Resp Cons.

I think this is going to be quite a lengthy post so here goes..

Last year my paediatric respiratory consultant said I would have to move over to adult respiratory consultant. It took 5 months for my paeds consultant to write to the respiratory team to ask whether they would take over. I was no longer having regular appointments with my paeds cons but was still on his ""books"".I was given an appointment with a resp cons a further 2 months later. However this appointment was constantly rearranged, during this time i had 3 admissions 2 of which resulted in HDU admission and countless A&E trips. The difficulty was that as it was in my notes I would being seeing my cons fairly soon the hospital didnt make any appointments. But the appointment kept being rearranged, my GP chased this up and the appointment was brought forward but again it got rearranged. In June I was admitted to ITU, I cant help feeling like the hospital didnt acknowledge my GPs accounts in several letters of how difficult my asthma was. During admissions, on ward rounds I was described as a brittle asthmatic yet officially I am a severe asthmatic. Following this admission I did finally see my consultant, who said home nebuliser treatment would be beneficial. From December 2006 to present it has been suggested I start home nebuliser treatment additionally, but this has not materialised, I dont know where I stand. I was due to see the cons again in early September but I am now finding the appointments are being rearranged again and again now to February 2008. My GP has wrote letters to the hospital again but they are being ignored. GP says he cannot make any real changes to my treatment without discussion with my cons but I (aargh) dont see how this is possible if I havent actually seen the cons myself! I am using far to much Salbutamol, as mentioned in another post that I get through 2 salbutamol inhalers per week. Which I know is really not good, considering typically 1 salbutamol inhaler lasts a month. In addition to salbutamol I am on Atrovent, seretide 250, 20-30 mg Prednisolone (maintenance), Theophylline, montelukast and various allergy medications. I have had several A&E trips and I am frequently in the treatment room at my GP surgery using the nebuliser. I just dont know what to do, my GP cant seem to get through to resp team about my current condition and I dont know if it is acceptable to keep rearranging my appointment given my previous medical history.I would really appreciate anyone's views on this.

Sorry for the length of this post and the whingey-ness of it. x

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hey simi,

do you not see your new consultant on the ward rounds? I don't see why if hes said you would benefit from a nebuliser you should have to wait to be seen in out patients to get one. On my first admission to adults, I didn't have a home nebuliser either, I met my consultant and first thing he did was say I needed one at home and I went home with one after that first admission. If all else fails I would sort it out myself. Get on the phone to the secretary or team SHO and explain the situation. It isn't impossible and I have been sorting out my own appointments and admissions at RBH since I was 16.

Let us know how you get on xx

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Hi Simi,

I'm sorry to hear you've been having such problems; I can't really understand how it could have happened, but you certainly seem to have 'fallen through the net'. There are usually very strict guidelines about follow-up for someone who has been in ICU.

I think you need to persue this through every avenue possible - by getting your GP to continue to write, by phoning the consultant's secretary yourself (switchboard will put you through), by speaking to other members of the team if you can, such as the SHO or the respiratory nurses, and by contacting the hospital's Patient Advice and Liaison Service (PALS) if necessary.

It really is very important, if you have had attacks as severe as the ones you describe, that you get regular consultant follow-up - it is dangerous not to. As I say, I can't quite really understand what has gone wrong for you here, but I would suggest that you keep making a fuss until something is done.

Hope this helps

Em H

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Hi EmilyH and Tks, thank you so much for your input. I was told during admissions that they would ask for a nebuliser from Respiratory Fuction in the hospital, but they told me that Resp Fuction no longer loaned out nebulisers for home use and that I would have to purchase my own. I would purchase my own nebuliser if I was certain that I would be going onto nebuliser treatment, but seeing as I am not seeing my consultant at present and my GP isnt entirely sure given the vagueness in the post appointment/ admission letter from the consultant which basically said I would have increased Theophylline and home nebs to start at ""some point"" which isnt very clear! I will continue to try and find out what is happening with this whole rearranging appointments etc situation. I did think I had ""slipped through the net"" also :s. Thanks again. x