"Chronic urticaria"

About: Merseyside The Royal Liverpool University Hospital / General medicine Whiston Hospital / Dermatology

(as the patient),

I was first seen by my previous GP for an outbreak of hives around 2010 and was given antihistamines. They didn't work and, in fact, some made it worse. I developed andeoedema/anaphylaxis and had to call 999 and was taken to Whiston Hospital and kept under observation and sent home but advised to dial 999 again if the rash got worse. That is what happened and I returned via 999 and was an inpatient for a few days in July 2010 and seen by Dr McNulty who advised an URGENT referral to an immunologist. He provided me with an Epipen in the meantime because he felt I needed it, but told me honestly that he could not make a diagnosis. And I think he was correct in his advice. My GP had already referred me to a Dr at Liverpool Royal prior to that episode but I had not heard from him by the October ... which believe me, when you're covered head to foot in hives with no let up in the itching ... is one hell of a long time to hear nothing. So I phoned the Dr's secretary who told me he did not think I needed an appointment as Dr McNulty had given me an Epipen and he felt that was the correct thing to do. I was astonished that he could refuse me an appointment on those grounds. He hadn't even seen me, ignored the referral, no-one advised me that it hadn't been accepted so there was I being very 'patient' waiting to hear from him. I insisted on an appointment, he did some prick tests on my arm and that was that, I was discharged having been prescribed large doses of antihistamines - which DID NOT WORK. In desperation I changed GP, and when she saw the rash, which was still continuing from 2010 and which I still suffer with TODAY, she asked how I felt about a re-referral to the same dr at Liverpool Royal, I said fine. She re-referred me and received a scrappy piece of paper saying that 'this patient has been given a diagnosis of CIU, treatment with Epipen and antihistamines, does not fit my criteria ...' or words to that effect. Since that time I've been referred to gastro, gynae, respiratory, urology consultants for various conditions and I feel as if something is attacking my whole body ... but no-one is willing or prepared to join the dots and find out what the hell it is. Meanwhile I am dividing myself between all these different hospital departments who see me for each condition. I've had to attend A & E several times since 2010, for the hives and breathing/lung issues. The thing seems to be that no-one takes itching hives seriously enough to actually DISCOVER what's causing them. They're not considered life threatening and I suspect we who suffer from them are also considered a bit of a pain for moaning so much. But I wouldn't wish CIU on my worst enemy, believe me. Not only does it INHIBIT your life, it DEPRESSES you, it makes you CHANGE how you live, it's EMBARRASSING and HUMILIATING having to go to work covered in HUGE RAISED RED BLOTCHES which itch the hell out you ALL OVER, head to toe. I enjoy work, I enjoy my job but CIU has an ENORMOUS IMPACT on sufferers and most of us feel totally IGNORED as we're fobbed off with antihistamines and basically get the message not to come back because our condition isn't considered LIFE THREATENING. I would like anyone who thinks that's the case to suffer from CIU for just perhaps ONE MONTH ... then they might get an idea of just how debilitating it is and there may, in fact, be more to it than meets the eye.

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Response from Royal Liverpool and Broadgreen University Hospitals NHS Trust

Thank you for your comment and your feedback. We are really sorry that you have had some issues with us. We are really concerned and would like to be able to talk to you so we can help. Because this site doesn't show your details, we would need you to get in contact with us so we can do this. Please do get in touch via our PALS team on 0151 706 2265/4903 or email PALS&complaints@rlbuht.nhs.uk or type-talk 18001.