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DLA for 20 years and now 0 points on PIP!

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MrsWolfie2210
MrsWolfie2210 Community member Posts: 42 Courageous
Hey all,
I just signed up to Scope because I am soo furious and didn't know where else to turn. I've been on DLA for about 20 years because of my congenital disabilities (mild hydrocephalus & spina bifida) and anxiety, depression and chronic pain. After 20 years of them deciding that I really do struggle and that I really am in pain, the DWP have suddenly cured me - right in time for Christmas!

My DLA is due to stop on 13th November and I now have to call up and request a copy of the report. Already, from the letter that I have received, I can see some inconsistencies. I said I need help with toileting? I never said that! Also, apparently the fact I went to my assessment and got a taxi (which my husband booked) means I can plan and follow an unfamiliar journey? Go fugure!

Fortunately, very fortunately, I have a tonne of stuff to sell on Ebay and I've gone minimalist so I only buy what I need, I'm also used to white label food and don't drink heavily, smoke or take drugs so I think (hope) I will be able to make ends meet for now. Hubby also has a reasonable job and said he'd take more hours for now if needs be (he's such a sweetie) so hopefully we'll get through this relatively unscathed. I now have to go through the MR and potentally (probably) appeal stage too, so it'smost likely going to be a very happy new year for me- NOT!

Sorry for the moan, all

Helen x



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Comments

  • MrsWolfie2210
    MrsWolfie2210 Community member Posts: 42 Courageous
    edited October 2018
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    @Username_removed thanks for that. I've been writing up my MR letter today and I've taken each point and said what I agree with and what I don't. I think it's important to highlight where you agree as well as where you disagree,otherwise you do just like you're tearing the HP apart.

    In my points, I have mentioned that I have aids to help me with life, and what activities they help me with. For example, it's more than just "needs help with..", I have a grab rail and step to get in and out of the bath, without it, I cannot shower at all. I have mentioned my adapted knives and cutlery under the 'prepring food' activity and pointed out that the fact that my husband was in the room with me was the support I needed to get through my assessment. I was tempted to take my adapted knives with me so that the HP could see them for herself but I gathered they might not like it too much if I pulled my "saw" out on the Maximus staff  :D 

    Helen x

    ETA: Trouble with getting face to face advice is that I'd need support to go and get it and hubby and Mum work full time! I'm going to write to my GP and ask if she can't throw any weight into things and i will include a copy of my diary (which I wrote before my F2F and she never asked to see) in with my letter. Here's hoping.
  • deb74
    deb74 Community member Posts: 814 Pioneering
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    hi mrswolfie2010. i also have spina bifida and hydrochephalus along with scoliosis and also cervical and lumbar spondylosis. i have been on pip for a couple of years and due to a shoulder injury was on esa. i went for an assessment and my esa was stopped 6 months after i had an operation on my shoulder. at the assessment i was also asked questions about my daily living which had nothing to do with me being on esa. I was awarded 0 points. the assessor basically decided there was nothing wrong with me. when i got a letter about the assesors decision i phoned up to check that my pip was safe. the assesor had made me out to sound like a liar. my actual pip assessment scored 8 points. i need aids to help me round the house and i quite often struggle to walk very far and have to keep stopping when i do walk due to significant pain. losing my esa was a nightmare! i had to go on the dole. I don't understand how they can stop you getting pip if you get dla. it should be a straightforward transfer from one benefit to the other. i hope you sort things out!
  • MrsWolfie2210
    MrsWolfie2210 Community member Posts: 42 Courageous
    edited October 2018
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    @deb74it's ridiculous! FWIW, my full medical history (if you're really interested) reads:

    • Mild hydrocephalus, arrested, non-shunted
    • Mild spina bifida
    • Mild scoliosis
    • Mild cerebral ataxia
    • Mild low-tone hearing loss
    • Endogenous depression
    • Generalised Anxiety Disorder
    • Chronic Regional Pain Syndrome -Type 2 - Causalgia
    • Obsessive Compulsive Disorder "traits"
    • Post-Traumatic Stress Disorder "traits"
    It's quite a list!

    I agree that it should have been a straight-forward transfer. Hydro, SB, scolio, ataxia & LT hearing loss are congenital, depression, anxiety were diagnosed in 1998 and the CRPS in 2001. I'm on ESA in the Support Group myself and I went through that with flying colours. The nurse just basically asked if I had suicidal thoughts because of my depression, noticed my hair was messy and my nails were a bit mucky and signed me off! It makes no sense at all! 

    Not sure why you're on the dole if you still have SB & hydro and need adaptations, did you go to appeal?

    Helen x

  • deb74
    deb74 Community member Posts: 814 Pioneering
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    hi mrsWolfie2210. i dont usually list my problems because i feel i sound like a hypercondriac but here it is. hydrochephalus, spina bifida, scoliosis, cervical and lumbar spondylosis, epilepsy, me and oesteoarthritis in my hips, and knees. my pip was not the issue i was awarded pip straight away after my assessment. it was my esa that stopped. i was told at the assessment that as long as i could lift one arm above my head i was well enough to work. i lifted my left arm above my head nut that wasn't the arm i had the operation on. i couldn't lift my right above elbow hight but he didn't care. i did appeal but heard nothing! i have now signed off the dole and started working for myself. i run a gift shop. i have always had problems keeping jobs due to my hydrochephalus amongst other things. the easiest thing for me is to work for myself and not have to worry about people moaning at me or laughing at me because i find a something hard to do.
  • poppy123456
    poppy123456 Community member Posts: 57,052 Disability Gamechanger
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    Hi MrsWolfie2210

    I'm sorry you're going through all of that but please remember that PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activities.

    Good luck with the MR and Tribunal, if you get that far and most do. If it gets to Tribunal appearing in person will give you the best chance of a decision in your favour. Even better if you have a representative.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • MrsWolfie2210
    MrsWolfie2210 Community member Posts: 42 Courageous
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    @deb74 funny you should say that, I've been considering self-employment too, Couldn't work in an office (anxiety) but I've wondered about going self-employed as a writer. I get a LOT of comments on my writing style so maybe.. just maybe, who knows?

    Helen x
  • MrsWolfie2210
    MrsWolfie2210 Community member Posts: 42 Courageous
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    @poppy123456 thankyou, I'm hoping they'll settle at MR level. I'm going through and just picking out the points where I feel I have the strongest case ie needing an aid to bathe & shower, need and aid/assistance to put shoes and socks on, help preparing a meal as well as needing support on unfamiliar journeys and can't walk more than about 150m without severe pain. Having looked at everything tonight, I've decided that, even if they say standard rate both, that will put me back on the £319.80 DLA (although, obviously, now PIP) that I was receving. If they decide that at MR level, even if they review me in 3 years (nothing will have changed) I will be comfortable, and happy. \Even if they only say SR care, I will settle because £20 a week down is not the end of the world. I'm not going to aim for the big figures because I don't think I'm entitled to it or need that much help. I answered yes to some questions which should have been no because I wasn't sure on what they were asking (ie managing therapy, my husband helps me go over CBT therapy notes but apparently because I'm not under a MH Team I get a big fat 0). I started off awarding myself 25 points and I've now whittled that down to 8 at worst and possibly 12 at best on care and possibly 8 on mobility.. Those are strong point descriptors. Like I said, even if they only put me on standard rate for both or only care, I'll settle. Standard rate on care or both that I know I am entitled to is better than nothing at all.

    Helen x
  • poppy123456
    poppy123456 Community member Posts: 57,052 Disability Gamechanger
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    When stating which descriptors you think apply to you and why, you need to back that up with 2 or 3 recent examples per points scoring activity of what happened last time you did that activity.

    For example, when preparing food, what's happened previously when you've prepared and cooked a simple meal on your own? You say you need support on unfamiliar journey's. What would happened if you were out alone in an unfamiliar place? Give examples of real life things that have happened to you that last time you did that activity alone.

    Managing therapy, scoring more than one point is only possible if the therapy takes place in your own home and it's prescribed or recommended by a registered doctor, nurse, pharmacist or health professional regulated by the Health Professions Council. One point is possible for needing to use an aid or needs prompting/assistance for taking medication.

    If the MR decision remains the same and most do then 71% of those who appear in person at their Tribunal have a decision in their favour (if represented) around 51% if not represented. Good luck.



    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    @poppy123456 thankyou, I'm hoping they'll settle at MR level. I'm going through and just picking out the points where I feel I have the strongest case ie needing an aid to bathe & shower, need and aid/assistance to put shoes and socks on, help preparing a meal as well as needing support on unfamiliar journeys and can't walk more than about 150m without severe pain. Having looked at everything tonight, I've decided that, even if they say standard rate both, that will put me back on the £319.80 DLA (although, obviously, now PIP) that I was receving. If they decide that at MR level, even if they review me in 3 years (nothing will have changed) I will be comfortable, and happy. \Even if they only say SR care, I will settle because £20 a week down is not the end of the world. I'm not going to aim for the big figures because I don't think I'm entitled to it or need that much help. I answered yes to some questions which should have been no because I wasn't sure on what they were asking (ie managing therapy, my husband helps me go over CBT therapy notes but apparently because I'm not under a MH Team I get a big fat 0). I started off awarding myself 25 points and I've now whittled that down to 8 at worst and possibly 12 at best on care and possibly 8 on mobility.. Those are strong point descriptors. Like I said, even if they only put me on standard rate for both or only care, I'll settle. Standard rate on care or both that I know I am entitled to is better than nothing at all.

    Helen x
    Help preparing a meal - you need to break that right down to what help and why. I said I could make a sandwich at a stretch but preferred to buy prepacked sandwiches for lunch as it is easier and safer. I got no points. In truth I would probably not bother with lunch if I am on my own if I didn't have pre packed snacks. I should have said that. I live with my son. I cook with him. I should have said that. Not, can you heat food up in the microwave. Yes I could but I probably don't most of the time. ( so okay you can cook). Get my point? Same goes for support on unfamiliar journeys. I did get points for familiar journeys, because I was very clear what I can and cannot do, I told them about a real journey I make most days, how far it is, how I break it down and take rests for my anxiety, know where the lamp posts are as markers, where the benches are, how many minutes it usually takes, how many minutes I can cope with and how I can call for help using my mobile and folk know where I am because I take the same route every time, etc.I think you should get face to face advice or go on a reputable help website mentioned on scope to get the most up to date accurate info. Good luck
  • deb74
    deb74 Community member Posts: 814 Pioneering
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    MrsWolfie2210. it seems more disabled people than able bodied become self employed. it gives you the freedom to work at your own pace and if you are having a bad day there is no-one to push you. it can be very stressful but it is worth it! 
  • MrsWolfie2210
    MrsWolfie2210 Community member Posts: 42 Courageous
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    @poppy123456 thanks for that. I have a diary which I kept from before my assessment and can update. Do you think it would be worth including that? HP never even looked at it!

    Helen x
  • MrsWolfie2210
    MrsWolfie2210 Community member Posts: 42 Courageous
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    @deb74 when I was a little girl. I wanted to be a forensic scientist, I never once dreamed that I could be a writer. I was led to writing by my therapist in 2014 and I hated it at first, it's now become the antedote for anxiety. Anytime I need to relax I just punch out a page or two - it's not uncommon fof my journal entries to reach 8 pages, for one day! 

    I do have a bunch of content to put on my blogs and have thought about monetising them. The biggest problem with writing is the insufferable writer's block, of which I have been a victim numerous times!

    Helen x
  • poppy123456
    poppy123456 Community member Posts: 57,052 Disability Gamechanger
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    @poppy123456 thanks for that. I have a diary which I kept from before my assessment and can update. Do you think it would be worth including that? HP never even looked at it!

    Helen x
    You can yes, the DWP decision maker may not use it but the Tribunal will.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • MrsWolfie2210
    MrsWolfie2210 Community member Posts: 42 Courageous
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    @poppy123456 hopefully, just hopefully, it won't get that far. I realise that hope can be a dangerous thingbut you can't blame me for trying. I've had bad situations turn in my favour before, so I do keep everything crossed and take it one step at a time.

    Helen x
  • sue66
    sue66 Community member Posts: 124 Pioneering
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    Hi Helen quote "Also, apparently the fact I went to my assessment and got a taxi (which my husband booked) means I can plan and follow an unfamiliar journey? Go fugure!"
    How stupid is that, this is what you pay the taxi for, to get you from one place to another, you sit there, they do the driving, they chose the route and take you to the door, wheres the planning a journey come into it doh!

  • Yadnad
    Yadnad Posts: 2,856 Disability Gamechanger
    edited October 2018
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    sue66 said:

    How stupid is that, this is what you pay the taxi for, to get you from one place to another, you sit there, they do the driving, they chose the route and take you to the door, wheres the planning a journey come into it doh!

    Is it the actual planning or the planning that might need to happen?

    Say the taxi suffered a breakdown on the way and you knew that if you waited for help to arrive from the AA/RAC you would be late for the assessment. What would you do? Could you plan how you would get to the assessment centre on time?
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    That's very true, you should be travelling with a companion in that case.
  • sue66
    sue66 Community member Posts: 124 Pioneering
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    Yadnad said:
    sue66 said:

    How stupid is that, this is what you pay the taxi for, to get you from one place to another, you sit there, they do the driving, they chose the route and take you to the door, wheres the planning a journey come into it doh!

    Is it the actual planning or the planning that might need to happen?

    Say the taxi suffered a breakdown on the way and you knew that if you waited for help to arrive from the AA/RAC you would be late for the assessment. What would you do? Could you plan how you would get to the assessment centre on time?
    Yes they should have asked it just like that. Most of us could plan a taxi to pick us up and take us to our destination but personally if this was me id def need a companion, and if on my own which i wouldn't have been i know i would just panic if the taxi suffered a breakdown. Judging someone as able to plan a journey solely on the ability to book a taxi doesn't mean you could plan a journey in my opionion anyway. 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    Totally understand where you are coming from. 
  • MrsWolfie2210
    MrsWolfie2210 Community member Posts: 42 Courageous
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    Hey guys,
    Wow this has escalated a bit! Yes, the taxi situ is a crazy one to me, too. If the taxi broke down I;d be thrown into a full-scale panic. In fact, for me to get in a taxi at all on my own just wouldn't heppen because of my anxiety. I can plan an unfamiliar journey with no issue because that's just using a map, but follow it? As in manage the bus, car, train or whatever without crippling anxiety which would probably make me abort the journey? That's a no!

    Also, as a sidenote, I wouldn't book a taxi myself - I get anxious using telephones!

    Helen x
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