Hello everyone
I've been struggling with a number of lung issues over the past few years, but am going round in circles with my local hospital 🙄 I am therefore considering a referral to the Royal Brompton hospital, which appears to be the top lung department in the country. Is anyone being treated there? Any experiences/advice about the hospital gratefully received!
Yes Im on their books but havent seen them this year as they cancelled my phone appointment in the Spring and re-scheduled it for next year. Luckily Ive been well so that didnt really matter.
The twice I have gone to appointments Ive seen a different registrar in the team each time. They are considering coils to treat my hyperinflation but have said probably not yet but to stay in their system. They were kind and thorough but didnt really have a lot to say.
The Brompton runs lots of trials which I had hoped to be considered for but they usually want patients with one clear condition to qualify for them and since I have three, I have been turned down.
But worth getting referred if your local hospital isnt coming up with the goods.
HiThanks for your quick response. Not sure whether I'm encouraged or not!
I’ve been treated by the Brompton for the past 10 years. They are very good. As the other person said as they have such big teams you may see different people which can be both good and bad. They have some of the top people in the world there which is great. They run a joint team with my local team so I don’t have to go there so often only for special tests, I just see them down the road. They have specialised lung function machines that they have developed themselves which is excellent for my very low lung function. On a more trivial thing if you have to stay in the food is quite good too and all the nurses I’ve met are lovely.
Hello, and thanks so much for the encouraging reply, not least for the thumbs up for the food. I have just requested a GP appointment to ask for a referral. Thanks again 😊
Yes I came under the Brompton wing in June, so only by phone. The treatment has been first class, I have a clinical specialist nurse who I can email or phone during the week and she usually gets back to me the same day. I'm very happy with them.
Hello and thank you so much for your reply, which has encouraged me to go for the referral.
I’ve been with the Brompton for nearly 15 years, and have had LVRS, taken part in a couple of trials, and many consultations. I would say they are one of the best hospitals for lung disease. Go for the referral, they are very good!
Hello and thank you for your reply. Very encouraged by all the messages, so will be asking for the referral!
I'm a relative lung novice, so what is LVRS?
Lung volume reduction surgery.
Hello GB, I have been with Royal Brompton for 5 years, the first three on trials. The next year I joined the normal clinic for my 6 monthly check ups. Like most appointments they are probably scheduled for 10-15 mins but I have never been rushed and found the doctors very good and thorough, and as Suzie said earlier the specialist nurses are brilliant and reply to emails/phone messages very promptly.
My last appointment in March was obviously cancelled, and I had a video call with a doctor in October which was great, not rushed, and he a answered my questions.
I hate the journey to Kensington, by hospital transport, but it’s worth it.
My local hospital and outside medical help seem to know very little about IPF, so again I’m happy to be with the specialists.
In patient treatment also very good and staff caring and friendly.
Good luck with the referral. Jax
Oops seems to have gone to bold type, now how did I do that lol !
Hello Jax.
Thank you so much for your detailed, and encouraging, reply.
I have had a few other similar replies, so have just requested a GP appointment to ask for the referral. Should have done so ages ago! My local hospital is just taking the piss, to be honest. They are under great pressure, of course, but when they fail to call you at the scheduled appointment time, without explanation, and you are told the system says you "attended", one knows it is time to accept defeat...
I am so sorry to read that you and your family have experienced so much lung-related trouble and tragedy, but I admire your positivity.
I'm trying to hold on to mine, but it is proving difficult, not only for health reasons. A firm diagnosis would help - I have had several pneumonias over the past three years, which has left significant scarring they tell me, by which I think they mean pulmonary fibrosis, but no one's used that term. Costochondritis and bronchiectasis have been mentioned, but not to my face, only in the GP letters, from which I gain most of my information!
Anyway, I've gabbled on long enough. Thanks again for the message.
Best, GB (Kevin)
Hi Kevin, I look forward to the hospital letters, they are so informative, it’s amazing sometimes what you discover about yourself!Get the referral so you can go forward and get a firm diagnosis.
Stay strong and safe. Jax
Hello Jax
Yes, despite deciphering the content of these letters, they are often the best way to find out what's going on. Often I think "you didn't say that during the consultation".
I've made the GP appointment now.
Hope you have had a good day.
Best,
Kevin
I’ve been a Brompton patient for over 50 years. It’s a lot busier nowadays to what it used to be. I’ve always received first class service and still do. They aren’t doing any face to face appointments at present with their regular patients but I don’t know the situation with new patients. They are still doing tests etc if needed. Btw. I agree with another comment regarding the food, it’s very good. Joy.
Thanks, Joy, for your reply. Wow, over 50 years - you are quite the veteran! All the replies I have received have convinced me, so I'm speaking to my GP next week to get a referral. Thanks again, and he well 😊
Hello Grouchy Bear, I have a video consultation with the Royal Brompton next week! Am getting very nervous. I would be really grateful for any advice IE what questions to ask! wish me luck in the hope I will finally get some help! Good luck to you getting referred! 🙂🙂
Thanks for your message. I have a GP appointment next week to ask for referral, hopefully straightforward. I haven't had a video consultation yet, but I would prefer phone or face to face, eventually! I can only suggest what I do for every appt, write a list of questions/topics beforehand and then try to control the discussion and not let the consultant rush you... Hope that helps and good luck 🤞
I have very bad brochiectasis & two other lung problems. I saw a lung consultant at the Brompton for a 'one off' consultation. He got my CT scan from my normal lung specialist at another hospital. He studied it and explained it in depth. He was was brilliant and did a comprehensive report for my doctor. He filled two pages which outlined 'plan of action' with 4 points to follow.
Thanks for your reply, and another encouraging one re referral to Brompton. Speaking to GP next week about it. I'd do anything for a proper diagnosis right now! Best of luck with your 'plan of action'.
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