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Food allergies, eczema and asthma - getting NHS care - what is your experience?(9 Posts)
I am collecting information about whether and how GPs are referring people (adults and children) to specialist NHS clinics for food allergy, eczema and asthma around the country. My report will provide feedback to the House of Lords Science Committee and the Royal College of Physicians and hopefully improve NHS care available in the future.
If you or your child has tried to access allergy / eczema / asthma care since January 2007, please email me with brief details: Your name, town where you live, the allergic person's gender and age, progression of symptoms and rough dates, where you were sent (if anywhere), the name of the doctor and what happened - also your email address.
Thanks, Hazel Gowland
PS If you are travelling abroad with food allergy, look up www.allergyaction.org Advice for useful expressions in different languages.
My GP was woefully unhelpful when my son reacted to nuts for the first time last year. She gave me a prescription for an epipen with the instruction " You just jab it in" and sent us on our way. i had to ask for a referral, and this was just to a local paediatrician. We have seen him privately., I recently asked if he would retest my son at any time and was told it was of no benefit at all. Our school nurse and the anaphylactic campaign are my most helpful resource.
My ds (8tmhs) is allergic to cows milk and egg, mild reaction - rash on face. First reacted when he was 6 mths old, HV prescibed Pepti immediatley, my GP got me referred straight away, I saw a Consultant Allergist last week, got a skin prick test done, bloods taken for analysis (3 week wait for results) and saw the dietician all in the same morning. Wonderful support all round. Shocking to think that the 'service' differs so drastically. I hope you do get the support you need.
Thanks nursenatty and Donada. Donada's experience is what we are aiming for but you are right that this is a geographical issue with major differences in what you get depending on where you live. Would you be able to tell me where you are and where you were sent - by email if not here? We are particularly interested in what you get in the north west - Manchester, Liverpool and up to Carlisle because that area is supposed to be given a priority for improved care and used as a care model for the rest of the England and Wales. Thanks
DS one month old when terrible bleeding excema broke out all over body including his head when I started giving some formula.
HVs and GPs absolutely useless despite me going in every week and being prescibed more and more very high strength medications including one which basically made DS head virually explode and whichi dermatologist was furious had ever been given to a baby
I very much consider that for HVs in particular it was all a part of their breastfeeding policy to make giving formula as difficult as possible. When I asked about hypoallergenic formula milk to supplement my breastfeeding they just told me to up my own milk production [which was totally impossible. I was already producing a pint and a half a day [I know because I expressed!] I just had a very very hungry DS.
I have never been sure whether the HVs were totally ignorant about hypoallergenic milk [which I find very difficult to belive] or just bloody minded in their desire to encourage breastfeeding which I would support.
I was dismissed as a neurotic first time mother when I raised the possibility of an allergy to milk. It is a little ironic given that DS is severely allergic to milk and has had anaphylactic reactions to it [as well as to other products].
Having said all of that, once I was actually referred on by the NHS GP to someone - in fact an NHS paediatric consultant dermatologist - it was all fantastic. I live in the centre of London and got referred by the dermatologist to the allergy consultant [albeit privately] very quickly. I was also very, very lucky as I now realise as:
(1) the dermatologist immediately realised that this was NOT a dermatalogical problem but an allergy issue and SHE prescribed the hypoallergenic formula - incidentally she said that "on the continent" babies would not have been referred to dermatologist at all but to allergists directly as they realise that most "dermatological" problems at that age are in fact allergy related
(2) the allergy people we were referred to [albeit we went privately but I think we could have seen them on the NHS in any event] were the key people working on the LEAP study
From being a part of LEAP I have spoken to other parents who live outside of London and mainly outside of cities who have been sent from pillar to post seeking help - really really awful for them. At least we only had to wait 3 months in all till we were diagnosed, although of course it felt like at eternity at the time.
We were already under the care of a dermatologist so referral to the allergy clinic was much quicker than going down the 'convincing your gp route'. The dermatology department carried out their own skin prick/RAST testing as soon as I realised there was a potential problem as there was a combined derm/allergy clinic at the hospital.
However the huge problem here in Leeds is that there is no funding for an allergist consultant. There is an allergy clinic run by a paediatrician with supporting specialist nurse and dietician which is pretty good but there is still a gaping hole as it's not led by a specialist. There was an immunologist attached to the clinic for a while but he has now left to concentrate on adult patients (he wasn't a paediatrician) and isn't being replaced.
Will this type of info do Hazel or do you still want us to e-mail you privately?
I find it amazing that Leeds has one of the biggest teaching hospitals in the country but it can't find the funding for a specialist in this field. The nearest allergists are apparently Sheffield and Newcastle.
DS was extremely slow to gain weight, and the H/Vs wanted to 'monitor' him by having him weighed every week. By virtue of the breast feeding topic on Mumsnet, one of the 'gurus' pointed me in the direction of the NICE Guidelines which outlined the times when a healthy baby should be weighed. Based on this, I was able to get a referral to a Paediatrician, who suggested that DS was small, but healthy. A further few months down the road, DS was admitted to Children's Hospital on an emergency basis and found to be suffering from severe anaemia, dehydration, and a few other metabolic issues.
Eventually he was diagnosed as cow milk protein intolerant and referred to as 'failure to thrive.' He's been dairy free for about 4 months and he's gone up 2 percentiles whereas before he wasn't even on the chart.
One of the consultant Paediatricians said that his symptoms were classic for an intolerance/allergy.
I am quite angry that these weren't identified earlier and that I was made to feel at fault -- it was suggested that I wasn't b/fing him enough, and then later, that I wasn't feeding him properly.
We have been struggling with DS2's eczema since he was 4 months old - he is now nearly three. During the first year of his eczema I pushed the GP really hard to get some allergy testing - we finally made it to the clinic after targeting the youngest and least experience GP - basically we had to bully him into making a referral. The allergy clinic would only prick test him for milk which came back clear. We were told to go away and get on with his eczema - it was something to be endured rather than cured.
Over the next eighteen months his eczema has improved noticably but is still not great. One morning in May DS2 had a hive on his leg, they continued to appear during the morning, the out of hours gp said to just give him piriton, by the evening he was covered in them and again we were told to give piriton - when we checked on him before we went to bed his face, lips and eyes had swelled greatly and we had to take him into A&E. No one knew what had caused it and we were discharged the next day with no real advice, no further action and no guidance. Again we had to go to the GP and demand a referral.
Today we saw the consultant who diagnosed non-allergic Urticaria. He was ready to end the consultation at that point when we persuaded him to do some allergy testing - he was very sceptical. The skin prick tests were positive for a reaction to dogs, cats, housemites and grass.
We are now making sure that DS2's bedroom is as dustmite free as possible - our twin hopes are that this will help his eczema and prevent him from developing asthma.
So my main experience with allergy clinics and referrals has been infuriating. With eczema you really are made to feel like you should just get on with it and accept it. No one really wanted to do the allergy tests - we just had to keep pushing. I regret now not just doing private years ago and getting some proper testing done. I am furious that the first allergy clinic we went to just tested for milk - surely a test of some of the commonest allergens would have been more sensible.
Here in Bathnes and Bristol if you don't push, don't make a fuss and don't give in you might just get taken seriously.
Ugh - got carried away with emotional "don'ts" at the end - last sentence should read -"if you push, make a fuss and don't give in you might just get taken seriously".
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