Hi i have brittle, difficult asthma. I saw my specialist at my local hosptial yesterday. Due to my asthma still not controlled with the vast amount of medication i take, he has now referred me to Royal Brompton hospital.
He advised me i will be admitted for 2 or 3 nights. I will under go many tests.
Just wanted to know if anyone has been to the Brompton hospital for test and ask what i should expect.
Thanks
Nicky
Have bumped one of the old topics up for you about the Royal Brompton difficult asthma protocol....
Hello & welcome to the forum,
I am also just being referred to the Brompton difficult asthma clinic as the local consultant is not sure what to do with me as not severe/brittle but persistent and tests (done when well) were ok. Sounds like yours is more aware of what they may do there.
There is old posts if you search on the side but not sure about more recent, have put a few links below. As far I know, seen in outpatients first which is not too long a wait currently. Then there is a difficult asthma protocol where you are admitted and all tests done together, suspect the wait for this is longer. May involve ENT, gastro etc to check for any exacerbating conditions such as sinusitis/reflux
asthma.org.uk/applications/...
asthma.org.uk/applications/...
*edit to add, oops partial cross post with Malawi2
wow thanks
Hi there
Thanks for your replies. Had a quick look and your link and look very interesting. I must say not looking forward to spending time in hospital and defo not looking forward to all the test. My consultant who i currently have to see every 4 weeks, advised me he will see me in 4 months. I was a bit taken back and asked why 4 months ( as im normally unwell again after just seeing him) he advised me because i will of been in Royal Brompton by then. Just want it over and done with really and hopefully get my life on track.
Never know we maybe in there the same time if you also have just been referred.
Take care
Nicky
No worries 
Have to say am somewhat apprehensive too. Consultant here said may not have asthma but 'loss breathing control' i.e. tendency towards hyperventilation (I don't), reflux meds from ENT have helped esp in mornings unexpectedly and didn't pay any attention to that apart from dismissing it as not typical heartburn meant it couldn't be... Long list of odd things said which I won't go into again here.
Think there may a few others being referred too, maybe see you there but would have thought brittle cases more urgent so seen first? Am waiting for letter to be typed so may take a month to get out knowing this place
Hi NIcky,
I may be going there too but don't know yet, know it's one of the options but GP wasn't sure if he could refer directly so might be elsewhere.
I wouldn't be staying in though, just for outpatients - like TJ I am weird asthma-wise but not brittle/severe; however have been dismissed by two consultants as 'nothing wrong' and now have baffled my GP with my 'definitely something wrong but no idea re medication'! So might be seeing you and TJ there...oh the suspense of finding out where I'll be. Really nervous about it too as have so often been told nothing wrong I'm worried they're going to say 'go away, what made you think you should come here?' But think it's natural and have heard they are good with 'weird' cases.
I think it has really helped people from what I've seen on here; not everyone gets on with them and some prefer elsewhere but some people really seem to have found RBH has got things back on track and allowed them to stop having asthma dominating everything.
I was in for 4 nights Monday - friday. It's fine nothing scary, but very thorough. Staff all lovely and you just go around and do your tests. I had alsorts, saw ENT docs, allergy tests, ct scan, dexa scan the works.
Don't worry you will be fine.
Take care and keep well
Xx lisa
Thats actually quite a good thing really - I was in for 4 days before Christmas and it wasn't that bad.
They do quite a few tests and it can be quite rough but the end goal is that you can learn quite a lot about your own asthma which is really helpful.
One advise is take a laptop with you they have free wifi and that is a life saver
If you have any tests then give me a shout.
i have type 1 brittle asthma and was also refered to the brompton i found some of it helpful but am still stuck on prednisalone but who knows maybe i'll be able to come of them one day
A BIG thankyou
Thankyou so much for all your lovely messages. It is so nice for once to talk to people who understand and are or have experienced the same.
You have all reassured me and i know i need to have these tests to get me better.
So sick of feelin unwell and warn out all the time.
Also thanks for the tips eg take lap tops etc.
Thanks again
Nicky
Call the hospital
Hi Nicky
Why dont you call the Consultant's Secretary, or outpatietnts department when you get your appointment, there should be a number on the letter of call the switchboard and ask for the department or Consultant you want they should be able to explain things.
Ann
For information,
Current waiting time for first outpatient appt is approx 4-6 weeks once they receive the referral. If the Difficult Asthma Protocol follows there may a few months wait. Not sure how this is decided.
*Edit to add: The Asthma Clinical Nurse Specialists can give more information on the whole process I believe
Hello!
Just wondering how you are these days and how you got on at the Brompton?
TJ
Anyone been to the royal Brompton?
