can anyone recommend a really good specialist who knows about bronchiectasis please
recommendations please- West Sussex - Lung Conditions C...
recommendations please- West Sussex
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130396
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Hi
I can recommend Dr Edward Cetti, he works for the NHS at East Surrey Hospital but also has a private practice at Spire Gatwick Park hospital. A lovely guy who was incredibly kind and patient with my father, who had dementia as well as lung cancer. He treats the full range of lung conditions, I understand, so would imagine bronchiectasis is in his repertoire 😊
General respiratory consultants do not necessarily specialise in bronchiectasis, whether they have a private practice or not. As nobody in your area seems to be able to recommend one I suggest that you look at the website of your nearest large teaching hospital. Look for a consultant who specialises in bronch. They need extra training and experience for this. Take the name to your GP and insist on a referral. If you don't find one at the first hospital that you try, obviously look at others. I hope that you find somebody good. Good luck.
130396 in reply to
Thank you for your reply. What would I actually search for?
in reply to 130396
look at their respiratory staff. It should bring up consultant profiles. When you find one who states bronchiectasis or a special interest in bronch, take down the name. It wouldn't be a bad idea to phone their secretary and say that you are looking for a bronch specialist and ask if they would take you on with a referral. Then when you go to your GP you will already have information to hand. When you phone the hospital ask to speak to the secretary of that particular consultant, not the respiratory department. As bronch is so specialised and needs permanent access to ongoing treatment, it is better to come under the care of a consultant in a good NHS situation. They have access to physios, testing facilities etc. All of which are prohibitively expensive privately and insurance companies will not go on paying for a chronic lifetime condition.
130396 in reply to
I’ve found a teaching hospital in Brighton. So do I search in it and look for respiratory consultants ? Lung consultants? Or what
in reply to 130396
Respiratory consultants. Read each profile for one who specialises in bronch.
130396 in reply to
I’ve found a Dr James Myerson University hospital Brighton & Hove but I can’t find any details on him or his interest in bronchiectasis
in reply to 130396
it is a dreadful website. The only one whom I can find at Royal Sussex Hospital who specialises in bronch and has worked at The Royal Brompton is Dr Katherine Hurt. 01273 523106. Try googling her and see what you think. Otherwise there is Anastasios Lekkas at Southampton. That area seems very lacking in bronch experts. Most resp consultants in that area do not include bronchiectasis in their profiles and so I wouldn’t bother. Will googleJames Myerson.
130396 in reply to
littlepom.
Thank you so much for finding that out. I don’t know how you managed to do it but we’ll done! I’ll try and find the lady Dr you mentioned that’s worked at Brompton.
Southampton is too far away for me though
Rose
Hi, I see Dr Numbere at Worthing hospital. He is a bronchiectasis specialist and is very kind and I feel very confident that I'm getting the best care possible. His secretary is very approachable too.
He’s the Dr that have me my diagnosis and discharged me after seeing him just ONCE!!!
No care plan or treatment or medications at all.
Very disappointed with him .
He seemed nice but not interested in helping me at all
I would recommend Dr Reynish at St Richard's for pulmonary fibrosis and bronchiectasis. I would agree with 130396 regarding Dr N at Worthing - definitely avoid. My pulmonary fibrosis is managed by the ILD team at the Brompton with local support from Dr Reynish.
Yes, he is treating another family member for bronchiectasis. When I first saw him after having my respiratory care transferred from Dr N at Worthing, I was impressed that he had actually ready about antisynthetase syndrome beforehand and knew about the other aspects of the condition. He is always willing to listen and writes very good follow up letters.
morning
My old resp consultant now works at Chichester plus princess royal .
She is absolutely fantastic , specialising in Bronchilectasis
Couldn’t recommend her more highly , absolutely gutted she’s moved on xxx
thank you. Can you give me her name and I’ll see if I can get referred x
oh so sorry , would’ve helped wouldn’t it lol
Ms Vanessa Kahr
Seriously she knows her stuff xx good luck
lol thank you xx
And she definitely works with bronchiectasis?
I’ve just looked up St Richards…. There’s a 39 week wait from referral. Does she do private? Xx
she diagnosed me with Bronchilectasis , I was under her for 10 years plus , fantastic consultant
Not sure about private
I’ve just been on to Chichester. They say they’ve never heard of her there.
So no idea how to find her x
look on google
Dr Vanessa kahr Sussex hospitals
Hello again
I can’t find where Vanessa Kahr is.
Phoned the hospitals on the nhs list and being told she’s not there.
How did she treat your bronchiectasis?
Do you have emphysema at all ? Xx
evening, I only have Bronchiectasis,
She was on the ball the whole time I was under her.
Antibiotics, are a must
And when a flare up , sample straight in to be tested
I don’t have any antibiotics here.
What happens when you have a flare up?
What are the symptoms?
Do you cough? Do you use inhalers?
I’ve got nothing xx
I can only say bout myself … I definitely cough a shit load , I also bring up untold amount of phlegm, it’s very sticky and creamy , when it starts to turn colour that’s classed as a flare up and that’s when you spit into a sample pot , take it to your GP and they send it off , it’s tested if you grow anything, the Gp is supposed to change the antibiotics accordingly, you should always have a prescription at home , it’s a must
If you have Bronchiecatasis?? Why are you not under a consultant and been given the relevant information regarding this horrible condition?
I saw the consultant ONCE when he gave me the results. Then he discharged me and sent a letter to my Gp.
That’s it!!! Not given anything at all
also I have a flutter valve , but don’t use it much as it’s quite uncomfortable to do now , but I do exercises taught to me by the chest physio , I take a pink inhaler and phlegm absorbing medication
I haven’t got a physio nurse or dr looking after me . I don’t have a cough or anything just awful breathlessness
so did you have a CT scan to confirm Bronchilectasis????
If so , I suggest you see your GP and demand a referral to the respiratory team , Bronchilectasis is a life long condition, it’s in the same category as cystic fibrosis, copd,,, it’s not going anywhere ???
When it knocks you down it’s hard to get back on top of it ,,,,
Hope I’m helping xx
Yes I had Ct scans with abd without contrast. The bronchiectasis and mild emphysema was diagnosed after that.
Is the respiratory team different from the consultant I saw.?
Does it make your ribs in your back hurt?
the respiratory team make up of nurses , physio etc , they work along side the consultant,
Cannot understand thy they have just left you , but please speak up for yourself.
Personally if my back starts to ache , I usually know a flare up is about to happen,
But I must say the pink inhaler I was prescribed , I think is actually working because I’m on a course of antibiotics now but they seem to have shut down the green phlegm brigade before I had to supply a sputum sample
Did you find a specialist in Bronchiectasis? Or are you still struggling. I'm in a county over the border from you and I was misdiagnosed for 5 years by two 'top' respiratory consultants locally (that had no idea about Bronchiectasis). I took the same CT scan to The Brompton in London (top teaching respiratory hospital) and they could see the Bronchiectasis on the original scan, but scanned me again and put me through tons of tests. However, since Covid its really hard to get hold of anyone there when you have had Covid. Problem is, after years of poor treatment its the only hospital I trust to get me well again (eventually).
Hi
No I’ve not been able to find a specialist who deals and specialises in bronchiectasis.
I’ve no idea how to go about getting a referral either.
Which county do you live in?
Hello! I’m in hospital at present, hence awake at 03:45 😬 I just read above about Dr Katharine Hurt at Brighton. She was working at the Brompton about 10 years ago when I was a frequent inpatient there, she’s excellent! She was involved in treating bronchiectasis and adult cf, so she knows her stuff. Why not phone Brighton Hospital and ask to speak to her secretary? I see that Brighton, Worthing and Chichester have just joined to form the University Hospitals Sussex Trust uhsussex.nhs.uk/ so you should get a referral to Brighton. Their new website is hopeless to navigate but I found an email address for the Bronchiectasis Specialist Nurse uhsussex.respnurses@nhs.net
Hi
Thank you so much for taking the trouble to find this information out for me. Appreciate this very much .
I will email today
Best wishes
I have literally just emailed the nurses
Thank you
If that or the secretary doesn’t get you anywhere (though I usually find consultant’s secretaries very helpful), just tell your gp you’ve researched the best bronch consultant in the area and you want a referral to Dr Hurt. He can’t really refuse, now that it’s the same Trust. Don’t be fobbed off! Let’s just hope the waiting list isn’t too long. She must be early 40s now, blonde bob, lovely smile and willing to listen. She’ll look after you, I’m sure.
Meanwhile the gp could refer you to the community physio team who can teach you airway clearance techniques. Clearing your lungs daily is essential - a) you can’t breathe if they’re clogged with mucus b) stagnant mucus allows infections to set in
I was referred to rehab but have only been able to do 3 classes as the exercises with the weights and sitting to standing have triggered my back problem and my knee problem. So the nurse there has advised me not to continue these classes as affecting my other issues too much .
Thanks for your help x
Oh no, I don’t mean physical jerks, I mean breathing techniques specifically to help clear your lungs of mucus. There are specialist chest Physiotherapists who you can be referred to. Here’s a link with some videos to show what I mean. But it’s not easy to teach yourself, you need one to one tuition to get the best results bronchiectasis.com.au/physi...
Don’t try and absorb all this at once, you’ll have your head in a spin! It’s just to give you an idea
oh …. The rehab kind of teaches you diaphragm breathing and the huff cough thing but I don’t have any sputum or phlegm.
Unless it’s stuck somewhere xx
