Doctors haven't listened to me AGAIN — Scope | Disability forum
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Doctors haven't listened to me AGAIN

Hi everyone, 
I'm new here, I decided to join because I'm feeling really lost and lonely right now. I've been going back and forward to the gp for what I think is 5 years now about my pain and health issues. I still don't have a diagnosis other than scoliosis which took me 4 years of begging to get. I just got off the phone with the doctor after the most recent time of trying to get help. I had blood tests last week-something I know I've needed for a long time but put off because I have a very severe needle phobia, it took me 4 times to get it done but I did it in the end. So the results came back and in the doctors words "there's nothing wrong" with me. He refused to listen to me and basically almost accused me of lying because of how long it took me to get blood tests. He spoke over the top of me the whole time then proceeded to tell me he couldn't do anything and he couldn't refer me anywhere, and that the only referral I have is to the neurosurgeons about my scoliosis but they've "probably forgotten" about me so I should ring in case I'm not on their list. I'm 20 years old and it's getting worse and I can't do anything that anyone else my age does because of my pai. I'm about to start a new full time job and I don't know what to do. This job is going to mean I'm in a lot more pain because I'll have less rest time but no one wants to listen to me or help me. I think I've been to almost every doctor in my surgery. Do I just go back and ask to speak to someone else, even though I've been doing this for so long now and it still hasn't gotten me anywhere? I don't know what to do but I just want some help, I just want something. 


  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    Hi @emowen122 - & welcome to the community. I'm so very sorry for what you're going through as every patient needs to be listened to, which obviously hasn't happened with yourself. Altho in the majority of people the cause of scoliosis is unknown, I wonder if yours needed surgery, as you mention a neurosurgeon. I would have thought it likely that you would otherwise be reviewed to see if your scoliosis progressed.
    You also mention other unspecified health issues; if these are a continuing concern, then yes, you need to talk further to your GP, or another in your practice.
    I've been there a little like yourself; one GP said he wouldn't refer me unless I was willing to go privately; others understood that I was in pain, but didn't know why.....
    You can ask for a second opinion, tho you can't insist; most GPs should however be willing to do this. If you think your pain is related to your scoliosis, then getting in touch with your neurosurgeon seems like an idea. If you weren't happy with them, then ask for a second opinion.
    I'm hoping the following link may also prove helpful:
    As far as your new job goes you can ask for 'Reasonable adjustments:'
    I'm hoping some of this helps, but overall I'd like to say I'm pleased you've joined the community, where you'll find others that understand, & want to support you. :)
  • woodbine
    woodbine Community Co-Production Group Posts: 5,632 Disability Gamechanger
    hi @mowen122 and welcome to scope, not much to add really other than have you considered trying to see another GP at the practice, or even changing to a different surgery in the area?
    I am a person with epilepsy not an epileptic, my illness doesn't define me.


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