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

Crazyraven Member Posts: 18 Connected
Saw the ad on ITV, please I need help, I need others who have my disabilities!!,  I've got epilepsy, but it doesn't follow the rule book and I've had so many other 'suggestions', severe back pain since i was a kid, now 66, and have never had help NHS, I've had to go private in June I found out I've got spondylosis, stenosis, thickened ligaments, my spine looks like an S with two curves. and I'm struggling to understand what it all means., PTSD thanks to our violence in N Ireland.  Our NHS has recently admitted they're missing nearly half of their physios.  I am crazy with pain and seizures, used tove climbing the beautiful Irish mountains where I'd see ravens having such a good time playing in the air, they're what I want to be, free from all this.


  • Ross_Scope
    Ross_Scope Posts: 7,507 Scope online community team
    Hello @Crazyraven

    Welcome to the community, good to see you join us. 

    Good to hear you saw the ad on TV, and I'm glad you've found the online community. Sorry to hear of what you've been through, it seems like quite a lot and you don't appear to have received the support you need.

    It's a shame that you haven't received help through the NHS, do you know why that is? Have you tried going to a different GP to see if they can better help you? 

    Through your private healthcare, have you explored all avenues of pain management, and are you receiving support to manage your mental health at all from anywhere?
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  • janer1967
    janer1967 Member Posts: 16,509 Disability Gamechanger
    Hi there just wanted to welcome you to the community and thank you for sharing with us about yourself 

    Look forward to seeing you around 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,478 Disability Gamechanger
    Hi @Crazyraven - welcome to the community. Thank you for joining & telling us about yourself. I'm sorry to read about the problems you've had, & the difficulty accessing help; it can't be easy.
    I hope you like being part of this friendly group. :)
  • Crazyraven
    Crazyraven Member Posts: 18 Connected
    edited August 2021
    Thanks everyone, I live in N Ireland which is totally different from the mainland, back in the 60s when I started this in my neck and shoulders my parents took me to a dr who said, oh, growing pains.  With our Troubles, drs have flitted off for better careers in other countries, so it's understaffed.  Orthopaedic waiting lists are horrific, sis worked in their admin, it was usually 3/4 years, now with covid it's 6 yrs!!  When I got sciatica type pains around 2009, manged to get an appt. as they had to bring in drs from private clinics to clear it, the one I saw was so impstient, didn't make a full exam, just walked a few steps, you've got arthritis, and gave me an epidural whic only worsened things with new back pain crippling me.  It was so bad last year, couldn't get help, by June this year I was so desperate after again being blocked by not getting my gp, A+E threw me out so I went private and within 2/3 weeks got my diagnosis.  Don't mention neurology, my epilepsy, there's only 7 neuros, very little diagnosing or treatment facilities, you get sent to mainland specialist centres.  Made a complaint about the shameful, non existent epilepsy care I was getting 2015, spoke to head of dept, who admitted they knew they were failing us, but they can't get drs to come over here, and no funds.  With my epilepsy I've a lot of psychiatric help over the years, I've had to look after myself so much, I think I could nearly get a degree in psycho!!


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