Hello, Does anyone here have any experience of the newish difficult asthma unit please? My cons have been mentioning it for a few years but never seems to get round to actually sending me there..
Also other good tertiary asthma units in East of England? I know of the Brompton and also Barts in London.
Many thanks
Kate
Didn't know Barts had one! I am at Guy's which is ok - I much prefer to RBH which I didn't get on with. I believe there is also a new one at UCLH (but don't know much about it) and one at Oxford (maybe stretching the geography there for east!)
EmmaF91 is at Addenbrookes I believe so may be able to help on that.
Hi. I've just seen that you are with Guys but used to be with Royal Brompton (RB) but didn't get on there. I've been at RB for three years but because they haven't seen me have an 'asthma' attack, I don't seem to be getting anywhere, apart from trying xolair which unfortunately didn't help me.
I was thinking of asking my local consultant if it is worth transferring to Guys as neither my local or I are getting support. On average I'm admitted every 3 weeks with an attack requiring up to a week of IV hydro and back to back nebs plus magnesium and as the attacks seem to be getting worse, adrenalin at times too.
Can I ask how Guys has been better?
Thank you
Hi
I had a very similar experience at RBH. Because I was asymptomatic during my difficult asthma protocol (and so everything was coming back good) they decided I didn’t really have asthma and stopped most of my meds. This is despite multiple objective evidence (LFTs etc) from my local showing asthma etc. It was only when I went to outpatients 2 months later after 2 months of a severe infective flare up they took me seriously and fast tracked me to get biologicals. Whilst they did admit to dropping the ball, I did end up feeling a fraud every time I was there.
I have since moved house and am now under Addenbrookes. Whilst I haven’t officially been to any of their clinics I have found them very help and supportive. My first appt they my new cons arranged for me to come in on my day off, but not his day to do clinic, and we spent 2-3 hours going over everything! The people I have met seem really supportive and understanding if that helps KateMoss.
From what I’ve seen of Adds (my Cons and the asthma research people as I’m on Benralizumab now) they have been brilliant so I would assume that the rest of the department is too (tho obvs having never met them I cannot truely comment)
17Rose it may be worth asking for a ‘second opinion’ from guys to see what they suggests if you feel like RBH isn’t supporting you rn. Having swapped spec hosp I was amazed how different the experience can be!
Good luck to you both
Hi, I will send you a PM shortly if that's ok as I feel I can be more helpfully honest! I have found Guy's better overall and definitely better than local experiences, but wanted to outline some pros/cons less publicly for both places.
Thank you
Hi would you be able to send me info privately too please, I am still in hosp and they have run out of options, next step it stabilise and home with referral but I’d like to get the right referral for me so am now compiling as much research as I can. Thanks as always guys, such a relief to be able to speak to other going through similar issues 😊
Hi, sorry to hear you're still in - hope you feel better soon! Of course, will send over shortly what I sent to 17Rose. It ended up being quite long so I could explain the context of why I do/don't get on with the clinic but hope it's useful.
Hi Kate
I attend the severe asthma unit at heartlands hospital in Birmingham. I have been attending appointments, tests and had care here for over a year now. The doctors and nurses here really go the extra mile to help with my brittle asthma and the care has been impeccable. My consultant at the usual hospital referred me here and although it took around 3 months to get an initial appointment it was definatly worth it.
Maybe try mentioning it again to your consultant x
The Severe Asthma Clinic at Addenbrookes has been running for around 15 months now, and I was one of their first patients. The Consultant saw me on the Ward and brought his laptop in to take a full history of my Asthma. The team has specialist Respiratory Nurse and Respiratory Physiotherapists. They all seem very good. The Consultant has been liaising with Immunology and the other Respiratory Specialists and together we have brought my lung conditions more under control.
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