Allergy services in the news... Should we start a massive complain letter writting?

[Isababel]

BBC news is taking an interest in the ridiculously inadequate provision for allergy sufferers.

Considering the media interest, I wonder if we should start to write letters (to MPs, PCTs, local hospitals, etc) to see if we can bring more attention to the problem (and hopefully more money to run allergy clinics)

I'm even considering if starting a petition would be a good idea. Tatt??

'The health staff knew nothing'

Allergy epidemic gets 'poor care'

Individual letters would have more impact Isa,& it's obviously a problem.

But also,IMHO there needs to be research into WHY we're all becoming so allergic? Is it bad diets,organophosphides on & in foods or just our 21st century life-style?

I particularly resent this bit:

"But Health Minister Ann Keen added the government would be considering the other recommendations of the report.

She said allergy care had "firm foundations" with more than 90 allergy clinics operating in England and more money was being made available to increase specialist allergy training posts to build on that. "

Does she even had a clue that most of this clinics run for a couple of hours a month which means patients have to wait months if not years to be tested?

I think I would send a copy of my letter to her too.

I totally agree with that but... something has to be done about providing information and support to families of alergic children. Unfortunately, the ignorance of many health professionals is putting our children at further risk:

i.e. I know a couple whose child is so allergic to milk that if you touch a cheese dorito and touch him afterwards his face gets puffed, gets a rash all over his body and goes into projectile vomit... the advice of their HV... "Oh you just need to keep trying, try the milk again in a couple of weeks" an advice that could potentially kill the baby.

slaps head & rolls eyes

Isa that's JUST sort of thing gets other HC professionals a bad name...what crass ignorance!!

But also don't you find some parents are quick to label their child as "allergic" when they are merely "sensitive or food intolerant" ?

The little chap you mentioned has a proper allergy. To me allergy is a severe reaction (like that) or someone who needs an epi-pen if they touch fish/peanuts. But it frustrates me when I here mums say "oh DD is allergic to xy & z when they mean it upsets them or they get a rash when it appears. Still upsetting & annoying but not life threatening!

(sorry going off the point which I agree with!)

But can't lots of early rash etc type reactions progress to full-on life-threatening reactions? Or is that another myth?
I've a list as long as my arm of allergy/asthma stuff going on. Seeing the allergy clinic but still early days. However, went to asthma clinic this week, and Dr said he was concerned I wasn't eating any fruit and veg and allergy clinics were basically a load of rubbish
After I explained I did eat fruit and veg, just not many raw, and that I probably had a better diet than he did, I said I would do anything it took to avoid the numbness, rash, wheezing, vomiting etc. He didn't know what to say.
If different departments would just support and respect one another, then there would be a slight chance of improvement in NHS services surely?

I'm not sure whether to say DS1 is allergic or intolerant to wheat and milk. If he has them it really sets his eczema and asthma off, BUT he doesn't go in to anaphylactic shock. According to my GP it is still an allergic reaction because it involves his immune system and an intolerance doesn't involve the immune system.

Just found these definitions:

FOOD ALLERGY
An immune system response by which the body creates antibodies as a reaction to certain food.

I'm assuming that it's those antibodies that were picked up in his blood tests. Which means even though he doesn't go into anaphylactic shock he is allergic and not intolerant.

FOOD INTOLERANCE
a condition whereby a person is unable to tolerate certain parts of foods. This is different from a food allergy because the immune system is not involved. An example is lactose intolerance, in which certain individuals cannot digest the sugar found in milk. Food intolerance is much more common than food allergy.

Nice on Metalmum!

I didn't mean you have to have complete anaphalaxsis to be allergic, but I do think it's a word that's overused in this context like bullying for normal childhood relationship issues.

I have been suffering for 7 years with sinus problems which when given an allergy test at local hospital 5 years ago told me I was allergic to cats, dogs, dust, dustmites, trees and a little bit to grass and flower pollen!
What treatment or support did I get. NOTHING.

I have slowly got more ill and have just had a horrible operation to clear sinus cavities and remove polyps from nasal cavity.
That was 6 weeks ago. I have most of my symptoms back again which include horrible wheezing. I take steroids constantly. I have had to give up my job due to taking to much time off! They thought I was making it all up!
I will write to any body you tell me too. My live is a misery most of the time!!

You're right Bossybritches it is a word that is overused.
I really want DS to have school dinners in Winter and the school have said that they can accommodate a wheat and milk free diet BUT they will only do it in conjunction with DSs dietician because they have had cases where parents have said their child is allergic to something and they haven't been , why would anybody claim their child had an allergy when they haven't????
The major problem I have with this is DS was referred to the dietician in May and still hasn't received an appointment and until he sees the dietician he can't have school dinners.

Anything that causes an instant 'reaction' whether it be a rash/hives, sneezing/itching, wheezing/asthma, watery eyes/rhinitis is considered an allergic reaction as it involves the immune system reacting to an allergen - whatever that allergen may be.

Anaphylaxis is a rarer reaction but the problem with allergies is that that can often accelerate without warning, and whereas something is considered mild, it can escalate in severity with the next exposure without any forewarning.

Any allergy - however mild, can be very irritating and distressing for the person suffering so I think its a little unfair to dismiss it so readily.

I wasnt aware of the nut advice when pg with my DD so continued to eat peanuts. DD was born with cows milk protein allergy and it also transpired she has a peanut allergy. As she has got older the cows milk protein allergy has reduced in its reactivity, but she has developed other allergies to 'general' things (cats/dogs/dustmite) along the way.

We have been fortunate enough to have a paediatrician at our local hospital (which has recently been under threat of closure), who happens to specialise in allergies. He has been pretty good, and acknowledges that there isnt enough known about allergies (difficult to research).

The best way to identify allergies is through blood tests, but most practitioners do not readily put people forward for these, and will tend to hand out steroids, inhaled/snorted or otherwise, rather than investigate the cause. If someone knew that cows milk protein allergy was the underlying cause of their skin condition/asthma or whatever, they could easily avoid it.

Food packaging is in dire need of shaking up.

Tesco's for example, will only vaguely label their products as "may contain traces of nuts" because it acts as a pretty good disclaimer and negates the need for their factories to be audited properly for presence of nut products.

This means that most foods from Tescos cannot be had by DD "just in case". Total nightmare.

Sainsburys is far better with labelling, and so we continue to shop there. It also provides a far better range of "Free from" type products.

Marks and Spencer are also pretty good.

It's an absolute nightmare.

Ronshar
I'm in the same situation, but haven't had the op. When did the sinus thing start? I was always bunged up as a child. It sort of came and went fro years. then after having dd its awful. Similar allergy results, asthma etc. Feel like I'm getting nowhere with drs. Can't work until I'm a reliable employee Looking for somehting I can do from home as and when I feel up to it....
Am very fed up[ with it... I am full of sympathy for you...

They were talking about this the other week on teh wright stuff...and appanreltyy people believe that having a Food intolerance is fashionable...
that is quite sad really! And belittles the real issue of intolerances and allergies of those that truely suffer...

I think though, that GP's should be trainined up better to recognise allergies and intolerances...

MetalMummy - that sounds more like school beaurocracy than a parents mistake.

Why would they disclose such a thing to you anyway? They obviously dont have confidence in their own ability to deal with the situation, or fear litigious reactions....

VVV - I also avoid Tesco. My family think I'm being over the top, but as soon as I see 'may contain traces of nuts' I just don't want it. Agree Sainsbury is much better. Very hard to eat out though - very few places will catyer for nut/sesame free. Don't know about wheat/dairy etc. Suspect its the same...

VVV, isn't it also, that a lot of factiories use cheap oils on their machines, and that those could have been nut contaminated and hence the disclaimer...

must admit though, I always have to giggle when I read on a packet of nuts, that it may contain traces of nuts (well, one should bloody hope so)...
it must be an utter nightmare though to have a severely allergic child or being allergic to foods, etc...yourself...

our story is the 'health staff knew nothing'

and yeah , letter writing is a start. contact/copy all letters to the anaphylaxis campaign so that they have a record of what the health minister gets from the public.

3and - it could be cleared up pretty quickly if it was by properly investigated by a GP in the first instance.

I'm not sure it is a fashion as much as it is bandwaggoning, iykwim?

Hotcross....McDonalds has remarkably detailed information on all its products

It's quite a relief actually......

Some places do....the more that allergies become a highlight, the more eateries will latch on to better labelling on their menues.

I know what you mean...on teh wright stuff they said somehting about 38% of foodintolerance/allergy sufferer beleidf it's fashionable...but bandwaggon is probably a better way to express it!

II htink labelling of food properly will be the way it will be every in the future, and if only to avoid getting sued(? I can never ever remember how to spell it, lol)!

Well, what I mean is, its more a case of "self-diagnosis" to something that is perhaps just a case of needing more fibre in their diet, rather than excluding/being intolerant to something.

Gluten is a common irritant though, and it is something we can happily do without.....

oh yes VVV...
They had a nutritionist on the programme, and she said that by all means people could try an elimination diet to see, etc...but she also said that msot people do it wrong...i.e. elimnating lots of things without re introducing them, etc...whihc obviously is pointless...
She also said that wheat is something a lot of people will have some sort of reaction too, usually the bloating...and that that was due to teh fact that absically in generally there is to much of it in the western diet and when the system gets overloaded it could become an issue...

Ronshar I had a septoplasty and polypectomy 2yrs ago and it did make a big difference to my breathing, snoring (which was really bad according to DH) and about 6 weeks before the op I lost my sense of smell which came back immediately.
It didn't make a difference to how bad my hayfever was though and the doctor told me that in some people the polyps can grow back within a year and in others it could be 30 yrs. I think mine may have started to grow back again so if my symptons get much worse I'll be back to the GP asking for the op again.

Hotcross
I have always been a bit coldy but it wasnt until after I had dd1 in 99 did it start in ernest. I was working at local hospital and kept getting nose bleeds. As a nurse thats not a good look!

I have only had really bad problems for the last 13months. I have had 4 lots of prednisolone, 3 sets of streoid nose drops, about 5 different nasal sprays.
I have also had a miscarrige which the doctors cant/wont tell me if it is a result of medications and or allergy reactions!!

I have never had asthma before but the GP keeps trying to tell me I have it now but I cant seem to get him to realise that it isnt asthma it is all in my upper respiratory system. It is easy for them to push you into a box with a label. Which doesnt fit me.
What is your story do you have any particular triggers or is it ongoing like me.