specialist bronchiectasis consultant wanted

[Seagullcity]

Many of you suffering from bronc seem to have access to an expert in this condition. My gp says that, if I can provide him with the name of a specialist, he would be happy to make me a referral. I live in Eastbourne and wondered if any of you can recommend someone within reasonable travelling distance?

[Dottie11]

I do not have access to a Broch expert just general Respiratory. I am sure someone will be along to help. It is important to see someone who knows about this condition. Good luck.

[Swizzy]

The best thing that you could do is to look at the websites of the large teaching hospitals that you can get to. Find a bronchiectasis specialist on there and take the name to your GP. You could also give the specialist's secretary a call and ask if they will take you on if you get a referral from your GP. It never ceases to infuriate me that GPs are unable/too lazy to find the right specialists for their patients. Let us know how you get on.

[janedivney]

Don’t waste time with local general hospitals when your gp can refer you to one of the best chest hospitals in the world ie Royal Brompton in SW3. Their Host Defence Unit is dedicated to Bronchiectasis and led by the brilliant Professor Michael Loebinger. He’s not the most communicative of people but a leading expert on bronch. It’s a manageable journey from Eastbourne. See the best person you can!

[Jk1957 in reply to janedivney]

Hi Jane . I live in Ireland & continually read on the Forum about Brompton & unit dedicated to bronchiectasis . If I was able I’d try & get a referral there . I often wonder what different approach they take or why are people better after going .

I have a good Respiratory specialist but as no treatment other than antibiotics available what could they do to help .

I use saline & acapella & am on azithromycin 3 times a week but still get a lot of flare ups & bleeding . I would try & get a referral if I was convinced they could do anything different for me . I’d love to get your most valued opinion .

I’m not convinced there is anything else any Dr could do for me & am looking forward to new treatment drugs hopefully by 2026

Thanks for all the wonderful information you & others give so graciously always on this wonderful forum

[Alberta56 in reply to janedivney]

I thought Royal Brompton too. Decent train service from Eastbourne, then a probably horribly expensive taxi ride, but worth it.

[Germantara]

Very surprised he doesn't know of a one but at least he willing to you're suggestions I don't know of any sorry but maybe someone else can

[whit]

There should be one in your local hospital, and surely your GP should know

[Seagullcity in reply to whit]

Thanks Whit, and everyone else for your replies to my request for suggestions. I guess the one in my local hospital is the consultant who diagnosed me in late Spring, implied there was no available medication and told me to learn to live with it and manage it. I haven’t heard from her since and, frankly, I’ve found this forum much more supportive, informative and helpful. S

[whit in reply to Seagullcity]

That consultant should be locked up,

[xcindyx in reply to Seagullcity]

Yes, same thing happened to me. Constantly had chest infection doc didnt want to know and because other antibiotics stopped working and I was desperate, sourced my own azithromycin and improved my quality of life no end. Seen DAIRS nurses this week and they weren't impressed with me saying azithro is a last resort antibiotic and I may have destroyed my liver and heart taking it. But like you say consultant said you have to work it out for yourself and manage it. Use nebulizer with saline as well. You are right we have to learn to live with it, difficult knowing that you will never get better.

[Dottie11 in reply to Seagullcity]

Likewise. x

[Coughingalltheway]

I would strongly recommend looking at the London hospitals as others on here have suggested. I know that it's a bit of a long journey but the expertise is second to none plus they often have specialised scanning equipment that is not available at local hospitals.

Good luck x

[Seagullcity in reply to Coughingalltheway]

Yes, it would be quite a trek to the Royal Brompton but I’ll look into it as it sounds like that’s where the expertise is concentrated. I found the Montefiore Hospital in Brighton and Hove, which also specialises in lung conditions. What puts me off if the price tag advertised for first visit and further visits. I’ve never gone private for health treatment, but it’s something I may now need to consider. If I managed to get a referral to an expert via my gp, will the nhs cover this? Apologies if this is going off piste….

[janedivney in reply to Seagullcity]

I wouldn’t go there other than for an initial consultation, because you’d need all sorts of tests, microbiology etc - it would be ruinously expensive. I know of someone who used to work at the Brompton (where I met her) and is now a consultant at the Royal Sussex County, specialising in bronchiectasis & cystic fibrosis. That’s not far for you. Shall I pm you with details?

[Seagullcity in reply to janedivney]

Yes please, if it’s no trouble

[Coughingalltheway in reply to Seagullcity]

I believe that you're now entitled to request any hospital that you choose on the NHS. I didn't realise that you were considering going private but if I were you, I'd try the NHS route first. The other thing that I've come across is that the London hospitals don't seem to have such long waiting lists in comparison to local hospitals. Perhaps because that's 'where the action is?' so to speak and doctors want to gain their experience there before going private? Who knows...

[Seagullcity in reply to Coughingalltheway]

Thank you for all your sound advice, S

[janedivney in reply to Coughingalltheway]

I think you’re definitely right about the waiting lists, though even there they seem to be getting longer

[wheezybronch]

I am sorry but I do not know anyone in the Eastbourne area but I attend The Lung Defemce Clinic at Papworth Hospital and have been going there from 2003. My favourite consultant is Helen Barker.

royalpapworth.nhs.uk/our-se...

royalpapworth.nhs.uk/privat...

I am also under the Sleep Clinic for OSA and Tracheobronchomalacia, many bronchs are under the sleep centre, they give respiratory support, I am on a NIPPV (Nippy) Bi-pap.

They have a multi disciplinary approach to their patients and physios are included. Your doctor can write to Helen Barkers secretary or any consultant he considers suitable for you. I am an NHS patient. You can attend for a 1/2 day appointment where many tests are carried out, I was impressed when I got a diagnosis and a comptrehensive plan to go forward. Once you have a diagnosis, and maybe a plan, papworth can possibly refer you to a local respiratory hospital. I wish you good luck!