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'

Metal mummy. I lost my smell last year and got it back after the op but now last week it has gone again. I hope my polyps are not growing back already. I was hopeing for at least a couple of years of normal life.

Anyone notice how much better allergies got whilst pg?

There are minor allergies and severe allergies, some will be outgrown, some will get worse.

What worries me about all this very "basic" services is that severe cases are sliping thorugh the net. IE. It took 18m to get an appointment for DS to be tested after his first reaction to peanuts, in the mean time he had another 2 reactions, private RASTs confirmed not only Peanut allergy but a good number of others but local doctor wouldn't hear of that until DS had a skin prick test and Epipen wouldn't be prescribed.

In the mean time, we weren't given any advice on what to be careful with, what other names the allergens had or even about carrying something as simple as Piriton with us at all times. Now... we have the Epipen, but nobody could instruct us on how and when to use it so we have got the information from other parents who have children with similar problems or a charity (The Anphylaxis Campaign)

Now, happily, DS has an Epipen and with it came all the attention of the doctor, and my credibility is back in place but I'm sure that there are many other persons out there going through the same struggle because there is not enough provision to deal with allergy problems.

I'm going to start by sending one letter to my local hospital with a copy to that ignorant minister. BTW I don't blame the medical staff either, many have tried to help but due to lack of budget/lack of training they are not able to help as they would like.

Isababel thats shocking! Epipens arent 'dangerous' as such, so having one as a precaution makes total sense. How bizarre not to give one out?

When DD got hers, we had a district nurse come around to show us how to use it, and the same nurse visited the nursery she was at to make sure they knew too.

I didnt have to organise anything at all.

DD's school had a re-training session on epipen use too, on Monday I think it was. They all do it as a matter of course.

well I e-mailed the head of the Lords Committee when I heard about it and I always join in when the Anaphylaxis campaign ask for stories to give MPs/ the media. My family have both food allergy and intolerance to deal with so while I do like people to get the terminology right I know how ill an intolerance can make someone feel.

When I write I always talk about both - the allergies because they are anaphylactic and the intolerances because I believe the NHS wastes a lot of money. People with food intolerance can be prescribed quite expensive drugs/ investigations when they can't get help to identify a problem with food. Quoting a specific example helps to get that point across to committees.

Services in the NHS will never improve until there are doctors teling other doctors they have got it wrong. So more training posts feeding into more consultant allergists is a good start. But that does take years. I don't really know how you can get through to the existing professionals to improve what they do.

On a personal level I do try to educate everyone I come across (to the point of boredom and perhaps beyond ). What would help would be applying to be members of your local health boards. Offering to talk to people at your local health centre/ hospital or wherever might help. And everyone can educate their own doctors,a s you've been doing so well Isababel.

VVV, I have been told that Epipens are dangerous in certain cases, for example if you inject into a vein. Hence why it is sooo important to have a proper explanation on their use.

Oh I agree completely with that Isababel, but what I meant was that proper administration of it when a reaction isnt necessarily an anaphylactic one isnt dangerous.

I agree with that.

I have read some of the comments section on the BBC web site on to our families story.

The main posts do seem to still think that allergies are a minor , and really not that important.
I am not surprised, but disappointed that after all this time, people still dont understand the severe impact that allergies, both classic and intolerant have on individuals and familes.

I find it disgusting in this day and age that milk intolerant children are developing rickets while they are waiting for that first appointment after refferal.

When i told the beeb people that WE waited 8 months, they were shocked, but I explained that We were the lucky ones! its a year to 18 months before first appointment normally.

Why are allergies so easily dismissed?
because of the stupid fashion to have an eating preferance labeled as allergy?
or the nerdy way moives portray a allergic reaction.
For some reason whole body swelling is seen as a joke rather than a life theatening situation!
and DONT get me started on eastenders!! AHHHHHHHHHH!!!!!

We pay so much to the nhs, why cant we get the help we need? how many lives HAVE been lost because of this poor service for allergies!
We have a high rate of asthma deaths a year , how many of them are really food related???
............................on a bit of rant today, sorry!

Williamsmummy

I have just seen the video, I'm sorry you have got irritating posts.

There is so many people who just blames the problem in mothers being over anxious, even if the child is being severely affected by the allergies.

Some people think that you only have a severe allergic reaction if you colapse on the floor in fits with foam coming from your mouth, while in reality, not all severe allergic reactions are that dramatic even if equally dangerous.

Intolerances are not the easy going cousins of allergies. You can experience sheer misery through them. DS's allergy/intolerance to milk was bad enough to present itself as eczema, asthma, an ethernal stuffy nose, and the painfully bloated tummy which restricted his movement to the point that by the time he was 30 months old he had the movement skills of a child one year younger.

The change he did when we removed dairy from his diet was such that we felt as if we had been given a different child. Sadly, it took for him to get a reaction to peanuts for somebody to finally pay attention to our concerns to dairy (they were tested at the same time)

I understand that many people can only see the tip of the iceberg and think there is nothing else beneath the surface. Unfortunately, for many families there is, and the failure of society/government/nhs/etc. to take those concerns more seriously are indeed putting the lives of many people, my child included, in danger.

BTW Williamsmummy, you have a lovely child!

i know , hes quite good looking....doesnt get it from me!! LOL

My family seem to treat me as some sort of odd ball. Like it is all my fault and it is my problem to deal with!
And I am an adult. I cant begin to imagine what it is like to have a child with such severe allergies. Must make life much more tricky!
I admire you Williamsmummy. You and your whole family.

I've been mulling this over and wondered if the best thing to do might not be to start local allergy groups. If we could get local groups of people with allergies together they would be able to put pressure on local gps/ hospitals to improve in a way that one person alone can't manage. They'd also provide support for the newly diagnosed.

Anyone who works in the NHS who knows whether there is small scale funding that might provide for room hire say once a month and a mail shot to members of Allergy UK and the Anaphylaxis Camapign? Haven't contacted either organisation yet but I suspect if a few of us set up local groups meeting in people's houses initially then they might seek funding to extend nationally later.

What do people think?

In a way , this has already been done. campaign groups like the anaphylaxis campaign was set up with meetings in peoples homes.
However, today, the National stratergy group are made up of all the charites working towards improvement of allergy services.

there are lots of small groups around, and many meet , but for the main part the interest is not in campaigning for improvements, but support for here , now and for today for each individual.

Once as individuals have a 'handle' on their own allergies ( or childs) are they then able to be free enough to campaign.

I would like to raise a large amount of awareness of the sheer volume of severely allergic people by having , for instance ,a large picnic in hyde park. Ask the press to go and arrange for the charites to support this, and keep allergies high in the news.

Add a few boards with pictures or info of the deaths in the uk from allergy, and of course of people who have had near misses, and rub the fact home!!

Interesting idea - have you tried it on the anaphylaxis campaign?

I'm not aware of any local groups anywhere near me.

sorry haven't got time to read all thread but did you see in news recently about an 11 year old boy whose new secondary school excluded him because they "didn't have the provision" to deal with his severe nut allergy. WTF? As mother of severely anaphylactic child this really got my goat.
So agree that more needs to be done. Have so many stories about well meaning hvs giving me terrible advice.

So where do we start?

I have talked to my local hospital about it, they toldme that they have been trying to improve the allergy services for a while but they were not getting any attention (£££). They also told me that a letter to the director would be wlecomed as it will bring more attention to the need of a better service.

I'm meeting with some medical students who are doing a student project on how to improve what is available. I hope that little by little things become at least a tiny bit better.

i attended a meeting with my PCT and gave a brief talk on allergies, and the problems we face.
However, again, its due to money and training of GP's, ( which has been done for some in our area) so its going to take years to filter through.

However upshot of that meeting was that the rep of the local pharmacies said that he would make sure that epi pen use was explained as prescriptions went out.

This was because I explained that it took two weeks after obtaining the epi pens, before anyone showed me how to use them!

I am still wondering if the picnic idea is feasable? if the press would be interested? if we could get a large gathering?
Would be sucessful in keeping allergies in the news?

Williamsmummy... but that is a record time, I only get a proper explanation on how to use it 3 weeks ago and that was because I convinced a person from the Resusitation team at the hospital I work to explain me how and when to use it. (Have been carrying an epipen with no further explanation than the instructions that come with the box for 2 years now!)