Am wondering how many others out there have a constant battle with doctors and hospitals on their childs asthma?
My son is 7 years old. He began having broblems at 6 months, the doctors put it down to a viral induced wheeze for 3 years. Even keeping an asthma diary which showed triggers etc I constantly had to fight for support. everytime ge had a good 3 months his inhalers would be stopped or reduced causing flare-ups and hospital admissions, constant chest x-rays for them to try and prove it was chest infections rather than asthma (they nearly always show no infection). in his life so far he has been admitted to hospital 15 rimes caused by asthma. He's been in twice last week! His consultant didn't even recognise us and when we go to outpatients have to take a copy of the letter from last appointment as he can never remember what he done last time. He's had 3 x rays in the past two mnths, third time lucky as the thrid one shoewed a chest infection whereas the others were clear!As parents we have to fight this horrible disease, we should not have to fight the doctors as well!
I must live in a bad area and have a terrible hospital and terrible doctors since know-one else has had problems!! It's not fair! I wish I had the support others seem to have
Hi Donna,
I've never experienced this myself as (fortunately) my older daughter has mild asthma, mine is brittle. I feel for you, battling the doctors too is dreadful and it sounds like you have NOT been receiving good care. Have you considered approaching your local PALS (Patient Advice and Liaison Service). You can use them to act as an advocate for you and your child and if you want to you can make a complaint through them too.
Have you spoken to the nurses on the advice line here? They can probably give you some tips on which questions to ask at the hospital or doctors.
If you are really unhappy and don't want to persevere you can ask your GP to refer you somewhere else, not sure how practical that is for you in terms of how close other hospitals are to you. If your GP is also part of the problem maybe you could consider changing GP? If you go down that route I would try speaking to your friends/colleagues and find out if they feel they have a good GP.
Have you kept a diary of medication/peak flows/flare ups/admissions and number of chest x-rays? If not then I would recommend keeping a detailed diary so that you can evidence to them that during a good spell with asthma controlled it is NOT going to be a good idea to reduce the meds!
Good luck with it all, please feel free to PM me if you would like to chat further.
Feejay
Hi
This does actually crop up fairly frequently on here. Which hopefully the consultation events that are currently being run around the country will highlight and provide solutions.
I've been lucky myself, and had what I would consider very good treatment, but as Fee has said below, PALS are a good point of call, and also the Asthma nurses on here, number at top of screen. If you're not happy with your GP, have a quiet word with the practice manager, they are keen to resolve any issues, as it stops you from making more formal complaints that look bad, some GP's unfortunately are not great with asthma, and children are really difficult to diagnose and treat, but your son is 7, so he can at least use a peak flow meter, and say how he's feeling daily.
Not sure what medications he's on for his asthma, especially when he's bad, but it's ideal to try and reduce the medication to the lowest possible dose after being stable for at least 3 months, but you seem to have gone through this process a few times, with dire consequences. This surely proves that he needs this level of medication to control the symptoms, and it's not wise to try reducing or even stopping anything this time of year, winters never kind to asthmatics (touch wood I'm escaping everything). The main problem with children and most medications, if on a high dose can cause long term side effects.
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