My daughter has a very rare condition called Minicore Disease, 2 weeks ago she was taken to her local A & E, with severe head pain, the duty doctor assumed she had a " bad headache " and totally ruled out meningitis! as he said that the blood test didn't show anything, ( this took nearly 6hours of her screaming in pain ), to cut a very long story short , she was admitted where she had a brain scan, then a spinal tap under a G. A. as any local could prove fatal, she was then put onto a self administering morphine pump ( 1ml every 5mins ) still she had very little respite from the pain, she now had the additional pain in her back as well, as they said that a nerve must have been damaged.
No diagnose had still not been made, they then decided to increase the morphine to 2mls every 8mins, throughout I had explained to EVERYONE about her condition they admitted they knew nothing of it, eventually she went into respiratory failure, where they had to administer a antidote for the morphine.
I had made a decision to get her transferred to a better hospital, one which knew about her, this took 5 days, within 24hrs Kings college hospital diagnosed meningitis,also encephalitis< she is now still in hospital, they cannot do another spinal tap as a GA would be far to dangerous as she also has a Myopathy attack.
I feel very concerned that there are people out there who may not have someone as forceful as myself, to ensure the best & appropriate treatment is received.
Sorry to go on so much, but this is a short version of what happened, or what could have been the outcome for my daughter.