Difficult Asthma Clinic Referral

Hi,

My consultant asked a difficult asthma clinic to see me just before Christmas. I welcomed this as I had to change consultant earlier this year and I don't really agree with what he says. I know he is questioning my diagnosis (possibly thinking it is hyperventilation/anxiety or at the very least he thinks I am on too much medication for it. I believe this has caused my GP to change their attitude to my treatment too. I have enjoyed a few months of some stability but am a bit anxious as we enter the hayfever season (I had ten admissions last Summer including 2 to HDU). Anyway, I have received a letter to go to the clinic next week and wondered what to expect. Will they be able to quickly advise on treatment or will it be like when I was first referred to secondary care and I have to go through months of tests before anything? Also does anyone have any experience of seeing them when relatively well? My LUng Function Tests are usually good but when I start to feel ill, I get worse very quickly (last year I saw a GP at 5pm who wouldn't give me pred as I wasn't wheezing or really struggling and was in HDU by 7pm on magnesium, nebs and oxygen). I don't really get nervous about appointments but I am feeling quite apprehensive about this one.

[hb1977]

Hi

I've never been referred to a difficult asthma clinic; I get on really well with my current consultant and consider him to provide me with good quality care.

What I have found useful at my appointments is taking helpful documents and notes, I now actually have this all sorted into a ringbinder:

Asthma notes (my own record of each exacerbation, treatments, admissions and days off work)

Copies of my personal action plan

Copies of hospital notes - my consultant automatically sends me copies of clinic letters

Copes of my peak flows (which I graph on Excel)

All sounds a bit obsessive but really help me in appointments as I don't have to try and remember anything and also helps the consultant see how quickly things can change.

I was admitted in Feb, that morning I had gone to GP who gave me antibiotics but no Pred as she couldn't hear a wheeze. Later that evening I was ED then admitted. Initially my consultant thought this could have been avoided but when I showed him my peak flow graph and how quickly I deteriorated he agreed that the admission was unavoidable.

I hope some of this is useful. Keep us posted about your appointment.

[justTUX]

KaylaP,

I have been at various different difficult asthma clinics over the years. Have been to different ones due to moving to live in different places rather than hospital hopping because I don't like what certain Dr's say!!

Anyway in answer to your post. What hospital is it that your going to? Some of the big ones such as RBH will plan an admission for you and put you through a battery of different tests to see what it is that is triggering your asthma and how your airways react to different things as well as doing blood tests and allergy testing etc.

If it not one of the big ones such as RBH you will probably have a chest x ray, and do a whole lot of different lung function tests and perhaps some blood tests. You might not feel a lot gets done in terms of treatment changes at first because the initial appointment is more about getting your history, your work, what medications your one, previous hospital admissions etc. It will probably be a follow up that you find most beneficial as the consultant will have had the time to look at your results and see whats going on. It would be then that perhaps they will make changes and help control your asthma better.

Don't be put off when Drs say you hyperventilate and panic. This is a totally natural reaction when you can't breathe and in the initial phases of an asthma attack you will hyperventilate as you are trying to get as much oxygen as possible. it can be a vicious circle sometimes as your asthma causes you to panic and then the panic causes your asthma to get worse. It may be recommended that you see a respiratory physic to get some breathing techniques to help you when you have an asthma attack.

You may also see an asthma nurse and have your inhaler technique assessed and an action plan written so you know what you are to do when.

Hope this helps.

justTUX

[Hidden]

Hello KaylaP,

I have also been to several clinics and not by choice either. Consultant decision to refer. I had to change GP too recently. It depends what hospital clinic you are going to, others here may have experience in the same area. Some have planned admissions for tests, others do this through a process of appointments.

I was referred to RBH (the Brompton in London), from my local, who have a difficult asthma protocol or what they sometimes call a systemic assessment. They do this as an admission for all sorts of tests including bloods, peak flow, lung function, spirometry, 6 minute walk test with physio, 24 hr pH probe, sleep study, CT scan, ENT scope, allergies etc. It can vary as they see people in clinic first and tests depends on what they may look for as possible cause of breathing troubles and check it is definitely asthma. Any of these can co-exist with asthma too. Unfortunately, saying it could be hyperventilation seems to be a fallback for many doctors when they're not sure what to do and think you're on too many meds. It does not mean though that no-one can help, may just mean they have run out of ideas or don't have the facilities to do all the tests.

Every consultant, clinic and hospital varies as do patients. Can't say for definite what will happen at your appt. In general though, having been to several specialist clinics for various things, I would say best to think about your issues, any questions you have, your medical history and any family diagnoses, what you would like to happen e.g. medications, admissions avoidance etc. Ive found best not to expect too much initially, it's more of a fact finding mission and getting to know each other. May have initial checks such as bloods or a chest X-ray and prescription if they feel this is right for you. I check at the end, what the plans are going forward and that I will get copies of letters etc and when. Always best to chase if you do not hear as unfortunately mistakes can happen and bookings go missing. I have never seen a specialist asthma nurse in clinic or had an action plan formally gone through which is not ideal. Like hb1977 says, it can help to have things written down. Not all docs will look at these but it can help to prompt you and if short and to the point, they may take it on board more quickly.

Have been fairly well in some appts and can have higher than predicted lung function which confuses matters at times. I haven't gone downhill in the same way or had your admissions.

Good luck with your appointment.

[Hidden]

Thank you for all your replies and I apologise for not posting sooner. I found all of your replies helpful and they made me feel a little less anxious about the appointment.

Hb1977 - I keep a folder (although probably not as organised as yours) with clinic letters, discharge notes, old peak flow diaries etc which I took with me to the appointment. The nurse was impressed but the consultant wasn't really interested!

justTUX and TJ- I have been referred to Leeds. I have seen a respiratory physio (twice) in the past who said I probably slightly hyperventilate when O am struggling to breathe but it wasn't true hyperventilation as I don't really have any of the key signs. She did some breathing exercises with me but my consultant still thinks it is anxiety!

I went to the appointment yesterday but still not sure what to think about it. As TJ said it was a bit of a fact finding mission. I had spirometry and feno done which as predicted were good (although I think the feno was 28 which is slightly more than last time but has been higher). He did ask about history, symptoms etc and I had to fill in a asthma uk control test (which came out as uncontrolled but they ignored this). I only saw the nurse for the tests and the consultant felt a bit rushed so didn't really get much explained and it all seemed a bit odd. Basically I am now waiting for several tests many of which I have had done before.

He thinks I have asthma (family history and proven allergies) so sent me for a blood test (for the allergies that have already been proven) and a full set of lung function tests. I have had a strange lung function test in the past which showed low diffusion so he wants that repeating. Luckily I do not have to have the ph study done again and he was a bit confused as to why I had a ct scan done (until I told him about the diffusion). I also need to have the mannitol challenge to confirm asthma (although he thinks it will be positive). He then went on about getting my cortisol checked. I said that I only had this done about a month ago because my blood pressure has been a bit strange recently but he seems to think this called be an issue so if it comes back negative, I will need a synthcen test. I then need to go back in 3 months. In the meantime, he has reduced my steriod inhaler as my spiro was good. This worries me a bit as it is coming into the worst few months with my asthma and I am just about controlled at the moment but I started to worry about appearing anxious. I am also a bit concerned about stopping meds for the manitol challenge. I am allergic to so many things I don't think I can bear 3 days without antihistamines in the summer months. I am a bit annoyed that they are no closer to sorting it out but understand that they need their own info. The annoying thing is is that I need to go to my regular hospital (also in Leeds) for the tests! I forgot to ask for the clinic letter so will phone them tomorrow.

Sorry for the rambling - it was a strange experience but hopefully in 3 months I will have some answers.