Hi, my name is yme! — Scope | Disability forum
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Hi, my name is yme!

yme
yme Community member Posts: 6 Connected
in Start here and say hello!
I have multiple disabilities, physical, sensory and hidden. All cause problems individually but when combined become impossible to manage successfully. It is very frustrating and I believe that I create a lot of problems for my carers and health teams. 

Life can be cruel but I am doing my best to live through my troubles. I put on my 'smiley face' for the outside world. A consultant wrote to my GP saying that I obviously enjoyed being ill as I smiled....that to me was an insult. Not only to me but to all disabled people who put on a brave face to hide their pain and anguish. 

I often wonder what he would have written if I had cried.. .probably that I needed to be institutionalized because I couldn't cope!

Attitudes need to change and change fast. I never dreamt that at my age I would be unable to do the things I had planned for..I wish things were different but they are what they are and I'm trying to make the best of a bad world. 





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Comments

  • dody
    dody Community member Posts: 14 Connected
    Hi Yme, welcome to this wonderful website. I have only just arrived here myself, but have found many useful tips and wonderful people on here. You're right, attitudes to the disabled do need to change. A lot of the people we deal with do not, nor ever have had, the problem s and chronic pain we go through. Most of us try to put on a coping often smiling face for the outside world. Who wants to deal with someone (us) who continually has a frowning 'poor me' face on all the while. Consultants and medical practitioners have no right to make judgemental comments on our medical records that could easily come back and bite us! Anyway, on a happier note☺, welcome and come back often!
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hi @yme
    Welcome to the community! I completely agree with you and your consultants attitude is disgusting! You've come to the right place as we all are in the same position. Please let us know if there is anything we can help you with :)
    Disability Gamechanger - 2019
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  • yme
    yme Community member Posts: 6 Connected
    Thank you. I am currently reading about care packages as mine was reduced two days after a visit saying the family should do the cleaning, laundry and shopping. That socialising was not part of my package and that I would have to use my mobility components to pay....even though it goes direct to Mobility!  They reduced the hours without a new contract being drawn up and still not been done. 

    It is a total nightmare as the payroll company disappeared and my carers got bare minimum as couldn't estimate on last year's as money reduced drastically. I have just had six months payroll done, HMRC bills for unpaid tax (even though they tell payroll what tax is due) they coming out of my ears and now reported to TPA  as pension payments not made since January. Tried to explain that was unable to access the account as it was set up by the payroll company but they are still saying access your account! Infuriating. Then when got new payroll company, they refused then access even though they were told by me that they were taking over the payroll so had my authority to deal with the pensions as from now and when the NEST lady had sent them the firm's to complete, they said we can't add you to the account. It's a total nightmare. 

    Sorry for the long post and for it bring in your reply. 

    Hopefully admin will put this in the right area of discussion for me. Please...
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
    Hi @yme
    I wish I knew what advice to give you but I don't, I'm sorry. No need to apologise, post as little or as much as you want to :) The Scope team will be along tomorrow and will steer you in the right direction :)
    Disability Gamechanger - 2019
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @yme and a very warm welcome to the community. Thank you for taking the time to share this with us all. I hope you can use the community to get support and guidance on these things. Please let me know if there is anything that I can do to help and I look forward to seeing you around :)
    Scope

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