Hi I am MumblingPenguin — Scope | Disability forum
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Hi I am MumblingPenguin

MumblingPenguin
MumblingPenguin Member Posts: 8 Listener
Hi there, happy to find a place with like minded people. it's a bit tough going through on your own.

Comments

  • Ross_Scope
    Ross_Scope Posts: 4,971

    Scope community team

    Hello @MumblingPenguin

    Welcome to the community, I hope you are well. 

    Certain things can indeed be tricky to go through on your own, is there anything in particular you are struggling with at the moment? 

    You've certainly joined a very supportive and welcoming community, so I hope you enjoy being here!
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  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Hi @MumblingPenguin and welcome to the community 

    Feel free to join in or ask any questions you might like to visit our coffee lounge for general discussions 
    Here to help with my experience in hunan resources and employment rights 
  • MumblingPenguin
    MumblingPenguin Member Posts: 8 Listener
    Hi thank you for the replies. I am struggling with nearly everything at the moment. I find it very difficult to access any kind of help and I have been denied many other help as well.
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Hi 

    If you tell us a bit more about what support you are looking for we may be able to offer some suggestions 
    Here to help with my experience in hunan resources and employment rights 
  • MumblingPenguin
    MumblingPenguin Member Posts: 8 Listener
    Been diagnosed with Fibromyalgia and CFS last year after nearly 10 years of tests/ gp visits and so on.I have chronic pain, some days it is so severe i can't do much at all. I am still waiting for referral to pain clinic, GP says long waiting list and that's it. Nothing else. I also get no medication for any pain. I am not entitled to benefits, don't get nay help with other medical issues. Been trying to find pt work for a long time, but due to illness cannot do very physical work. The list goes on :(I have been unwell for many years, but it seems there is no help available at all.
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Sorry about all your issues 

    Why are you not entitled to any benefits ? Have you tried using a benefits calculator to check there is one on here under benefits section 

    Have you tried applying for pip at all again you can read in the pip section about the descriptors and if you may be entitled 

    Unfortunately there are huge waiting list for any NHS services 

    Have you tried looking into alternative remedies like massage , herbal remedies,  meditation, hypnosis 

    I am sure others may advise there are lots members here with fibro 
    Here to help with my experience in hunan resources and employment rights 
  • MumblingPenguin
    MumblingPenguin Member Posts: 8 Listener
    I have been denied any benefits due to partner working, they put me on a legacy (JSA) benefit 3 years ago but I get no payment. I asked several times about help with the disabilities, they told me I am not entitled to anything. I only recently found out about PIP, I looked through the information, but its very confusing. I also read the horror stories about it, people who get denied PiP. I also have no one that could come with me to any assessments and they said that if you go alone they will make sure you won't score any points. I checked the benefit calculator but it is not that clear. It shows I should be entitled to sometimes, but DWP has told me I'm not. In 2018 they put me on this Health and Work programme ( this was voluntary as I was just on jsa) and that was a complete waste of time. I was stuck with an external provider for 15 months and they did literally nothing there. After that back dwp, then Covid happened, didn't hear from them until 4 weeks ago, they said they going to call me every two weeks, but never do. I have 0 income, trying to find suitable work and there is simply nothing at all.
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    There is a job support programme on here in the emoluments section that may be helpful 

    Regards to pip you have nothing to lose by applying and don't read all the horror stories people who don't get awarded are bound to give a negative account 

    Most assessments are still being done over the phone rather than in person . You don't score 0 points just for going on your own bit it does show a level of independence.  Could your partner not go with you ?

    I would suggest looking into pip more  
    Here to help with my experience in hunan resources and employment rights 
  • MumblingPenguin
    MumblingPenguin Member Posts: 8 Listener
    Partner works 6 days a week, from early morning till late afternoon. I would have to go on my own there if they need to assess me in person. This is just one of the many things I struggle with. I hardly leave the house these days due to mobility issues and pain.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,560 Disability Gamechanger
    Hi @MumblingPenguin -  as a penguin lover, I rather like your user name. :) As far as PIP goes, most people are successfully awarded, so you only see the stories of those that have not been awarded on the internet, which gives a biased view. If you do decide to put in a claim for PIP, there are members here on the community who would be able to help & advise.
  • MumblingPenguin
    MumblingPenguin Member Posts: 8 Listener
    Thank you, that is very much appreciated. How does one start a pip claim?
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    You would get notice of assessment so maybe your partner could request some time off to take you 

    But as I said before most assessments are still being done over the phone so I wouldn't let thus put you off 
    Here to help with my experience in hunan resources and employment rights 
  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    You just call the pip helpline 0800 121 4433. 
    Here to help with my experience in hunan resources and employment rights 
  • MumblingPenguin
    MumblingPenguin Member Posts: 8 Listener
    Thank you, will do that asap. 
  • Cher_Inactive
    Cher_Inactive Posts: 4,414

    Scope community team

    Hello from me @MumblingPenguin I'm another fan of your username!

    I'm sorry to hear you've had little support up to now with your impairments.  PIP is definitely work exploring, if you can evidence that you struggle with the mobility/daily living activities you would be assessed against because of your conditions.  We'd be happy to offer more support to help you fill in your form if you needed it too.  

    Also, Scope have a free service called Support to Work that helps people in England and Wales who are interesting in finding a job.  You'd have access to a friendly advisor who would give you 12 weeks of support online/over the phone, focused around:
    • identifying your strengths and transferable skills
    • developing confidence and job skills like time management
    • reviewing your CV to meet your employment goals
    • how and where to look for jobs
    • mock interviews
    • how to talk to your employer about your impairment and reasonable adjustments
    To learn more and look at applying, visit the Support to Work link above.

    While you're here, you might like to browse our invisible impairments category too to read other people with fibromyalgia/CFS stories and questions.

    It's lovely to meet you and you know where we are if you need us.  Take care and speak soon.
    Online Community Co-ordinator

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  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,560 Disability Gamechanger
    Hi @MumblingPenguin - the above number is for the PIP enquiry line. This is the one needed for PIP claims: 0800 917 22 22 Please see: https://www.gov.uk/pip/how-to-claim

  • janer1967
    janer1967 Member Posts: 12,290 Disability Gamechanger
    Sorry for the wrong number fingers crossed if you decide to apply 
    Here to help with my experience in hunan resources and employment rights 
  • MumblingPenguin
    MumblingPenguin Member Posts: 8 Listener
    Thank you all for your help, I have not called yet, will do tomorrow or Monday, I am gathering the things needed first and reading through the form you get send eventually. I will also check the other sections of the site and forums,.

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