I had a GP appointment recently and she's said she's not sure what else to do with me and that she's going to refer me on, specifically mentioning Royal Free. Has anyone been there? What's it like? What happens?
I'm on Fostair 200/6 2 puffs twice a day and 2 additional puffs if needed, Ventolin and Montelukast for my Asthma, and she also added something called Carbocisteine. Has anyone been on that? I'm also on a lot of other medications, including anti histamines and mast cell stabilisers. I carry Epi-Pens too if that's relevant.
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floating_
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Hi floating and welcome! Glad to hear your GP is referring you if things aren't under control (this can be a struggle for some people).
I've been to A&E/admitted at the Royal Free, but not to their asthma clinic. As far as I'm aware it's a general respiratory clinic, not a specialist asthma one. That basically means they may not have access to all the tests and treatments that a tertiary specialist asthma clinic would have, but it doesn't mean they can't help (and if they do need those tests or think you would benefit from those treatments, they can refer you on to a specialist asthma clinic, there are several of them in London now).
It sounds like your asthma is on the allergic side; if it helps I did meet a nice respiratory consultant there as an inpatient one time who said he was an allergist as well, so presumably they have some interest in that. (My asthma is not allergic but he seemed to be good anyway, just asked me quite a lot about allergies).
This post is more geared towards specialist asthma clinics, but might still give you some idea of some of the tests they might do and what to expect: healthunlocked.com/asthmauk...
(As an aside in case it's helpful, the Royal Free is in a bit of a dead zone for phone signal despite being on a hill, but at least they have wifi now!)
I have read about some people getting poor care, it's really sad that some people aren't getting the care they need.
That's good to hear re: a lot of specialist asthma centres being present in London! Hope that was the same for elsewhere in the country though. A lot of my care for other illnesses I have is tertiary care in London already (including my allergist, they're in St. Thomas'!), she did ask me where I tend to go in terms of tertiary care (I'm under various hospitals, secondary and tertiary, so can be difficult for her to keep up lol) - for me it's mainly King's College Hospital and St. Thomas'. Suppose I'll get more clarification when the referral comes through though.
That consultant sounds very kind, I'm glad to hear, although sorry you've ended up in A&E. I ended up in A&E on Monday, which was not fun!
Thank you for the link, will take a look.
(Thanks for the heads up re: signal, that'll be fun haha!)
I will keep my mouth shut on the topic of poor care...I am a little cynical now, even in London!
The Royal Free can be mixed from what I've seen, but so can many places - and I've had both good and bad on the wards. Did your GP not suggest St Thomas's for asthma as well? They have a specialist asthma clinic but also I think a general one and general respiratory, so wondering if it might be more joined up even if you're not yet in need of tertiary (and if you are then it's perhaps more convenient?)
Sorry to hear you ended up in A&E recently, hope you're recovering ok and they gave you good care! I have been a bit of a regular with admissions in the past, though lockdown has removed quite a few of my triggers so I've had a breather more recently (sorry lol).
No, I completely understand, I'm just thankful my care is good for the most part, save for a few bad run ins. If you need to vent or something I'd be happy to listen.
She did but only after I mentioned it, I brang up King's College Hospital as well as I go to respiratory physiotherapy there. My care is a bit messy but it works, haha. It's sorta why I'm wondering which one she will decide is best/if I'll get to choose. I'd prefer St. Thomas' overall as they're my main hub imo, at least for things that are highly relevant to Asthma. Guess I'll find out at some point! Thank you for the information though, will keep it in mind!
Thank you! I'm not even sure what happened to be honest, thing's are still quite rough, but not as bad. Glad you've had some peace! I've been shielding, not directly because of the Asthma though, but because of everything.
Ahh I get you, Choose and Book? I've forgotten how it works as it's been a while since my last actual referral (which was secondary to tertiary). For that I just said 'I'm not going to that place that everyone has heard of as I didn't get on with them before, how about this other place?' Glad you've got things sorted for you, though you must travel a lot!
Thanks for the offer... I have accidentally vented a few times on here, though I try to be a little vague about where I'm actually venting about! Sometimes you do need to vent, but glad things have mostly been good for you. 🙂
Sorry to hear things are rough, hope you can rest. I was also shielding before but haven't been for a while, especially since vaccination and updates about risk in asthma specifically.
Might be yeah! Or she might try and do a direct referral, St. Thomas' accepted that for my allergy condition, and internally referred me on to a more specific team (not general allergy) as a result. Sounds like you've had mixed results, I'm sorry! We do, usually, but unless it's urgent I don't go in at the moment. I've had one dose so far but had a reaction that was quite bad, so they're concerned about anaphylaxis risk, etc. Had the first one on January 27th so I've been waiting ages for the second one lol. Glad you've had both.
Venting is good, it isn't helpful to always keep things inside. Hope you have good supports around you.
Hi Floating, Just a quick one to say that I've been on Carbocisteine often. It works to reduce the viscosity of phlegm so that it is easier to cough up and clear out if your lungs are getting congested. I've found it beneficial for my bronchiectasis, a condition where one coughs up a lot of gunk. I do regular airway clearance exercises to enable this. It has been tricky getting things right -- too runny makes the phlegm harder to cough up and too thick leads to the same problem. With Carbocisteine I have occasionally found it difficult to get the right balance (phlegm getting too runny) in which case I have tended to rely on other things like saline nebs instead. But Carbocisteine certainly does work and it seems to be one of those relatively harmless things to try. Wish you the BEST!
Ohh that's really good to hear! I will ask my respiratory physio about chest clearence exercises, hopefully she will be able to help me with that? Glad it's helped you with your mucus issues, often feel like I'm drowning in mine because I can't cough it out as it's so sticky and thick!
Yes, your physio should indeed be able to help with airway clearance exercises. Nowadays the advice is to follow Active Cycle of Breathing techniques, which can be done sitting up. However in my case they work best when I lie down -- I lie flat on my back, then on my sides, and then on my front, when I do this clearance. It has become a daily thing for me and it really works. I hope it will help you when you feel you need it.
It does sound like you might need help with loosening and thinning the mucus prior to the exercise, and both Carbocisteine and Saline nebs should help with that. The other thing I find useful is drinking lots and lots of warm water through the day -- keeping hydrated is essential to loosening the phlegm. Gentle movement helps too like gentle pottering to the extent you are able.
I know that sensation that one is drowning -- it's horrible. It's always sad to hear how people are suffering out there. Good luck floating.
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