I have had Bronciectasis and Asthma for 28 years and would like some advice on the best hospital/consultant in the UK?

[Rattle10]

Hi all, as I said above I have had Bronciectasis and Asthma for many years. I have recently deteriorated and the current treatments aren’t really helping. I would really like to be able to go and see a consultant who is working with or trialing the latest treatments. I live in the south west but I am happy to travel anywhere in the Uk. Thank you for your help.....

[Hidden]

Hello Rattle10. I’m sorry that you are struggling at the moment and understand your wish to try something different. I am a lifelong bronch, diagnosed at 3 and now nearly 69. I gave been lucky enough to be with the bronch specialists at the QE in Birmingham but that is a long way for you, as are the centres at Leicester, Liverpool and Leeds which I believe are very good. Southampton have a good bronchiectasis specialist. The Brompton in London is the one everybody recommends but they are very overloaded and actually came to bronch specialism after some of the other centres. I would suggest that you look at the large teaching hospitals in the South West for a bronch specialist- not a general respiratory consultant. If you can find a name take it to you your GP and insist on the referral. It is always better with bronch to be closer to your main centre in case a situation arises where you need in patient treatment such as IV and don’t want to find yourself in a local hospital where they know very little about bronch.

Bronch specialists are experienced in all of the varied treatments available to non cf bronchs and as you must know after so many years, bronch is so complex and everybody so different that this means a lot of ‘suck it and see’.

As for trials- these can be a road to frustration and let down. I have taken part in many trials over the years and none of the drugs have come to be used by us. I trialled a couple of drugs which have been adopted for cf but refused to us.I trialled nebulised in 2009 specifically for non cf bronch.It so obviously worked but for hidden reasons the FDA still refuses to licence it.

A good centre will be running trials from time to time and you will be incited to take part if you fit the criteria.

Good luck with your searching. Do let us know how you get on.

[Rattle10 in reply to Hidden]

Thank you so much Missycarlet,

You certainly have a good insight having had these conditions since you were 3. I will definitely start doing my homework and looking locally at the teaching hospitals. You are absolutely right about having treatment close to home, as I have had to previously IV treatment.

I will keep you posted on how I get on. I really appreciate your help and everyone in the community. Many thanks x

[Hidden in reply to Rattle10]

You are welcome. This exclusive bronch club know only too well the puzzle that is sourcing the best treatment. Of course the Brompton bronch team are excellent but it is that problem of local inpatient needs. I am a distance from the QE. Luckily I have avoided IV since 2015 when I had a community aquired pneumonia and empyema. They have no home self IV arrangements. My local hospital are willing to do it but don't really know me and now the con who wad cooperating with my con in Bham has retired! At least I can talk to my con through her sec whenever I need but the system is not good. I do hope that you get fixed up.

[Carnival567 in reply to Rattle10]

I go to Southmead in Bristol and am very happy with my bronch specialist

[Rattle10 in reply to Carnival567]

I will definitely look at Southmead. Thank you

[monju]

Morning Rattle 10, I have been with Royal Brampton for the past five years, under Dr Meniz team. They are the best and work with you all the way. I would strongly recommend you try them. ♥ 🤞

[Rattle10 in reply to monju]

Thank you so much for your reply. Take care 😊

[Rattle10 in reply to Rattle10]

I have heard that the Royal Brompton is a fantastic hospital. I will see if I can get an appointment. Many thanks 😊

[Hidden]

It was nebulised ciproxen which I trialled

[Rattle10 in reply to Hidden]

Thank you

[May15]

I see Dr. M Al-Aloul at the North West Lung Centre in Manchester for my bronchiectasis and have done for 13 years. Xx

[Rattle10 in reply to May15]

Thank you for your reply. I it’s really helpful. Take care 😊

[Hidden]

If you are going to try the Brompton I suggest that you take a look at the current guidelines for the treatment of bronch. The co chairman ( along with my consultant) is a professor at the Brompton. I have a feeling ( without checking) that he is the person already recommended to you.

[Rattle10 in reply to Hidden]

Thank you I will check x

[GintyFerguson]

Adam Hill , Edinburgh Royal Infirmary. Absolute whiz of a man when it comes to bronchiectasis . He is head of respiratory clinic and also very personable. Committed to research on the subject too. There are some very expert staff in his department. I don't know if you could get private treatment from him. Good luck.

[Rattle10 in reply to GintyFerguson]

Thank you for your recommendation, it’s very much appreciated.

[Ortho10]

I would be interested to hear what medication you are now taking.

Also, as you are in the South West, are you under care of the team at Bristol?

[Rattle10 in reply to Ortho10]

Hi Ortho10,

Thank you for your message. I am currently being treated with Doxycycline (since January bar 2 weeks ) ventolin and Seretide inhalers, Montalukast tabs, Carbocisteine (6per day).

I am currently being treated by my GP and have been seen in Bristol previously.

[Ortho10 in reply to Rattle10]

Thanks for the reply.

Having the same issues as yourself, my Consultant changed my Seretide to a Pulmicort inhaler, which has worked wonders for me.

[Rattle10 in reply to Ortho10]

Thank you for your reply. I will suggest Pulmicort inhaler to my GP. Thank you

[gillypotter in reply to Rattle10]

HI rattle 10,

I see a consultant at lister hospital, and l think they are all good. There is no cure for bronchiectasis, but l find inhaling saline via my nebuliser helps keep infections at bay. Drink plenty of fluids.

[Rattle10 in reply to gillypotter]

Thank you, for your reply

[Gavdroid in reply to gillypotter]

I am under Lister too, Dr.Wilkinson. I have been referred to Papworth Lung Defence team.

[eccosse]

Mr. Musoli at RD&E was my consultant at Derriford Hospital is brilliant as is Dr Patel who has taken over from him at Derriford These guys and their team are the best I have found in your area of the South West Itoo suffer from the same and have felt my health improving with their help as I have suffered with it for nearl 20 years now

[Rattle10]

Thank you eccosse, it’s good to know there are really medical experts in the South West. I will do some research, I feel though I should probably be looking close to Bristol incase I need immediate medical intervention. Thank you

[Normc]

I don’t want to bang on about this as I have mentioned this before. Someone on here posted that seretide can cause increased number of chest infections on a SMALL number of patients. I was one and following this posting in 2016 asked for it to be changed. I went from 11 chest infections(& anti bio’s) in 11 months to 3 since Dec 2016 when it was changed. It mentions this affecting a small number of patients in the leaflet in the seretide box. Suggest you ask your doc about this & find it in the leaflet to show him.

[Rattle10 in reply to Normc]

Thank you, I will have a look at that leaflet and mention to my GP.

[Fionafish]

Hello Rattle10, I see Dr David Smith at Southmead Hospital in Bristol - he is the main or one of the bronch specialists but not sure if he is trialling anything. I was seeing him every three months but now its every six months as I'm supposed to be on long term ABs but it hasn't really worked out so I am not taking anything now. Good luck

[Rattle10 in reply to Fionafish]

Thank you Fionafish. You are right about seeing a consultant close to home. I will have a look at Consultants at Southmead. Take care and keep well

[Craig_d]

Wythenshawe Hospital

North West Lung Centre

Good luck 🤞 C.x

[galathea]

Southampton hospital was named as a national centre of excellence for asthma afew years ago. I have had great results from going there. uhs.nhs.uk/AboutTheTrust/Ne...

Xx