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Allergies and intolerances

NICE Anaphylaxis guideline dev group looking for lay members

24 replies

ClaireOB · 06/09/2010 09:47

see here

FYI any members affected by anaphylaxis/severe allergy.
"...The Patient and Public Involvement Programme and the NICE short guidelines team are looking for applications from patients and carers to sit on the group developing a clinical guideline on the assessment of anaphylaxis, after emergency treatment. Anaphylaxis is a severe and extreme allergic reaction affecting the whole body.

Patient/carer members of this group will play a key role in making sure that patients' and carers' views, experiences and interests inform the guideline's development and its recommendations to the NHS.
..."

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babybarrister · 06/09/2010 20:24

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babybarrister · 12/09/2010 19:59

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BlueBumedFly · 12/09/2010 20:21

How how how???

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babybarrister · 13/09/2010 07:36

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nottirednow · 13/09/2010 08:47

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babybarrister · 13/09/2010 09:40

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babybarrister · 23/09/2010 13:19

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babybarrister · 26/09/2010 18:14

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topiarygal · 29/09/2010 22:19

I did it just in time (is 22:00 on deadline day on time?) Phew - thank you, Claire - massive help! Let me know how you all get on!
tx

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babybarrister · 30/09/2010 21:11

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topiarygal · 14/10/2010 23:28

I'VE GOT A PHONE INTERVIEW!!! Anyone else?

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babybarrister · 15/10/2010 07:10

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topiarygal · 17/10/2010 21:31

Wow - good luck you! Mine's on tuesday at 10:20 - focussing on my 'group' experience - when's yours?
tx

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babybarrister · 18/10/2010 07:36

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topiarygal · 19/10/2010 10:31

Phew - more nervous than I thought I would be! Took 10 mins (good? bad? who knows) they were very nice - good luck babyB
tx

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babybarrister · 19/10/2010 11:21

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babybarrister · 19/10/2010 12:04

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topiarygal · 27/10/2010 12:27

I wasn't selected - any joy babyb?

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babybarrister · 27/10/2010 20:42

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topiarygal · 28/10/2010 07:43

Oh I'm sorry - I was counting on you getting it so I could feed into the process, but he-ho! You're right though - not sad to avoid the travelling. I got the impression that there were candidates who'd already sat on review boards, so were easier to slot in.
Good question - I've not become a member of the either Allergy UK or the Anaphylaxis group - probably because their websites offer good information but I get more support from this talk area and from Food Allergy Mums (FAM). When FAM's approached these groups for support in writing any documents, we've been thrown a lot of red tape - maybe their too ensconsed in their own approaches - like asking the NSPCC and Barnardos to merge ;D.
Good news is that DS is now 8 - every birthday I have a terrible, tiny moment of thinking wow - we've managed another year. I don't feel I could go to Allergy UK or the Anaphylaxis group with a 'sharing feelings' message like that. I suppose that's why I'm happy to support Lara in trying to get FAM working a bit better - and when I've finished re-building my house I'm going to rework the website - giving Lara some more time to work on setting up some more meetings. Sorry - there's a waffly response if ever there was one!
How do you feel you're supported by these groups?
tx

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babybarrister · 28/10/2010 09:07

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topiarygal · 31/10/2010 20:44

Do you think the Food Allergy Mums website should publish the information?

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babybarrister · 31/10/2010 21:58

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topiarygal · 31/10/2010 22:31

mmm - no idea - did you realise that they were only considering reviewing the GP referal to consultant process and not the anaphylaxis treatment process? I only really understood that in the interview - sucha shame neither of us know who's involved as there's an area I'd like to understand more about. mmm.
Will get stuck into the FAM website in the new year, let me know if you have any other ideas!
tx

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