Your experience makes you an expert

[BethanyBateman]

Hi all,

If I had to pick a favourite part of my job, it might be working with our Patient Think Tank. (Although I do love it all, so it’s a tough one…)

For those who don’t know, the Patient Think Tank is a group of people affected by lung conditions. They give me feedback about the new ideas we have for campaigns and projects at the British Lung Foundation.

Every two years, I recruit a new group. That’s so that more people can have an opportunity to feed into our work.

This time around, I’m actually recruiting for two groups – the Patient Think Tank and a similar group that I’ll be running for the National Asthma and COPD Audit Programme, run by the Royal College of Physicians. (A rather grand title for what is, in fairness, a very important piece of work. They are reviewing the services for asthma and COPD up and down the country.)

The audit programme is only looking at COPD and asthma, so they only need people with those conditions. But for the Patient Think Tank, we want a wide variety of lung conditions. That’s so we can properly represent the different experiences that people with lung conditions can have.

If you live in the UK (sorry overseas friends!) and have a lung condition - or if you have a friend or family member with one - then you are an expert by experience, and we’d love to hear from you.

You can find out more and apply to be part of these groups by going to surveymonkey.co.uk/r/Patien...

And if you have any questions, you can either pop them on here or call me on 020 7688 5557.

All the best,

Bethany

[Hidden]

I like putting my too pennies in ANYTHING so would like to take email part if possable have lot going on.

I have few ideas re antibiotcs broncal plaques causing infection like ilocal inflammation weezing.

Curenrly am having tough time with revolving symtoms acid fungus oral thrush antibiotcs and troat issues and bronchial plaques.

Thrilling eh but all relavent if suffering COPD or AsTHMA

Curently given lung material plaques given good eyeballing under my microscope am looking at inflamed bronchial mucus membranes THINK called i have sheed coughed up.

Am thinking MY lung doctor needs to talk to ENT doctor as to rule out nodulat tracheobronchitis would been nice if lung doctor had looked at my pictures of mucus mambrains .

So am hoping i have not been colonized by aspergillus given my fungus issues and its that causing my throat issues.

Think lesson here is other profesionals should read share information AND not assume things will be read.

Guess am hoping is just simple bronchial plaque AS if they ant bad enough

[BethanyBateman in reply to Hidden]

I hope that means you're going to apply to be on one of the groups. You clearly have a wealth of different experiences.

I hope it's not aspergillus too. And that you're able to get your doctors to talk to each other to get you a proper diagnosis. Good luck!

[Hidden in reply to BethanyBateman]

Hi Cheers defo hope its not aspergillus myself HAVEtried looking under microscope and did look like candie.

Guess am lucky its not on chest BUT think thats down to triagulates in washing up liqued i wash my nebuliser stuff in

triagulates are things that disrupt fungus growth YOU ever seem old empty house with washed plates EVER wondder why only moldy where finger marks are well that triagulates for you.

Be intresting to here how many use washing up liqued to clean nebulisers bits and have been colonized

And how many use stererlising fluid to clean bits have been colonized.

I surspect latter would of been more ANYWaY sure its just plaque crusty mucus membrain

[Erin001]

Hiya, I'm 17 with brittle asthma and I'd quite like their to be more support groups in my area there is only one 'Breathe Easy support group'

thats only every second Monday of the month and I can't even do that one because it's a Monday during college hrs

So I don't know who to ask so I thought to ask you for more

Because I love HealthUnlocked because of the community feel to it and the supportive people but I'd quite like to meet people and I don't care how old they are because I will still be supported and I will be able to support them like I do here

Sorry for the long message

[BethanyBateman in reply to Erin001]

Hi Erin! I'm really sorry you can't make your local Breathe Easy group. For various reasons (not least of which is that the groups are run by volunteers) it's not easy to just set up new groups, although we'd love to have loads.

I was about to ask if you wanted to call me but I've just discovered that we're having phone problems in head office. (Don't you love technology!) I'm going to ask some questions at my end and get back to you. Is that ok? I'll probably PM you rather than posting on here.

[Erin001 in reply to BethanyBateman]

Yes that's fine thx very much it's just I love helping people on here and it would be nice to be able to meet people face to face with similar issues and get support from that too

[Hidden]

I've signed up Bethany but because of mobility problems I can't travel.

[greatauntali]

I have signed up as well but like poemsgalore1, I am unable to travel.

[adb11]

I would love to do it again Bethany, it is one way I can help at a distance. I leave it in your capable hands!

[ross-35_]

I have just noticed this . so if I am too late.apologies. I had stage 4 emphysema and at 65 was very lucky to pass the Lung Transplant assessment. So if you need any help in that area, I am here.I help COPD groups if someone is thinking of transplant. Sandie