For folks with Bronchiectasis - EMBARC

[cofdrop-UK]

bronchiectasis.eu/registry

If you have non cf bronchiectasis and are interested in taking part in trials for iABC (inhaled antibiotics for bronchiectasis and cystic fibrosis then please ask your consultant for the Patient Information Sheet regarding EMBARC and a consent form.

The more people with non cf bronchiectasis they can get on the Dundee database the easier it will be for them to find more follks with the right criteria to participate in a particular trial. Once your information leaves your consultant it will then be anonymous.

love cx

[Hidden]

Bumping this up cofdrop, for more to see. EMBARC is a fantastic initiative by European bronch consultants who understand the crucial need to improve and standardise treatment for bronchs and it's in OUR interests to get behind it.

Many people here seem to receive appalling treatment, but cannot get to a specialist hospital like RBH so, please, ask your consultant to sign you up, and help ensure we all get the same wonderful care that sadly only a few now receive.

Thanks again cofdrop, glad you're on the case!

[cofdrop-UK in reply to Hidden]

Bump away hun and thank you for pointing out just how important our involvement is in assisting the forward thinking consultant taking part in the iABC to improve the lives of people with bronchiectasis. EMBARC and ELF/ERS are intertwined and we need to be involved if we want better treatments, knowledge and to raise our profile which may lead to better funding.

I'm in - how about you!

Love cx

[Hidden in reply to cofdrop-UK]

I've asked my consultant to sign me up & am awaiting the info sheet & consent form. Even if not suitable for any trial, it's important they have all our details so they can standardise treatment throughout UK & Europe and - most importantly - obtain funding.

Don't know about you but I'm sick of being told "sorry, we only have funding to provide home IV services for CF & COPD" etc etc. Er - and exactly how much does it cost to keep me in hospital for 2-3 weeks when I could be at home??? Also, getting stuck on a general respiratory ward when anyone who is colonised should be in a separate room (for others' sake as well as ours!). It's crazy, it needs changing, and THIS is our chance to get it changed.

[cofdrop-UK in reply to Hidden]

Absolutely and that's when you get to a resp ward after A & E and an assessment ward where you can miss a couple of days of treatment and risk cross contamination. One doc on an assessment ward wanted to take me off all my inhalers until seen by resp. Can you believe it? I told him 'you can't do that'. Huge gaps in knowledge which could be harmful.

Anyway I'm done with moaning about it I am in doing mode although my lungs are telling me different at present. They need us on board and as you say this is our chance. If we don't get involved we will not be invited to participate again.

love cx

[Hidden in reply to cofdrop-UK]

Me too, it's time for action. Not easy if you're not well though, so you must still do this around looking after yourself! Agree about assessment wards, beds far too close together and what b***** use to us is an on-call dr who's a gastro-enterologist or some other irrelevant specialty? One time I had a geriatrician, who said "oh, don't I know you?" and we both realised he was a client of mine. He seemed quite embarrassed, asking me to lift my top up, but as I pointed out, we women are used to "getting them out" for all & sundry

[cofdrop-UK in reply to Hidden]

He he - such a hussy You have to leave you dignity at the door in 5* and pick it up on the way out!

cx

[Billiejean_2]

Will certainly mention this in a few weeks when I next meet my consultant but I have a feeling that they just won't ( or won't want to be bothered) knowing anything about it.

[cofdrop-UK]

Hi Billiejean

Good on ya. I'm not sure if all hospitals have a site investigator but if we all know about EMBARC then your consultant certainly should. If he is not involved then perhaps you could suggest he/she might want to contact an adult cf centre who will have one or they contact Dr. James Chalmers in Dundee. All your con would have to do after you have completed the consent form is pull out the relavant respiratory information and send it to the site investigator. From there it will be sent anonymously with only your hospital number to Dundee.

Worth a try. Good luck hun and I hope your consulation goes well.

love cx

[Hidden]

As it happens I am both on the EMBARC register and live near Dundee. I am very heartened with you comments , Hanne and Cofdrop and Billiejean, concerning the problems about hospitalisation, about professional indifference. I know James Chalmers and his team in Dundee and am part of a local initiative to set up a non-CFB patient support group. We seek to highlight the particular identity and issues linked to bronchiectasis as well as the perceived neglect of the medical profession echoed by the comments in this thread.

I shall keep your readers posted about the progress of our Tayside group and am grateful for this opportunity to express my thoughts about the common problems we all share when we are at the coalface of the NHS.

[cofdrop-UK]

Really good to hear from you terrymate. Your post is really interesting and I certainly look forward to hearing about the progress of your Tayside group. I wonder if you have a role within the ELF Patient Advisory Group as your comments ring bells with me.

love cx