).
I'm waiting for a decision called "Pflegegrad". You can get money to pay people helping you (personal care, household, grocery shopping etc.) This process is a mess, too. It's exhausting, complicated, a lot of paperwork.
At all going through something similar: Never give up!!!
pip is expensive but better than wasting money on Wars
I am currently in the ESA support group, moved from the wrag group. I have had no assessments since 2019. Had my pip review in Feb of this year. I had a phonecall from a decision maker, i must say he was very caring. He awarded me enchanced mobility, previously standard, daily living remained standard. Also be awarded on going award, with a light touch review in Ten years. What im worried about is this new benefit change coming out, getting disabled people back into work. No two day's are the same for me, i would never be able to hold on to a Job. Im 60.
great you had someone good! I know it feels very uncertain at the moment, hopefully it works out!
I wish this applied to the U.S., thank you for making this video for those in the U.K. and helping us all out.
It does exist in the US. They're just even worse with criteria. I've heard from my American cousins that it can take 5 years to get through and they always turn you down fist try. But please, do try if you need it.
If u get higher rate mobility pip u are also entitled to a completely free bus pass which is extremely helpful
You can also get one if you get 10 points for mobility in my area (which is standard)
8-11 mobility points is standard and the free bus pass is nationwide. Reduced underground travel, CEA cinema card, discount on ferry crossings and free Carer tickets to attractions.@@HannahFrostFreespiritedwarrior
I think that depends on your area.
I completed the PIP and the work capability assessment form on my own as i had no support. Lets just say f***. That is the hardest thing in yhe world. The assessment for pip i managed to get support for the interview and that was a great help. Im waiting to hear the result.
The work capability assessment ive had two assessments. One with a nurse thst couldn't do it because off an illness ive got. The second one was a telephone and 1.5 his computer broke and got told i have to do it all again.
I totally agree pip and the work is run by the DWP and like the government nobody talks to each other. If you get one you should get the other.
Im so happy that you managed to get the support you needed.❤
I have just been through pip re-appraisal I found it devastating, humiliating having to talk about the things you are trying not to think about that make your life difficult and ending up in tears, I have had support fron a neurologist in with me during the appointment and the whole process is horrendous, I can imagine that it can push people over the edge as it nearly did me, thank you for this video and you absolutely nailed every aspect of it👍🤗🤗🤗
Filling PIP forms brings back all the past back and all bad emotions...there is no, yes or no question, Be aware you have to tell them all about your struggle. I cried and cried and I cried. I just had a telephone assessment with healthcare professional. Awaiting results.
It makes me laugh when people imply pip is easy to get by faking illness. I bet people to try. They're so tight with the criteria, people who are disabled with proof, slip through the net. Apparently, the level at which fraud happens is under 1% of all claims. Under 1%
If you get pip, you had evidence ect
Always record them. Obviously tell them beforehand.
thank you for uploading this - I look to your videos not for guidance really but companionship, someone who understands what I'm going through. The system is absolutely made to deter people from pursuing the benefits, it's scummy and not a nice world view to be subjected to but it's just how it is for us disabled folks rn. I've been stuck in bed since October 2022 now and it's very isolating (Drs have no idea what it is yet... possible MS, EDS, or ME/CFS). I was already on LCWRA Universal credit due to autism and anxiety before all this, but since I've become physically disabled we are applying for PIP now.
My form was sent 6 weeks ago and it really is such an anxious wait! But I had someone from a financial charity sit with me and write it out for me and that was a huge help. So advice for anyone reading this: if you don't have a supporting loved one to help with the form, I highly recommend reaching out to your GP or citizen's advice so they can send you to a charity who can help! I must say I have applied for PIP 3 times before this due to mental health and autism, each time I did it completely alone and each time I was rejected with a score of zero - and yes, the assessors always lied in my reports. Saying 'you said you can't do this, I decided you can do this unaided' -_- Here's hoping this time it's different
It's a disheartening system for a difficult life, but thank you for your transparency - I hope this video will help people before they've gone through as much uninformed hassle with UC and PIP as I have over the years. (Sorry for the essay!)
Love the video as always one tip I have to give is keep a copy of the form u filled out so when u have to apply the next time you can just copy over what you said the last time this has helped a few friends of mine out.
On doing it a second time the advice to me is not to copy what you did before but to reaffirm it as in I still have trouble walking or pain is worse for example. This was by a local group that helps you or will fill out the forms for you. It worked for me and they will not ask me again for a few years. I asked if I could just copy or put no change and they said if I did the claim could fail.
this is so helpful! ive been wanting to apply but was confused about how it works
The making it hard bit isn't about screening out people who don't deserve it. It's about not paying people who do need it. The government have transferred 37 billion from disability benefits in 2010 to 2019 and gave it to the test and trace system that didn't work properly. Also UC has cost 15 billion to set up before they've paid anyone.
totally agree!
Yep agree.
I get PIP mostly for CFS/ME plus a few other conditions. What a nightmare it was filling out the form. I'm dreading my reassessment even though it will only be a light touch review. I'm skeptical any review will be easy!
I was lucky to be awarded though.
I have been needing PIP for years and applied for the forms maybe a dozen times . I never once managed to xomplete the form die to my condition. What you sre saying about the difficulty eith that process is so so true. I filled out the online version yesterday with the help of family. I recommend anyone who can to do rhis online as i was able to do it and save progress and edit answers. Im expecting the 15 week wait and then i guess now ill be ezpecting a call or something. Thank you for the insight on this and i wish you the best with your health.
hi i applied 1st time and got enhanced rate the highest ..i had a lovely lady who done assesment i was told i was awarde pip a week after ..and had my back pay the folling week all in all took 3 half months
Got turned down for the Universal Credit Work Related even though I have epilepsy and heart failure however in the meantime, while I wait for the UC mandatory reconsideration, I’m had my first PIP application approved no problems. 🤷🏻♂️
Rgere xonpl different,but still crazy how one says u fine and other ur not,😑
The PIP process is a complete joke, the assessors love to lie & they often dont give the right points... I was given 0, even all the way to the tribunal stage. You have to fight & when lose the tribunal, have to start the application process again, proper nightmare.
I applied for PIP about 10 years ago, I could no longer work, and I have to say that I was treated with courtesy and kindness all the way through. . I did not need universal credit as my husband was still working. I have always been treated well.
I recently got pip and now universal. I was lucky with pip and had a really easy application. However with universal it’s been very difficult and each application for the first three it was a repeat of ur not eligible till the end saying I was and it was so difficult for me to get there due to my disability so before applying make sure you have a fit note before u do ur application because I struggled to get a hold of my go for over a month and now awaiting the universal medical assessment
WOW WHAT A GODDESS ,, LOVE THE PINK HAIR
And this whole time until about 13:00 I thought you were talking about the UK version of university loans and stuff 🙈 and was confused with the „having to look for a job parts“
I originally typed up all of my answers. Couldn’t ask for an online form as I had that the first time (when they failed me!). As I had been failed the first time, I crawled to my local citizens advice office and they filled the form out for me based on my typed up notes. I had major surgery for endometriosis which has left me with daily bowel distress (a one hour MRI took almost 3 hours as I had to go to the toilet three times during that time!), chronic severe lower back pain (my womb was stuck to my bowels for 15 years as the endometriosis spread!) and chronic fatigue. I only leave for medical appointments where as soon as I get into the hospital they are bringing me a wheelchair as I am in too much pain and exhausted to move forward. They got my form on December 18th and a medical professional starting looking at my form on January the 17th. Now I wonder how much longer I have to wait to get an assessment and I hope that this time I have drowned them with plenty of evidence so they don’t drag me to thinks like appeal and tribunal.
I’m sorry you are going through very similar conditions to me regarding endometriosis, which has ruined my quality of life added the back/ leg pain and more. I’ve been contemplating whether I should apply for PIP like yourself because I’m worried with all the negative things I’m reading. Hope you’ve had some success with your application.
@@MA-hw7nl I got standard award in both until August 2026. CA thought I should get enhanced but I really don’t ave the energy to fight it.
ive tried claiming pip a couple of times now and been turned down every time, its utterly disgusting! ive been signed of with a few mental health problems etc for 14 years now so you would think that would tell you something. pip just dismiss your claims on things that are totally irrelevant. and yeah after having to fill out the form was seriously stressful on its own, then they want you to have an assessment over the phone which goes on for around an hour which is draining and degrading as they talk to you like youre an idiot. then for them to just send you a letter months later saying you dont qualify as you didnt get enough points. and what they listed were nothing to do with my mental health!
that’s so frustrating!! I’m sorry that’s your experience!!
Go to tribunal. 90% of tribunals win
I have cfs/me and plantar fascia and I’ve been applying for pip since 2019 and I never get it and I don’t understand why. I was on universal credit for limited capabilities and then 6 months into uni they took it of me and asked for my money back. I’m applying for pip again but I know they won’t accept me
In the US its social security and it is my 3rd time trying to get assistance.
We have had to put 3 months sick certs in to UC and still not received the UC 50 form so still waiting for the extra money it’s so frustrating!!
You can ask your work coach to request the form on your behalf, and you should expect to receive it within four weeks. If you don't take this step, there's a chance it may never arrive.
Hi there thanks for your video it was very helpful you have been very good in explaining things. Anyway I am new on this I have just been awarded with pip and I am writing for the reward letter if you could please explain this I mean after getting the letter what happens please 🙏
hi! not sure I understand your question?
💙
how did you convince them of your ME?
I was diagnosed with ME, but for PIP they dont seem to agree its so disabling.
thanks for the candid video. Its inspiring.
It's down to luck, really, as it depends on your assessor.
❤❤❤
Has anyone asked to record the Assessment? I’ve heard of some Assessments where they haven’t been honest about what the Claimant has said. Does it go against you if you ask to record the Assessment?
Also are current new Assessments in person or on the phone? I’m still waiting. I applied beginning July 2023
You are allowed to record. I wouldn't even tell them. If they don't lie, they'll never need to see it.
If you do tell them you are recording, they'll want a copy. Which is fair.
But you are allowed.
Still on legacy benefits, the evaluations that happened pre covid were traumatising and anxiety inducing. I had to essentially succeed in "doing well enough" points wise to be continue awarded ESA, as mine is mental health related with suicidal tendencies. it's sickened me how vile and appalling that is the way to be judged.
Hi I’m applying now and confused about how sometimes I can walk far (not with ease) and other days not at all. I understand that the award is based on points so what category would they even put that in lol?????
Mobility
Never put on your form, yes but or yes sometimes, yes if. You've just got zero points because you said yes. They don't read the rest of it, just say no. Take the form as your worst day and stick to that.
Wish I’d done that on my PIP over the phone review. Lost £256 a month!
I ring up the doctors, to get an appointment I just say "suicidal tendencies" they have to give you an appointment for that day regardless. Then when you go into the doctor, say you've got the flu.
It's absolutely bs, this is the same crap. You just say no to everything and then say you wake up suicidal and that's good enough apparently. It's vile how we are treated.
Do you automatically qualify for pip if you've been diagnosed with Aspergers? Anyone know?
I tried going through the process with a few crippling disabilities and got rejected on the basis that I can dress myself and feed myself on my own.. it's exhausting having to re-do the whole thing
Top Tip, Have an appointee apply for you, then you personally don't have to answer anything or attend an assesment! If your capable of making a call and asking for a form and describing your issue is an instant Fail, attending a assesment alone unaided is a Fail, Making it from the Entrance to the strategically places assesment room is a Fail, Engaging and Answering Questions with an Assessor is a Fail, Dressing appropriately is a Fail, The Face to Face Assessment is a Visual Test, the Pointless Questions they ask are nothing to do with the assesment!!! Think Very Carefully about why you think the Extra Cash will help you first but do bare in mind they already know your lifestyle and where you are and who your with every minute of everyday thanks to your Not so Smart Smartphone!!!!
I would say to your viewers record every phone call you have with pip. Because what you say or how your are speaking, thay say the opposite, I've have called them out on this and it worked out for me,, because some lie, God bless you and All ❤ and Hugs
great advice!!
Well what if you can not read or write then
Hi do you still get UC if you get pip and work 16 hours a week on minimum wage .
Yhh
Im in that exact position
what a lovely smile..keep up the good work
I HAVE BEEN ON DLA AND PIP SINCE I WAS 17 .. IM NOW 50 ... I HAVE NEVER HAD ANY MEDICALS IN MY LIFE AND GOT DLA INITIALLY WITH DEPRESSION AND ANXIETY ..RECENTLY MY MOBILITY WAS INCREASED TO HIGH RATE LIKE THE CARE PART I RECEIVE....THAT WAS DUE TO COPD AND ARTHRITIS .... I HAVE GOT ABOUT 10 PEOPLE PIP OR DLA ... SHOULD I START A CHANNEL TO GIVE TIPS ON WHAT YOU NEED TO SAY AND DO ...TO START WITH .. REMEMBER THAT IT IS HARD TO PROVE THINGS BUT BY NOT SAYING THINGS ,,THAT MAY INFER OR PROVE SOMETHING ELSE...BEWARE THAT THE BURDEN OF PROOF MIGHT BE IMPOSSIBLE ANYWAY...DOESN,T MEAN ITS NOT HAPPENNING
I had citizens advice help me.
Me too just filling in reassessment form would not do it without help and recording any interview as I have had the experience of being misrepresented on phone wen not recording and lost all then half of PIP mobility after MC - I have had a progressive disease for 30 yrs which is predictably getting worse?
Will Labour make things any better? Will PIP assesments stop for p with SDPayments..????
Only time will tell.
The ONLY FAMILY that aspires to live and breed on state welfare benefits is THE ROYAL FAMILY. 😢
are you single
Complain to boris and RUSHI SUNIK AND HIS BILLIARNE WIFE WHO LOOKS AFTER THE NHS