How do I find a private specialist to treat Bronchiectasis? I have had so many different antibiotics and nothing works, I am now refusing to take any more. Please, can anyone help? I am willing to travel anywhere but would prefer approx hundred miles within Lincolnshire.
Alemap
Hi ruthalem. Look on the internet for bronch specialists at the big teaching hospitals near you. I live in the Midlands so can't advise on hospitals within a reasonable driving distance from you. Read the profiles carefully then when you find the one that you think has enough experience and specialism go to your GP armed with the name. Tell them that the treatment that they are giving you is obviously not helping and you want specialised advice. Do not leave until they refer you to the person you want. That is the hard bit. Once you have the care of the specialist and their team they will tell your GP which abs to give you, which actually the GP will probably be relieved to receive. They will also be in a position to give abs for you to nebulise or even IV if the infection needs a blow on the head in the first instance. Good luck.
Thanks for the info. Alemap.
Not sure i would recomend you stop taking antibiitcs.
If doctors not got on top of infection rate they need to look deeper into immunty issues.
I too have Bronchiectasis also have igm immunty issues
Curantly my lung doctors waiting to see if kids pneumonia vaccine worked AS pneumonia had hijacked my immunity mainly my igm antibides.
If its not worked am due to have igm antibody jab's
But the holding out as i heard the about £9k per jab
Might be worth taking your antibiitcs and ask to have immunty igm antibidy checked
Depends where you live in Lincolnshire. I was diagnosed at Lincoln but though good they do not have the sophisticated testing equipment that a bigger hospital has. You could try Hull, Peterborough, Sheffield or Leicester. Let's face it, if you live in Lincolnshire you are miles from practically anywhere. It isn't exactly overrun with private hospitals either and you need somewhere that can do the pulmonary tests. As for getting referred, research a specialist and as you want to go privately phone their secretary. I am afraid you just have to persist. I can't believe the number of hospitals down here on English Welsh border. I now go to Bristol and they have excellent facilities. I would love to hear how you get on xx
I`ve been having scans and treatment for eight years now and my cough is getting worse, I`m becoming to believe that they don`t know what to do. I really want to see someone who specialises in this disease. thank you for your reply. Alemap.
In your shoes I'd ask your GP for a referral to Glenfield Hospital, Leicester. It's got a great reputation for treating lung problems and there are at least two bronchiectasis specialists there. Not sure how far that is from you, Lincolnshire's a big county. leicestershospitals.nhs.uk/... nhs.uk/Services/hospitals/S...
Hi Hanne62, Thank you, Glenfield hospital is only about 65 miles from me so that would be great. I will definitely ask my GP to refer me and if he won`t then I will ask to see him privately, Once again, thank you.
Alemap.
Hello Ruthalem, Leicester (Glenfield), is supposed to be one of the best in England. I was assessed there the unit itself is very freindly and can do all tests in one visit to establish a diagnosis. However you want a second opinion on best treatment which would involve a different approach. I would chance Leicester , it took me three hours by public transport to get there. Do you drive as the hospital is just off junction 21A on the M1 or at Groby on the A46. If you travel by public transport, coach or train you have to go into Leicester then there is an hospital shuttle bus that goes out to all the hospitals in like a circular route. If you live near Grantham there is a regular train service which is quicker to Leicester. Hope that is of help to you. Take care and best wishes
Thank you, Katieoxo60, I have been to Glenfield hospital before to visit someone and it only takes about one and a half hours so that would be great. Alemap.
Sounds like your best option of choice, I was seen quite quickly from referral. But was there all day. So best wishes for a quick solution to your problem .
I agree that Glenfield is good, but unless you drive it takes ages to get there from Lincoln, so in North Lincolnshire Sheffield or Hull are easier. Much better for drivers now they have dualled the A46 to Leicester. Unfortunately anywhere is a long journey, although now I come to think about it I think Nottingham City Hospital has a good respiratory department.
Thank you, Carnival567. I've driven to Glenfield a few times to visit patients. Alemap.
You know the way then! Easy to find long way to go. I would be interested to know how you get on xx
ruthalem
I found a private specialist (for a different disease) and he came thro' Google private hospitals. They often list their specialists and what they specialize in. Give it a try it worked for me. Be prepared to pay tho' their charges are often not cheap. Failing that check with the local hospital, they also list specialists, then get hold of their secretary to get an appointment.There are also "trials" usually in teaching hospitals you could try a trawl of your local teaching hospitals, one call often leads to another source then follow the trail. I've had to do the same thing to get something done and eventually it paid off.
IKeith
The trouble with Lincolnshire is that all the teaching hospitals are the ones already mentioned. They are trying to turn Lincoln into one but they are a long way off.
Hi ruthakem. I'm also in Lincolnshire. April may and June my GP gave me 4 different antibiotics for a hacking cough. Sent for a chest xray and he told me it was emphysema. No treatment or tests until I improved. July I was admitted to pilgrim with pneumonia. A cat scan shows bronchestasis. I don't know what's happened to the emphysema but on being discharged I was told an appointment for 6 weeks would be forwarded. Nothing as yet and like you say we don't appear to have a specialist in the area. Hope you find one and please post the name so I can try for an appointment. It's very worrying when your trying to help yourself and getting know where.
Hi chubby2x22. If your follow-up appointment doesn't arrive please do chase it up because they sometimes get lost. Don't forget that the BLF also have a helpline you can ring for advice on 0300 030 555 during office hours on weekdays.
Hi chubby2x22, Thanks for your reply, Pilgrim Hospital is my local hospital and they are so over run with patients you mostly have to wait for six months or more for anything. Once again thank you Ruthalem.
Actually got an appointment this afternoon at pilgrim hope the team know all about bronchestasis. Hope I can ask the right questions a bit down and achy with coughing. Onwards and upwards, will let you know the outcome.
COPD and work ? finding it hard to cope
Where do I start finding info about emphysema and how I can best care for my mum
Another one I’ve not heard before, but again, very moving and true.
Inhalers not working so well
Back to my four mantras..
