Its something that comes up quite a lot on here and I’ve seen it mentioned a few times recently so I thought I would write a post about my experiences at a severe asthma clinic and the kind of things they do there as I think I’ve had about every test under the sun at mine!!
Just be aware, though that these clinics are often very overbooked and so there can be a very long wait for an appointment (especially with all the disruption COVID has caused). If you’ve got a long wait but are still having major issues with your asthma then try getting your local hospital or GP to chase them up/get an update on progress.
What is the severe asthma clinic/why have I been referred?
These are normally regional centres known as “tertiary care” (GP is primary care, normal hospital based care is secondary care) and the clinics are normally run by doctors with a specialist interest in asthma (especially more difficult to manage cases!) who do a lot of research into it.
They also have a multi-disciplinary team (MDT) made up of various other professionals who work with the doctors, like asthma nurses, respiratory physiotherapists, specialist pharmacists, speech and language therapists, dieticians and psychologists.
People are normally referred to them if their local hospital consultant/clinic is still struggling to get control of their asthma – either through still needing prednisolone prescriptions or admissions to hospital.
Does this mean I have severe asthma?
Not for certain. It means that you need referral for assessment as there is a chance that you may have severe asthma.
Severe asthma should only be diagnosed by a specialist at a severe asthma clinic (beforehand and even after diagnosis you’ll probably hear lots of terms including severe asthma, difficult asthma and brittle asthma thrown around, technically these do mean different things but are often used by healthcare professionals to mean severe asthma).
Local hospitals will often refer to uncontrolled asthmatics as severe/brittle etc but this isn’t an official diagnosis until it has been confirmed at a tertiary centre.
The first appointment
Be potentially prepared for a long one! They’re likely to pretty much start again in terms of history and assessment to make sure nothing has been missed (If the hospital runs a difficult asthma protocol then it may be short and just to confirm they want to do this and what it involves).
When talking to the doctor they’ll want to go through the history of your asthma, any patterns you’ve noticed, symptoms you get, things that trigger your asthma, any family history, any other illness (especially allergies or infections), what medications you’ve tried, any flare ups you’ve had and what normally happens during them (think prednisolone courses, GP trips and any A&E or hospital trips).
Then they’ll also do some basic tests – probably a barrage of blood tests (this is to try and find out what might be driving your asthma, other illnesses that might be contributing etc) and some spirometry with reversibility (to see if you currently have any obstruction in your airways and to see if you respond to salbutamol as these are part of the diagnosis of asthma). These also help direct any further tests – an important part of the assessment is to look for asthma mimics (conditions that present similarly to asthma) and co-morbid conditions (conditions that often occur alongside asthma and can make it worse) as these often require different management to asthma but there are things that can be done for them! They’ll also probably get a chest X-Ray just to make sure there isn’t anything obvious like infection there (X-Rays are generally normal in asthma).
What can they do for me?
While a lot might not be changed at your first appointment severe asthma clinics have access to more medication than regular respiratory clinics – such as biological therapies for certain types of asthma (a lot of the above tests are part of getting approved for these therapies). The consultants are also more confident in prescribing higher dose drugs and potentially off-license/less frequently prescribed medications.
Having access to all the other specialists in the MDT can really help too, as it can provide quicker access to them for investigations and can make it all feel a lot more manageable.
There might not be any major changes to medications etc at your first appointment as they may well want to discuss your case at their MDT after clinic once the first test results have come through.
Possible further tests etc
After your first appointment depending on your history and tests, they might decide to do some further investigations, some of these might be:
•Methacholine/mannitol/histamine challenge test - if your spirometry was normal (very possible in all asthma!) they may decide to do one of these challenge tests, the three chemicals that are used vary between different hospitals but the gist of the test is the same. You do spirometry in between inhaling steadily increasing doses of a chemical that can bring on bronchospasm. The test ends either when you reach the maximum dose or your spirometry decreases by a certain amount. They then give you salbutamol to get you back to normal. It basically looks at how twitchy your airways are and is good for ruling out asthma if they’re unsure about the diagnosis. I won’t lie it isn’t the most pleasant test but you are closely monitored throughout so try not to worry!
•CT scan - basically like a more detailed 3D X-Ray of your chest, this can help to pick up any long-term damage to lungs that may not be visible on a basic X-Ray. You lie down and go into a donut shaped scanner and it only takes 5-10 mins max.
•Full lung function tests - these are more detailed than the basic spirometry and take a bit longer. They don’t just look at basic obstruction or restriction, but also things like how big your lungs are, how much air is left in them after you breathe out and how well different gases are able to transfer between your lungs and your blood.
•Bronchoscopy - this is where they put a camera down into your lungs to see what is going on. They can look for blockages with mucus, take biopsies (samples) of tissue and also look at your vocal cords. You’re monitored well throughout and if you’re worried about it can be given sedation to relax you.
•Nasal scope/exercise test - this involves either an Ear Nose & Throat (ENT) specialist or speech and language specialist putting a tube up your nose and down your throat to look at your vocal cords. Vocal Cord Dysfunction is both an asthma mimic and can frequently occur alongside asthma so its important to pick up. If you’re well the abnormal movement they look for to diagnose this may not be there, so sometimes they also do an exercise test and get you to walk on a treadmill while they look or spray chemicals onto your vocal cords while looking.
•Pred wean - if you’re stuck on steroid tablets long term, they may organise an official pred wean (either a proper plan as an outpatient or they may admit you for it). This means they can monitor how you do if you’re an inpatient for it and they can do various tests as your dose decreases to see what happens.
Difficult asthma protocol (DAP)
Its worth noting that depending on the hospital some places may run these tests and appointments with other MDT members as a Difficult Asthma Protocol (DAP). This just means that the appointments either all run back to back over a day or so, or they may decide to admit you overnight for them.
This may be standard to get them all done quickly or may be done to make things easier for you if you live quite a way from the hospital.
Also just a final note that this will still vary slightly from hospital to hospital and is only based on my experience (at 2 severe asthma clinics) and from talking to friends who have been to a couple of different ones!
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