Positive experience (PIP & ESA) — Scope | Disability forum
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Positive experience (PIP & ESA)

Si_Obhan Member Posts: 34 Courageous
I came on here to look for advice on returning to education, and also pain relief... but I’ve seen a lot of posts about ESA and PIP and people making claims like “you won’t get mobility if you can get out of bed”... probably just out of frustration with the ‘system’.

I just wanted to share my experience and perhaps give hope to people looking for info or advice. I know it would have helped me hugely if I could see even one story where everything fell into place and nothing went wrong. Instead I found a lot of doomsaying which made me extremely anxious. I am not downplaying people’s experiences and I know you are more likely to write about it when it’s a negative experience because you need help or support to put it right.

This also isn’t some kind of humble brag. I’m just genuinely concerned when things go so wrong for people as that wasn’t my experience at all.

PIP - was awarded while I was working full time. Both components, enhanced, for 10 years/ongoing. I had a home visit automatically due to using a powered wheelchair and my local assessment centre being inaccessible (narrow corridors, no hoists etc).

I do think I would have scored more points than I did but I think the assessor was possibly under pressure to give the bare minimum, but the points I got still allowed for the maximum award. Some of the statements I didn’t agree with either (I asked for a copy of the report before decision as negative things online made me fret needlessly). For example where I am diagnosed with Esophagal dysmotility and in my hospital notes it says they give me those Wiltshire farm foods meals (bork) to prevent choking - which is true. I don’t always manage my condition very well and inhale food I shouldn’t be eating because mush gets boring after a bit and one day soon I won’t be able to eat so I’m enjoying it while it lasts. The HCP wrote that there as a graze box on my coffee table (not mine) and if I can eat raisins and nuts then I don’t need supervision to eat. So yeah, I didn’t agree with some points but it wasn’t terrible or lies, more incorrect assumptions. Some of it I felt was put in to just bulk out the notes to be honest. I didn’t record it and felt no need to really.

ESA - support group, no recommendation for review, no face to face. Based on automatically qualifying as I can’t walk at all. They did actually call me for an assessment so I rang to ask if there was an accessible bathroom in my chair... I casually mentioned that I’m surprised they didn’t have enough info because I should automatically qualify. The manager happened to be with the receptionist and recalled my file. They cancelled the face to face saying they have enough info. The decision was made within 4 weeks of applying and I had to actually wait the rest of the 12 weeks to start getting support component.

It’s been 1.5yrs now and I’ve had no problems at all. My only real “issue” was being able to type up the ESA form which I could do but I can’t hold a pen to do the PIP one so someone had to do that for me when I’d rather do it myself.

The only advice I can offer is to read the descriptors and see if they apply to you. In my case if they didn’t then I didn’t bother wasting space on the form about it. I didn’t put anything about stairs or anything they can’t asses you on. It was very “to the point”. For example I can plan and follow a journey so I knew I would get no points for that. I barely mentioned my diagnoses in writing about activities, I just put why I have to do things a certain way. I am pleasantly surprised by the whole process to be honest. Also I did ask for the ongoing award for PIP in the extra part at the back. I wrote the legislation and said that I feel it applies to me and if it doesn’t please can they explain their decision... so didn’t leave any option really.

I am now looking to go back to college and back to work after an impending op. Hopefully I’ll never be in in this position again with my health this bad but being able to pay rent and have enough to live off is the least of my worries thanks to how smoothly everything has gone, and that’s the way it should be. I wish that for everyone in this position xx


  • anisty
    anisty Member Posts: 173 Pioneering
    It is great to hear a positive experience like yours and definitely a real boost to people like me. Im not disabled myself but act as an appointee for my son so I feel i owe it to him to get the help he cant access himself.

    We arent as far along with our journey as you are but we have started well with him getting LCWRA group with no face to face and quite quicky too.

    He could have been eligible a while back but i had seem the film 'I, daniel blake' which isnt a documentary but based on truth of claiming UC and when i saw what daniel blake was expected to do by the job centre i thought 'not a chance!!'

    Luckily, my son's support worker knew how it all worked. 

    His pip application hasnt completed yet but he has avoided face to face.

    It sounds like you really understood the descriptors and i think that really helps a good outcome. It really isnt a fair system at all for anyone who is struggling with form filling because it is very daunting and it is so easy to misinterpret questions or not understand the descriptors.

    If they decide my son doesnt need an appointee at any point, there is not a chance he would get through the system with the right result as he is not able to articulate his needs. The system is very unfair really but it is good to know in can work for a few people.

    And, i do agree it is hearing so many stories of failed outcomes that cause even more worry and stress.

    So a good story is nice to hear :)

  • Si_Obhan
    Si_Obhan Member Posts: 34 Courageous
    @anisty I completely agree about it being unfair. I consider myself very fortunate that I am able to look up and understand the information I need. My illnesses are mostly very much physical which is an advantage I think. I read a lot so read the decision makers guide etc back to front, and because of my anxieties I prepare for the worst which meant before I agreed to resign from my job as advised by my doctor, I had already worked out how much we would receive to the penny and how I was going to sort it. I know for a fact my husband for example would not be able to do that himself and end up in a mess because of his asd. I think that is where the process is letting people down.

    My heart goes out to everyone who has to appeal only to be told that they should have been awarded. At no point did I feel I was on trial or that I had to prove my illnesses etc and I don’t know if I was just very lucky.
  • janer1967
    janer1967 Member Posts: 16,531 Disability Gamechanger
    Thankyou for sharing this positive story with us, it is always nice to hear good news. I agree there are a lot of posts on here detailing the struggles people go through, but that is to be expected as people come here for support and advice.

    Its not often people who have no struggles with claiming benefits seek out a forum like this as they don't need the support or advice. But we do offer lots more than just benefit advice as you know.

    But it is important that we share good news as well as it encourages others that there can be a positive outcome  

  • cristobal
    cristobal Member Posts: 984 Disability Gamechanger
    @Si_Obhan - good to hear a positive story...

    You went the right way about it I believe.

    Find out what PIP is about. Read and understand what the activities are, and in which areas you might score points.

    Apply giving examples.

    Keep it brief...

  • anisty
    anisty Member Posts: 173 Pioneering
    I do think it is cheeky of them to make assumptions like they did about your graze box. I mean, they could have at least asked you about it. Your explanation sounds perfectly reasonable to me, im sure if the outcome of your award had been less favourable, you would have been really cross about that.

    I suppose they are bound to cast an eye about just to see if everything fits but i dont think this way of assessing is great tbh.  Asumptions cannot really be considered evidence based assessment. With something as important as this, they really should be making sure the facts are correct.

    It is great you got such a long award too! Very well done!
  • Si_Obhan
    Si_Obhan Member Posts: 34 Courageous
    @anisty you are right and I never thought about it that way. If it hadn’t been awarded I probably would have been annoyed by the assumptions. If I’d had a visit at an assessment centre they wouldn’t know anything about my home except from OT reports. My thoughts at the time were do I care enough to correct that statement. I guess that because it was awarded anyway I wasn’t bothered but in other circumstances it could have been the difference between an award or no award.

    I think it probably helped a bit that I was just explaining about blood vessel fragility and as I was talking my nose started bleeding everywhere for no reason. That was noted down as well and I felt they were overly thorough in capturing the effects of my condition so it went both ways. Some things I didn’t bother putting on the form but they wrote down and used it to justify awarding the points. 

    I don’t feel like I necessarily had a good rapport with them, in fact I was worried that she was a bit funny with me at times. Again that’s something I can brush off but for someone like my husband that would completely throw him. What a minefield.

    I really hope everything goes ok for your son ? 
  • cristobal
    cristobal Member Posts: 984 Disability Gamechanger
    edited February 2020
    "If it hadn’t been awarded I probably would have been annoyed by the assumptions..."

    @Si_Obhan - this is the one thing about the PIP assessment that really 'gets my goat'..

    I purposefully kept my application to the point, and edited out anything that didn't directly address the activities.

    Yet I was asked dozens of questions such as "What do you use the computer for?" (my assessment took place at home ), "Do you do the washing", "Do you ever do the washing up?" "When do you usually walk the dog?" Many more.

    I'm 'assuming' that the questions that were not anything to do with my application were being asked 'laterally' to make sure I wasn't on the fiddle and if I said that I could do the washing up it would be used to tick a box in another area. Either that or just really appalling interviewing??

    Other assumptions - I can drive a car so can pay for fuel at a kiosk; I can read so I like Shakespeare(!), I can walk as far as the church so I must be able to walk back...

    If you want to know something the best way is just to ask - if you assume it's makes an 'ass' out of 'u&me'...

  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,779 Disability Gamechanger
    I had fair and positive outcomes for both PIP and ESA, my OH had a fair outcome on PIP and her review in December was done over the phone by the DWP decision maker resulting in no change to the award.
    But I realise that not everyone gets the award they they they should get and that the system is too much of a lottery.
    Be extra nice to new members.
  • Si_Obhan
    Si_Obhan Member Posts: 34 Courageous
    @cristobal gosh, I think if they were going to just assume so much stuff about my lifestyle from my home in some ways I would prefer a face to face assessment if I could physically get there. My husband is physically able to drive but can’t manage with money so if he drove he wouldn’t pay at a kiosk reliably. He’s the only person I know who can go to the shop, pay for a bag of shopping and then if a large group of people come in and get in his way while bagging it he has left the shopping behind by accident and only noticed at the front door. I’m not mocking him I just think maybe mental health is not fully understood by some assessors. Being able to do one thing isn’t evidence of another. I hate that this happens to people. 

    I know that when I mentioned questions about my work when requesting my assessment report the lady quoted something at me about “functional assessment” so basically anything they ask is relevant. That’s a bit vague and open to interpretation, but I can understand in some ways - for example I’m sure that if I’d been able to hold a pen easily it may allow them to decide whether I could use regular cutlery.

    I remember (this was before I had the decision) asking why I had been quizzed about my job when PIP is not to do with work. I was told that because at the time I was spending most of my life either at work or travelling to and from it was completely relevant. Fortunately my HR reports in my evidence explained about my buddy who made drinks for me and helped in the bathroom so that explained how I managed while at work. My manager mentioned my “pen graveyard” jokily and documented accidents I’d had at work before I had the adjustments in place. 

    The more I read I’m thinking I had a combo of excellent evidence from my consultants and everyone else I’m lucky to have looking after me, knowing how to fill the form in and just lucky when it came to the assessor. 
  • poppy123456
    poppy123456 Member Posts: 31,451 Disability Gamechanger

    Thanks for sharing your experience for both claims. It’s certainly lovely to hear positive stories which are obviously few and far between on an Internet forum. People automatically assume that everyone gets refused first time, this isn’t true.

    Both myself and my daughter claim PIP and never had any problems. I also claim ESA and have been in the support group since 2012/13. Never had any problems there either.

    Never had a bad HCP either, in fact they’ve all been extremely nice and very helpful. All reports have been honest too, which is nice to see. 

    Obviously not everyone will have good experiences and not everyone will qualify. Personally coming on an Internet forum is probably the worst thing someone can do when claiming those benefits. I didn’t go on one forum when I first claimed them and I’m glad I didn’t because my nerves couldn’t take reading so many negative stories. 
  • Si_Obhan
    Si_Obhan Member Posts: 34 Courageous
    edited February 2020
    Thank you @woodbine and @poppy123456 I’m glad you had mostly positive results. That’s at least 3 people :) well 6 if you count your family members and my husband too (he got the lowest award but that’s exactly what we figured from the descriptors so he was happy with that).
  • anisty
    anisty Member Posts: 173 Pioneering
    To add to the positive vibe on this thread, my son attends a centre for autistic adults and I personally know 4 people there that sailed through the process and got awarded no problem.

    So there you go, we are up to 10 now  :)

    This is really encouraging too because, apart from a slightly altered gait, (which isnt actually at all obvious unless you know to observe for that) all the people i know that have been awarded look 'normal'

    Whatever that is!
  • cristobal
    cristobal Member Posts: 984 Disability Gamechanger
    Whilst we're all surfing a wave of positivity - which is brilliant - can I add to my post above (about my annoyance with assumptions being made)..

    I asked DWP to look at some 'corrections/ that the assessor had made to the report so that it was accurate. They did and I was happy - that was all that iI wanted.

    The chap on the 'phone at DWP  said it looked like I might be due a higher award and that i should ask for a MR. I said that wasn't what I wanted. He said that, either way, he was going to ask his manager to look again as it wasn't right...

    So I got 'upgraded' - thanks to the DWP!
  • laurapeach
    laurapeach Member Posts: 104 Pioneering
    I want to add to the positive thread just so people who are anxious or worried about things can see some positive outcomes too. I have ME/CFS and I was awarded LCWRA a week after my assessment for UC. The HCP I had must have known a lot about my condition as she was practically filling in the answers for me before I even mentioned certain symptoms, she just asked me if I was experiencing such and such and then asked how much it affects me. I think there are some really genuine HCPs out there who want to help and make sure people get what they rightly deserve.

    I have my PIP assessment coming up (no appointment yet) but I am hoping for a similar HCP who might be understanding of everything too.
    Mum of one, I have M.E/CFS, POTS, Central Sensitization Syndrome and Joint Hypermobility Syndrome.
  • Cressida
    Cressida Member Posts: 982 Connected
    @Si_Obhan thank you for posting your story. It's really helpful and will let other people going through the system know that it can be a positive experience. I was awarded standard care on the first attempt after years of thinking I wouldn't be entitled as I still managed to work. I was nagged into applying by a work colleague who knew I was struggling. I dont think I would have ever applied if I'd come onto the forum beforehand because of all the negative stories. 


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