Hi all, just wanted some feed back on what happened last month with my son. Don't quite know how to take it.
Jay is 11 and has difficult to control Asthma. He currently takes symbicort, ventolin, singulair, slo-phyllin, tilade and 10mg alternate day pred.
At the beginning of last month Jay came down with a chest infection and was prescribed Clarithromycin, it set his asthma off so I also started a couse of Pred (40mg). We managed with 3 - 4 hourly nebs for the 1st 3 days but he just wasn't coping well and really struggled on his way to school on the 4th day. The school followed their care plan and we went up to A&E. I explained what had been going on and said nebs were only lasting about 1 1/2 hours. He had 1 neb with ventolin and atrovent and was ok, no wheeze and peak flow up to 230 from 110. When I said he had had 4 days of Pred I was told he should only have 3 and to stop giving it to him (RBH have said between 5 and 7 days) and don't worry about him wheezing he will until the chest infection goes. Jay was wheezing again before we got home, so back to 2 - 3 hourly nebs.
Next day, no pred and finished ab's. gave normal meds in morning and had neb before leaving for school. Used 10 puffs of Ventolin on the way to school and a further 8 puffs in the office at school. Jay could not get up the stairs to his class room. His PF was not going above 120 despite ventolin. We waited 30 mins to see if he got any better but he was still not good. The school stuck to their plan and took us up to A&E. jay was using his inhaler on the way and in waiting room. By the time we were seen he was alot better. The doc (a different one from the previous day) gave 1 neb and sent us on our way. I carried on with 2 - 4 hourly nebs for a couple of days until he was alot better.
So far not too disturbed by treatment. Bit bemused about being told not to give any more Pred and a bit upset as not asked to wait 4 hours to see how long neb lasted especially given history but all in all muddled through..
Now comes the bombshell. The following week I received a letter. Addressed to Jay and not me complaining that he had used A&E inappropriately. The hospital facilities should only be used for 'life threatening' situations. I should have made an emergency appointment to be seen that day at the surgery or if the surgery was closed could have phoned NHS direct for advice. As you can imagine, I was not impressed. I phoned his Asthma nurse and explained what had happened and she was appauled. She phoned the practice manager to ask what was going on. He said Jay did not need to go to A&E for a neb as the surgery has one that he could use if it really was necessary. She told him Jay has a neb at home which he was using. The practice manager then said perhaps he needed Pred which they could have given. She told him he also had that at home and had used it for 4 days already. Perhaps he needed ab's came next, with the same response. In the end she said they should read peoples notes before sending out stupid letters.
a few days later a second letter came from the Gp. I thought it might have been an apology. BUT NO. It was asking me to bring Jay in for an Asthma review so we could dicuss the best way to prevent a deterioration in my son's condition. I could not beleive it, they were still trying to say I handled the situation badly.
This has knocked my confidence. I always felt able to go to A&E when i could not control things. I have a plan that I follow and most of whet I need at home. The next step is usually A&E and admission.
I have the asthma review appointment next week and would really like some advice on how to approach the Dr. Any advice greatly received.
Thanks foer reading and hope everyone is doing OK.
Oh my god i am appauled at how you have been treated?
No wonder you feel shaken and confidence kniocked, all i can say is not al docs and hosps are like that and hopefully this is just a blip for your sons health and safety. f asthma nurse agreed with you maybe a written plan by them to follow so you have wirtten evidence your following a plan set for jay only from his reg team of specialist.
Love and prayers
Andrea xx
Hello. I am absolutely disgusted at the treatment you and your son have received. I would advise that you make an official complaint to the hospital regarding the letter they sent to about 'mis-using' a and e and when you go in to see your GP for the review be open and forthright with your view of the situation. You don't have to be rude but don't feel that you have to shy away from saying what you think; remember these people work for you, you pay for this service (overpay?) and they are not doing you a favour.
And i must reiterate, don't let this experience put you off from using a and e. If you have even the slightest doubt then go. It's not nice if you feel that the a and e staff think you don't need to be there, and i have experienced snide comments myself 'I've seen worse asthma. You don't seem that bad to me etc, etc', but at the end of the day you are there for the treatment, not to make friends. Good luck!
Hi,
Don't really have much to suggest but I just wanted to add my sympathy. It must be a huge shock to have a response like that when you are so clearly trying to do what is best for your child. Poor Jay must be shaken as well - bad enough to be having such a tough time with his asthma without having things like that thrown at you as well.
From what you have said it certainly doesn't sound like you behaved inappropriately. I don't know what Jay's best/predicted peak flow is but presumably 120 is less than 50% or there abouts - an initial PEFR of <50% would make it a severe attack by definition, so you could argue that according to the BTS/SIGN guidelines he should not only have gone to A&E but been admitted. If nebs are lasting less and less time that is also not a good sign, as you clearly already know. And as you say, you have most of what you need at home, in terms of nebs, pred etc, meaning that the GP surgery doesn't have a lot extra it can offer for an acute exacerbation.
My advice, for what it's worth, would be to go along to the asthma review with an open mind, but with a clear idea of the issues YOU want to raise - maybe write them down beforehand if you think you are likely to find it difficult in the heat of the moment. Hopefully you can come to an understanding that you are all happy with, of what to do in a similar situation in the future.
I really hope this doesn't put you off seeking help urgently if necessary in the future. Personally I would rather attend A&E and risk them thinking it is inappropriate, than risk the consequences of not seeking help quickly.
I hope that things get easier soon and that you come to a satisfactory resolution with your practice.
Take care
Em H
Thank you so much for your support - the situation was starting to get me down a little. Jay had another dip last week but I did not go to A&E as a neb was bringing him back up again to around 70%. 3 days of Pred and 3 - 4 hourly nebs got him through it.
I just find his asthma really difficult to predict sometimes. I go on my intuition and a couple of times have insisted he be admitted to make sure he is ok as I have been struggling at home. Last admission was through my insistance (Jay hates hospitals and tells everyone he is fine) and he spent 5 days on ward, 2 of which needed 1 - 2 hourly nebs. The A&E doc wanted to send him home as he was not wheezing after B2B nebs even though his PF was only 120 (best is 320). At other times he seems really bad when we get there with PF down to 70, sats in 80's and looking terrible but be absolutely fine after a couple of nebs. This makes it really difficult for me to work out what is going on - especially as jay only admits theres a problem when he is on the verge of paniking because he can't breathe.
His peak flows are all over the place and can range from 70 to 300 in the same day. School have learned not to trust his judgement or his dodgy peak flows and only become concerned if his PF don't pick up and they can see he is struggling.
Most GP's don't seem to 'get' difficult Asthma at all and I sometimes feel as though I am beating my head off a brick wall.
Ho Hum ....
EmH will def write down everything and am not leaving until we come to some sort of agreement.
Thanks again - especially as it was a bit of an essay.
Hi Kookcat, I'm so sorry that you were the reciepient of a totally uneccessary letter and for the way it made you feel. Please dismiss the contents of that letter out of hand. I may be wrong but I think that your GP surgery is trying to cut down on A&E attendances. They are targeting the wrong people NO asthmatic should receive a letter such as this. Asthma is a life threatening condition which can deterioate rapidly and it is both inexcusable and unacceptable for your sons attendance to be questioned. The PCT (Primary Care Trust) are ,in a half cocked attempt to relieve pressure on A&E Depts putting pressure on General Practices and penalising praactices with patients who have a high attendance at A&E. In our area because dosheroonie is involved action is being taken hence letters such as this .Because unfortunately where money is involved judgement is coloured. There are very few occasions when i wish brittle asthma on anyone but this is one of them! I wish the Practice Manager who sanctioned the letter gets the same brittle asthma as me, i wish his or her life was turned upside down and huge limitations placed on his/her lifestyle. So that they see beyond the pound signs and business side of health care and have some understanding of living with or caring for someone with a chronic illness.
Sorry for the rant, this is something that i feel very strongly about. Please, please do not allow this riddiculous letter to undermine your confidence. You did exactly the right thing and i hope that you are able to dismiss this letter and its contents out of hand and also to complain in writing to the Senior Partner and PALS, your MP ,as many people as possible. I wish you and your son well and think you are managing brilliantly despite the efforts of your surgery! Take good care, love Lois
Can I just ask... who sent the letter to you about ""mis-using"" A&E? Was it the hospital or your GP?
I get the impression from your post that it was your GP, but some who have replied seem to think that it was the hospital, so I'm wondering if I've misread your post!
I am as shocked as everyone else is! I am sure that a lot of the people they see every single day must be far better than your son was.
I hope that once you have explained the situation to the GP they will be on your side, maybe have a word with your consultant too. In terms of approaching the GP I would make a written record of what happened to show them (incase like you me you get emotional/angry like I do). I would also ask what you should do differently (if anything!) next time.
The point about using NHS direct as well seems odd, because NHS 24 (the scottish version) are not able to give you advice or refer you to the oncall doctor if you are taking oral steroids!
Hope you and Jay are OK.
Hi Koolkat
I can really sympathise with you after what happend at the weekend to my 6yr old daughter . Chloe has severe/brittle asthma controlled with sub cut and various other meds. She has been very poorly with her asthma for the last 4 weeks 2 of which she spent in ITU/ HDU and she was finally discharged last Wednesday. On Saturday she spent most of the day wheezing and had nebs at home every 3-4 hours as it states on her plan. She was up a lot on Saturday night and was no better on Sunday morning so I decided to take her to the walk in centre there she was given a neb and some pred and she had not improved so they took us by ambulance to A & E . On arrival everything was fine and we were sent to a room and then we waited and waited . Chloe was very wheezy and getting distressed so I went to look for someone and there was nobody about. I went out to the reception desk and the receptionist didn't know where the staff were, this was 10:30 on a Sunday morning. I went back into Chloe and as i passed a room there were 3 nurses and 2 doctors sitting eating bacon and toast ( with the door shut) . I didn't go in i just went into Chloe and pressed the emergency bell and at last I got a response.At last a doctor came to see us and then the fun began. He asked how Chloe was usually treated so I explained showed him the care plan and he examined her. He decided to go and ask the nurses who were outside if he should follow it or should he give pred and nebs. anyway care plan was followed and we were put in the observation bay for a few hours . It was 12:30. By 1:40 Chloe was wheezy again I went to get a nurse she was just going for lunch , I told her she said ok and walked away from me. An hour later and we still hadn't been reviewed Chloe was still very wheezy and she was certainly no better. I decided to give her 10puffs of ventolin until i could find a dr. At 4:30 the doctor came back the same one from earlier and he agreed that Chloe was still very wheezy but that we could go home as it was probably just her and as she was moving about to get books to read etc.. she was ok. He said I shouldn't give her inhaler as and when she wanted it eg when she said she was tight as she relied on it to much. He gave her 60mgs of pred to take for 3 days . I told him we will be back later as she was still so wheezy and he told me not to be so stupid she would be fine if she fell asleep and to give her calpol and we went home. It was 5:30pm. At 8:30pm Chloe was still very wheezy she went upstairs and had an attack on her way back down we called an ambulance her sats were 88/89 and they took us straight back. The same dr was still there , but the nurse was even worse. Chloe was complaining of pain in her chest when she breathed in and out and the nurse told her to stop complaining as she has to live with it for the rest of her life! She also said I don't know what you have come back here for this is a job for the walk in centre. As a person that says what she thinks i didn't mince my words and told her in no uncertain terms that it was a 6yr old child she was talking to it was not acceptable and i'd already been to the walk in centre previously and had been sent there. I really hope that one day she finds it difficult to breathe and gets a nurse with the same attitude. Usually all the doctors and nurses are fantastic that approach us. Sorry for the long essay. I really hope that Jay has improved and make sure you complain to everyone you can. I certainly am. Take Care Nikki xx
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