Basically, as above. I've been referred to the Brompton by my Consultant with a view to possible Lung Volume Reduction. This was around mid May and I've yet to hear anything. I have tried to call the Brompton but it just rings out. I've completed a Pulmonary Rehab course, so there wouldn't be a delay due to that.
I was wondering if anybody had any dealings with the Brompton who may be able to advise if this is a normal waiting period or rather excessive.
Thanks
Good morning Happerstad. I don’t know the Brompton but I suggest trying a couple of things.
If the number that you have for The Brompton is the central booking number try looking for the number of the department to which you have been referred and ringing them directly.
Or, give your consultant’s secretary a ring and tell them the problem and ask them to check that the referral went or to get the consultant to chase it up.
My sister was referred to Southampton for sleep apnoea and twice she found that the referral had gone astray. She had to chivvy and keep phoning all concerned but eventually got her appointment and cpap machine.
Good luck.
Thanks for that. I have no idea what department he has referred me to, so I can't try that one, but a good idea to call the consultants secretary, I should have thought of that myself.
Cheers
Hi, I was referred to the Brompton recently. It took them about 10 weeks to contact me, and I was getting so concerned that I called the consultant secretary, who confirmed the referral had been received and I was in their system, gave me my hospital number, and put me through to appointment team. Everyone very helpful, once you can get through to someone. My appointment came through for 3 weeks later. I'd recommend calling the consultants secretary, they are very helpful in my experience. Good luck
Mandy
Thank you Mandy, that's very helpful.
I was referred to RBH last year at the beginning of May. By the beginning of September, ie four months later, I was starting to wonder. I contacted my local consultant's secretary who immediately sent the referral letter again and all the documentation. A few days later I got a phone call and an appointment for 25 September. Then there two more appointments, in November and in December. I am due to go again, but they have done what my consultant wanted, which was to diagnose the small airway disease so I am not particularly concerned. My Lovely Lung Consultant is now back on my case. I think RBH is flooded with referrals and there is a huge backlog.
Thank you. I will call the secretary.
I think they are very busy, it is better to send an email to the department secretary you are being referred to.
Not sure of the department tbh. I have heart problems too, so it may not be straightforward.
Yes..it should be on the GP or consultant referral letter..
Oh, I'll re-check the letter, thank you.
Hi there I'm under the Brompton .I was referred there last October saw a consultant in Oct and January ,then went information two days in February to see if my lungs were suitable for an op and which LRVS I was going to have if any .The upshot is they were suitable .I met with the surgeon in may and was told I'd be in hospital in a matter of weeks .This dragged on they had a lot of emergencies staff off sick etc and I finally got my appt for the invasive LVRS for September 10th .........but I am now in the throes of the dreaded chest infection and surgeon said too dangerous to operate now so I'm now scheduled for 10 th October.They are normally pretty quick so maybe they are extra busy .You won't get anywhere trying to phone !!!! Hope you get sorted soon .
Love Babs ❤️
Thanks Babs. I've spoken to the consultants secretary and she said she'll ask him to write to them again. Hopefully that may get me somewhere. I'm keen to get up there, what with it being a specialist heart and lung hospital, as I've had two small heart attacks, the first of which emphasised the Emphysema issue. I was hoping they may have another solution or even revised medication ideas, before any openings was necessary.
Hi Babs, Sorry you have been Delayed to Oct. I do wonder how your getting on, without looking at your previous comments , did you say your going to have this Op instead of the valve Procedure like myself ? Sorry if I got it wrong. Hope you can Clear up the Chest Infection. Lots of Love . Carolina XXXX
Hi Carolina yes I'm having the more invasive LVRS hence why the surgeon said it would be too dangerous to operate too soon after so let's hope my emergency pack sorts it out soon .I was mentally tuned in for Sept but cest la vie I will get there .
Love and hugs to you
Babs ❤️❤️❤️❤️
Try emailing Eva, she is in the PALS patients dept and very helpfull
E.Cartwright@rbht.nhs.uk
Thank you Peter, I'll try that.
Happerstad
Hi, I too got referred to the Brompton by my specialist in Brighton. However I did try for a "trial" in the meantime. Overall I did not have to wait too long before an appointment at the Brompton. (Unfortunately it all proved to be a wast of time for me as my lungs are well past it). They do the tests on site and seem fairly thorough so their conclusions are clear and to the point & accurate. You could try to get a copy of the letter from your specialist to see what Dr they have referred you to, then chase that dept on a very regular basis. At this time of year they will tell you that many of the Dr's are away (Holidays and all that, emergencies are taking the top billing at the moment and other treatments will take a little longer to arrange, still chase them). Meanwhile do some of your own research, use the web also search "trials" nationwide they may give you some earlier leads, but they will still test you. Also search lung valves & coils, they are unfortunately 2No separate providers but each has a list of hospitals that carry out the treatments. Get your local specialist to refer you to another hospital.
IKeith
Thanks for that information. I'll definitely look at trials.
I know I am a bit late in this reply, but I would contact the consultant who referred you, maybe it hasn't actually been sent off. I was referred to the Brompton and it came through really quickly, but I had to chase up the referral as the gp was really slow in sending it off. So check with the consultant. Good luck.
Maggie
Ok Maggie, thank you.
I am going to the Brompton in Oct but believe me I bugged them got my doctor to my lung specialist keep ringing I did and I'm seeing them Oct so keep at it
I'm late updating this. I did get to the Brompton eventually. Had scans and tests etc. but ultimately the consultant there said that my lungs were damaged in the wrong area for valves to be of any benefit to me 'at this time'. He did give a thorough explanation and I've since been discharged by my local consultant, which is fair enough, as there's not really anything they can do for me either.
So I just have to keep myself as fit as I can and if or when anything changes for the worse, I get myself referred back locally and go from there.
Day to day, it varies. Sometimes I can almost feel as if nothing is wrong and other days I struggle with my breathing if I do so much as pick up a teaspoon - today was such a day and all I've done is hung out and brought in some washing and walked about 200 yards to get my flu jab.
It is what it is.
Released from Hospital
update on hospital visit
Back in Hospital with this nasty infection.
Brother in hospital with pulmonary fibrosis 
