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We won't be forgotten - share your experiences

Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,941 Scope community team
edited January 28 in Disabled people

An illustration that reads Share your experiences and We wont be forgotten

Are you disabled or know someone who is?

With the UK in recession, getting welfare and employment right for disabled people is more important than ever.

Join Scope's campaign for disability equality and share your experiences.

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Scope

If you have a few minutes to spare, we'd appreciate your feedback on our online community.

Replies

  • Parrot123Parrot123 Member Posts: 137 Pioneering
    I think the way the government has treated . Disabled people and unpaid carers. I'm a cancer patient kidney patient asthma. Full time carer. We get no support no help we have been pushed aside. I find this disgusting. Help Disabled ♿ now. UC claimints get extra £100 per month. Unpaid disabled carers get nothing wrong 👎. Will x
  • janer1967janer1967 Community champion Posts: 7,355 Disability Gamechanger
    I had a real battle getting LCWRA ended up at tribunal, at the tier I had become an amputee and no prosthesis and was housebound .

    In order to get out of the house I needed 2 people to carry me out due to access issues, yet I was found fit for work mainly because I vould self propel a wheelchair in the house.

    Have you ever tried self propelling outside up and down kerbs, hills tamps etc  maybe ok for someone young and fit 

    I canr believe that in the criteria there is no section for actually being able yo get out of the house or een if you can get out what do you do then, maybe get taxi but who is going to help you then get into your place of work etc 

    Was awarded at tribunal but this took over 12  months of stress being made to feel like a fraud, and at the same time coming to terms with tr disability and almost being homeless with my young son to look after too

    What they put the disabled through is barbaric, however I understand they need to ensure it is all genuine. Which does amaze me as I know several people who have claimed these benefits for years for conditions that dont really affect their daily life 

    Anyway rant over
  • SeanchaiSeanchai Member Posts: 411 Pioneering
    edited October 2020
    My wife was/is my carer and has been for years now ....but she turned 65 and a half in January.  The DWP stopped her money as though she was my carer one day and a day later she is still my carer but does not get paid for it . She asked the carers centre for help to fill forms out but she is not now a " carer " according to everyone in officialdom . We managed to get put on the right path and advised what to do by "Poppy123456 " on this very site .
    We cannot thank her enough , we were even getting the wrong advice from the local DWP office ....and conflicting advice over the phone from the DWP. 
    We were able to claim UC ( not enough to cover our rent ) but it helped us. I have now sent my pension application in ...this must have got others looking at our payments and we now owe the UC money ...in January 2020 my wife turned 65 and a half ,so was entitled to her pension , we told them everything they wanted to know and the UC awarded us so much a month ( just over £230 ) . We got a letter saying we had overclaimed by £129 in January . I was very angry , not at the fact that we owed them money but the fact they said we had overclaimed ....it wasntgeir mistake and they seem to be blaming us . My wife phoned them today and paid them the money "they " overpaid us .
    I would love to have had a word with them but my hearing is bad and I struggle to make anyone out on a phone . I hope we are able to get off UC in January when I turn 65 . As for my " carer " ( my wife ) she is still doing an excellent job . ....and I might just keep her as my unpaid carer 😮🙂👍🏽🙏🏻
    Ps I might well have to call on the experts on this site as we were told by the DWP on the phone last January that we could claim pension credits ....but Poppy also kept us right on that as well by telling us we cannot get pension credits until we are both pension age . My wife mentioned to the UC on the phone today that we will be getting in touch with them  when I get my pension on January 9th 2021. ....and when would we best to tell them about my pension ? They told her that it would be best to tell them in December . 
    Last year at this time i had just had my home assessment going from DLA to PIP . which thankfully I was awarded PIP or ten years , I know I will not live that long but at least thats one thing we can forget about for now. ( another lot of help from Poppy 123456  to get that organised , then my wifes pension ,then our UC in January at the start of this year. . 
    We are just a number and even much more so with this government.... thank you all for your help over the year 👍🏽🙏🏻🙂
  • SeanchaiSeanchai Member Posts: 411 Pioneering
    I was so glad to see that Poppy 123456. got an award from the site for her stalwart work in helping so many people . She certainly took a lot of pressure of us by telling us the correct path to go down on my DLA to PIP then onto UC ....you never know Polly , we might need your help when I go onto my pension and if I would be able to claim pension credit ....or attendance allowance. These are things that are not automatically spoke about as far as I,m aware
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @Seanchai aww bless you my friend! Thank you for those wonderful and kind words! They really do mean a lot!

    Regarding the UC overpayment. Sadly, all overpayments are recoverable on UC, even if it was their error... sad yes but unfortunately, that's the UC regulations.

    When you start claiming your pension your PIP will continue and you will remain on that for as long as you remain entitled to it, you definitely won't need to claim attendance allowance.

    Anyway, i won't take over the thread anymore, if you need further advice anytime, you know where i am, always happy to help! :)
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • SeanchaiSeanchai Member Posts: 411 Pioneering
    Thank you Poppy ,  I hope the change over to pension is smooth in January. 
    I don,t mind paying back any over payment ,to UC. it was just the way the letter was worded tyat annoyed me , it looked like they were putting the blame on my wife and myself for the overpayment . On saying that , the lady on the phone ( from DWP) to my wife was very understanding and offered to allow us to pay it back in installments .Of course I will not be on UC from January ( I don,t think anyway ) .
    It's good to know we have someone with your knowledge on Scope that we can call on for help.
    Thank you for all your help ....and the understanding of the other experts ( and members) on Scope 👍🏽
  • Parrot123Parrot123 Member Posts: 137 Pioneering
  • Parrot123Parrot123 Member Posts: 137 Pioneering
    I really feel as if disabled people have been pushed aside during this virus. Matt Hancock help us please.
  • WilliamECWilliamEC Member Posts: 5 Connected
    I feel being disabled it is not just the government during this time but society also pushes us aside. I live in one town and socialise in another town which is 20 miles away or 30 minutes on the train as the town I live in do not seem to accept disability. It is a very eldery town and the school kids are the main ones who talk to me if they see me in town as they seem more open minded.

  • givingupgivingup Member Posts: 113 Pioneering
    Yes I don't understand why people on u/c get a £100 a month extra and disabled people get nothing extra? Disabled being ignored by government yet again!
  • newbornnewborn Member Posts: 655 Pioneering
    Sorry to hijack the thread, newborn here. Cannot find a way to contact scope.  I automatically  log in on the tablet so l have no idea what the password  is.  My tablet sometimes doesn't  work, so l want to log in on another device, but the l forgot my password button doesn't  work and emails dont either
  • Tori_ScopeTori_Scope Community Team Posts: 3,210 Disability Gamechanger
    edited October 2020
    Hi @newborn! I've seen your emails, and have sent a couple of replies. Have they not come through? Have you checked your spam folder?

    I'm sorry that you're still having trouble logging in. I'll try and manually reset your password now. Please check your emails, as I'll be emailing you the new password, and let me know whether you receive it :)
    Online Community Coordinator, she/her

    Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
  • newbornnewborn Member Posts: 655 Pioneering
    No replies. Nothing in spam.   The tablet is past it's  prime so l really need to get in via laptop.  
  • newbornnewborn Member Posts: 655 Pioneering
    It seems somehow my e ail and scope wont speak to each other.  I could give you an alternative email address but not on public forum.  If i merely send in to you from it, your system won't know it's me.  
  • newbornnewborn Member Posts: 655 Pioneering
    I am zure my emails from my usual address dont reach, because  not one has  een replied to. I tried using the reply option as a link,  for an old email from Adrian.  That was the moment  everything went strange on my email as far as scope is concerned,  
  • earthchild23earthchild23 Member Posts: 145 Pioneering
    edited October 2020
    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

  • Tori_ScopeTori_Scope Community Team Posts: 3,210 Disability Gamechanger
    Thank you for sharing @earthchild23 :) It's not offensive, honest experiences are exactly what we want to hear about, whether they're positive or negative. Did you click on the link in the post to write about your experience on there? 
    Online Community Coordinator, she/her

    Want to tell us about your experience on the community? Talk to our chatbot here and let us know what you think
  • Parrot123Parrot123 Member Posts: 137 Pioneering
    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    I have mental health illness and classify my self as having a invisible disability, becaus I am not able to do as many things as normal ‘27 y/o’ could I also am a parent, with my son who has been recently acknowledged to have SEN (social emotional mental health and cognitive and learning difficulties). 
    To society I feel we are not accepted as having a disability and have had to fight for support especially for my son. I feel when you have a mental illness you are looked upon as delusional and not accepted as someone with a physical disability as it can be seen. So that has been my main issue being recognised as disabled and now it’s the struggle of awaiting for a proper diagnosis for my son, as we have a lot of trauma issues from abuse with his dad my ex in the past. I also feel as a disabled person we are always made to explain ourselves to justify why we need support why we are entitled to PIP, LCWRA or ESA. I feel there’s still a lot of institutionalised discrimination that the government needs to look at for disabled people and make accessing support easier. And I think more people need to be made aware in society about how it feels to be disabled, the looks and comments you hear are upsetting 
    (Sorry for little rant, please remove if I’ve offended but I’m trying to be honest in how I feel about my disability) 

    @earthchild23 contact social services. Or try get a welfsre rights officer out. good luck Will x
  • Parrot123Parrot123 Member Posts: 137 Pioneering
    givingup said:
    Yes I don't understand why people on u/c get a £100 a month extra and disabled people get nothing extra? Disabled being ignored by government yet again!
    @givingup
    It's a disgrace i live in a village do you have a support worker? Aye u r spot on we have been ignored this pandemic has had a financial impact on my savings. Having to shop in Spar NO MSP's care about us. Boris telling people shielding to go back out. I don't think so i will stay in doors until i am convinced it is safe for me out there.
  • [Deleted User][Deleted User] Posts: 0 Listener
    I have Asperger's syndrome and various physical disabilties including Dyspraxia and spinal stenosis, the main problem IMO is lack of awareness of ASDs (Autism Spectrum Disorders) outside of those who need to know, for instance if I declare my AS on a job application, my application gets insta-binned.

    Completely illegal but as I said in the coffee lounge last week, I've been saying for years that the Equality Act isn't worth a dime because the government don't enforce it and probably never will.

  • feirfeir Member Posts: 396 Pioneering
    edited December 2020
    To the people wanting the extra £20 a week UC claimants get you can claim UC yourself to get it.
    You won't get paid for the first 6 weeks though and you won't get back pay for those 6 weeks.
  • lisathomas50lisathomas50 Member Posts: 3,053 Pioneering
    I have lupus and becsuse you cant see it prople think your putting it on my lupus has caused me to have a stroke mini strokes and heart attack I have survived and carried on I have had lupus since I was 18 I am now 58 but over the years I have been reported for haveing nothing wrong with me when I had a mobility car people saying that that I didn't deserve a car because they were new  no action was ever taken because I had alot of medical evidence and have since been awarded pip  with no end date I stopped having a mobility car and have the money instead and brought a second hand car  and things got better but since I moved to a village things aren't as bad as they were 

    I have always worked until now but always been treated badly because of my disability  as I have always found my own jobs  that aren't disability friendly so to speak I got sacked from my last job because I needed a cataract operation and they couldn't wait for me to have it done which I have had done four weeks ago  but then I got corona virus si havent worked at all this year which is why I am hopeing  scope can help me to do this 

    I have a blue badge  which I use  but still get parking fines because people don't look  and then when you appeal they come up with other excuse like you didn't display your badge properly  or they didn't see it displayed snd then parking set the bailiffs on you so then your bill goes up which has happend twice to me I just paid obe bsyliff off which was over 300 pound and now I have another baykiff chasing me and have to pay 20 00 a month owing 400 because I was late paying which left me in debt  and one time I put my badge in the window and I got out my car  and the traffic warden said to me I couldn't park in a disabled spot I said I was  displaying my badge  and the traffic warden said  that I looked ok to her  and didn't look  like i had a disability I was so upset I  got back in my car and went home 

    Some people can be realy cruel when they cant see your disability I still like to look nice and wear make up and not look how sometimes I feel I still like haveing a night out I still want to work  now I try and stand up for myself even if it is hard and try to help others  I am  who  I am you can either take me or leave me either way is fine by me now 





  • Ross_ScopeRoss_Scope Community Team Posts: 2,430 Disability Gamechanger
    edited December 2020
    The Festive Find present hunt

    image of the Christmas present for the festive find game
    Online Community Coordinator

    Want to tell us about your experience on the community? Talk to our chatbot and let us know.
  • 66Mustang66Mustang Member Posts: 4,304 Disability Gamechanger
  • Ami2301Ami2301 Community champion Posts: 7,142 Disability Gamechanger
    @Ross_Scope 1st present!
    Community Champion
    Disability Gamechanger - 2019
  • lisathomas50lisathomas50 Member Posts: 3,053 Pioneering
    Ross scope  i didn't even grasp that about the present  finding today lol I had so much else to do only now catching up 
  • chiariedschiarieds Community champion Posts: 6,896 Disability Gamechanger
  • GarzaGarza Member Posts: 100 Pioneering
    bit late to this party but I think as has been said before the disparity between the extra funding for UC claimants and people on " legacy" benefits seem to be a little unfair as everyones costs have no doubt increased, more heating, getting food orders from where you can etc 

    I know that many charities pressured  the chancellor to do something which I commend but I dont think anything happened with it, as we are now in lockdown 3 I wonder if another effort at ministerial level will be made? 

    Personally I havent faired too bad over the last year but i am sure there are many who have 

    On a more general note I do wish all of the disabled charities would combine behind topics like this to create a stronger and more united voice
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