Dealing with chronic pain
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The NHS broke me

Sorry_SusanSorry_Susan Member Posts: 56 Courageous
My daughter (24 years old) suffers with acute, undiagnosed chronic.pain.
Since lock-down things are more challenging as most services rolled up the pavements and closed up shop.
We received the happy news in February that we had a appointment at UCLH pain clinic on 17 July. We lived in angst that the appointment might be cancelled and celebrated when it was changed to telephone appointment and not cancelled.
The doctor crushed us at the appointment by saying that there was no purpose in trying to find out what is wrong by doing further investigations. We were referred to UCLH by a very clever professor along witj a letter to them requesting some investigations and also suggesting which doctor might be able to shed light on the problem. Clearly dr. Crusher did not read the referral.
As my newly found assertive self would have none of this, he spoke to his leading clinician who immediately offered us another appointment on 29 August, via telephone with one of the two named doctors.
This doctor never phoned!
I managed to get through to the clinic and the very nice nurse magicked us an appointment for 3 August. Will they phone? Who knows.
I am seriously considering taking a pop up tent and sleeping bag and.moving in to UCLH until my daughter is seen. 
The waiting isuis killing us. 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI,

    I'm sorry to hear this. It's really not easy trying to find a diagnosis for pain conditions. Sometimes people wait many many years to find out what's going on and finally have a diagnosis, others never get a diagnosis.

    In 2007 after moving hundreds of miles up the country i started to experience pain in different parts of my body. I visited my GP who gave me some pain medication but unfrotunately, that didn't help at all. I went back to my GP again and this time i was refered to a Consuitant. Little did i know that was just the start of all my problems. The pain got worse and my hospital appointments increased.

    One Consultant i see told me "it's all in your head". Extreme pain over all parts of my body, i couldn't do what i used to be able do but yes it was all in my head. 3-4 years past and i'd had all the tests you could possibly think of, finally i had a diagnosis, fibromyalgia, CRPS and pernicious anemia. With 3 small children and a single parent with no help form anyone, life certainly wasn't easy.

    Hopefully your daughter will get some answers soon.
    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.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Yes @poppy123456, Chronic Pain is often spuriously blamed on "it's all in your mind" as it stops them having to worry about it and do something. I get this regularly despite having pain for nearly 15 years. Every now and again some clever Juniod Doctor has some clever idea about me using too many pain killers.

    The Pain Clinics are usually overloaded with minor ailments and don't spend enough time on potentially serious ones unless they have been going on for some time. I think it was almost 3 years before I was treated by them.

    All you can do is plug away and try to almost embarrass them into reading the referrals because, like most doctors, they don't like being told by anyone about their specialties.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @Topkitten yes, the pain clinic, they're absolutely useless for me and haven't helped me at all. I was discharged from them in 2017. Then i asked my GP to refer me back there last year. I waited 10 months for my appointment and the Consultant i seen was the absolute pits. Infact i reported him when i got home purely because of his attitude towards me.

    Thankfully since then i've moved house and now have a new GP who is truely wonderful, very understanding and extremely supportive.
    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.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Glad things are going better for you @poppy123456. Personally I have given up hope on ever getting help and I can't even move because they are so obstructive. Whole Social system and NHS have given me no options.

    Good luck to you tho.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • wanj_ndu67wanj_ndu67 Member Posts: 5 Listener
    I have been suffering from chronic back pain for past 6 years.  When I was referred to UCLH I was hopeful they were going to find out what was causing my unbearable pain.  He bluntly told me that there was nothing wrong with me and I was imagining in my head. My pain is neurological and it affects even my feet.  I gave  up on pain clinic after a locum doctor prescribed medication which interacted with my epilepsy medication.  I have lost hope of ever being able to do anything without screaming with pain. I cannot remember how it felt to be pain free. 
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