"Angioedema/Chronic Idiopathic Urticaria"

About: Whiston Hospital

(as the patient),

I've recently been diagnosed with the above conditions which I realise the Immunologist sees every day in clinic. However, for me, this is a life threatening and life changing condition and I feel there is very little information and support for people like myself. OK - I have an Epipen, I've been shown how to use it, I have antihistamines which do very little to alleviate the rash once it appears. And last year I'd have been happy to just die in my sleep - that's how bad I felt.

I have a son who suffers from the same condition, he's had two episodes of angioedema and CIU and suffers from debilitating hay fever - yet he's never been referred to an Immunologist nor has he been given an Epipen. I also have four grandsons, two of whom are showing signs of sensitivity. And I have a young grand nephew who was born with Congenital Diaphramatic Hernia and who also has a severe skin rash.

Why are we not being genetically screened? Why are there no flags going up here? Why is there little interest being shown in family screening? Why - when I talk to doctors about this possibly being hereditary and very worrying for all of us - do I feel no-one is really interested?

I met FOUR other women in the hospital waiting room, all of whom had experiences similar to mine, all of whom had waited months for an appointment, all of whom were desperate for the cause to be found and all of whom felt dispirited and upset because nothing showed up on their tests. So it was left at that. If we're sensitive to chemicals why are there no allergy tests for chemicals such as aspartame and whatever is put in cleaning fluids etc? Surely if 'nothing is showing up' on the few skin pricks that we're tested for that should tell the doctors something? We're allergic to something else!

I feel that most NHS tests are limited and if you don't fit into those particular boxes then that's it - everything is OK and testing stops there.

I'd like to know if there is an Angioedema Support Group on the Merseyside area or whether there's an NHS Working Group dedicated to more research into this condition and learning more from those who suffer from it.

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Response from Knowsley Integrated Provider Services

Dear Grace

Thank you for your comments. We would very much like to respond to the various issues you have raised but in order to do so we would appreciate a little more information from you please.

Could you please confirm whether you were seen at Whiston Hospital Dermatology Department where they only carry out prick tests for latex allergies and these patients are referred via pre-op. They offer patch testing at St Helens which investigates causes of eczema but they do not run a ‘specialist’ allergy service.

If you were seen at Whiston Hospital then please contact Yinmoi Price (Patient Experience & Engagement) on 0151 290 4136 who will be very pleased to help you.

Alternatively, if you were seen elsewhere, then please contact Jacqui Sellek (Patient Advice & Liaison Service) on 0800 0730578 and we will do our best to help.

With kind regards

Jacqui Sellek

PALS (Patient Advice & Liaison Service)

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