COPD and Me: A detailed report.

[Parvati]

Hot off the press- just completed my report back from the 'COPD and Me' event that some of us attended last week at the Royal Society for Medicine. Just click on the link - it will take you to the blog and then click on any article you want to read and the whole page for that article will drop down.

copdinfocus.blogspot.co.uk/

[Suzy6]

Thank you had a quick look. Saved to favourites for when I have more time. Looks interesting and inspiring.

[Parvati]

Thank you for your kind words Suzy

[Suzy6 in reply to Parvati]

So glad I saved it but a couple of complaints, I am enjoying and being inspired so much that last night I was late to bed and this morning I'm still reading.xx

[Hidden]

after reading yer blog parvarti I found it luvvly the things you do for yer exercising and yer on o2, ile say this to you keep at it, wishing you well, and a very long life hope im the same as you n other members when mi time comes ile do mi best,xxx thank you for posting it,

[Parvati]

Thank you 'twiceshy'.

[Offcut]

Well put. Nice to see that the powers are also willing to listen to the people with the condition.

Be Well

[Parvati]

..to a degree Offcut - they still throw their hands up in horror when I mention patients using their own pulse ox . They are really behind the times on this issue here in the UK, and patients are way ahead of them. Oh well .. I will keep chipping away at them

[longlungs]

Hi Parvati really enjoyed reading your blogg ,how lovely to meet other members.Did you travel back to Cornwall the same day ? thats a long old journey one way, I do admire you.I really must start my exercises again,has all gone by the way side Im afraid.My new goal ,to be able to go for a short walk first havnt for a very long time.Keep blogging Parvati you write so well. Janexx

[peege in reply to longlungs]

Yes Jane, she came up & went back in the same day wearing her beautifully decorated O2 back pack.

She's an absolute blooming inspiration!

Thanks Parvati for coming all this way - I hope you've recovered now - plus finding the energy to write your great report xxxxx P

[Suzy6 in reply to peege]

Excuse my bad manners butting in but I think all

four of you are to be congratulated, Parvati, Peeg, Sohara and O2trees. Just extra for Parvati because of the special effort in travelling that distancexx

[Parvati in reply to Suzy6]

Quite right Suzy6! And the more of us that give our input, praise or criticisms on COPD or any other health issues the better - whether at meetings in person, in online surveys or in forums - Patient Participation is the way forward

[Suzy6 in reply to Parvati]

Whoopy now who has the determined attitude Parvati. Love it.xx

[longlungs in reply to peege]

When I went to St Ives the train took 6hours ! Shes a marvel to have done that in the one day an able bodied person probably wouldnt be up for it let alone someone with this blimming disease and on oxy.Looking at her back pack bought a smile to my face all that curling was worth it love her,it looked bootiful. I think all of you were to be admired for making the huge effort as it must have been given this weather and poor air quality. It sounds worth it though.

Off the subject was just remembering saying you were packing up and on the move,where are you going,will you be parlay vousing (scuse the spelling) and joining your family in France or staying here but where

Keep well Peeg glad you said about your'g' being soft i was pronouncing your name with a hard 'g' see you soon Janexx

[peege in reply to longlungs]

haha, there's a lot in a name.

I never thought until I met the girls and thought they were calling me 'pig' or 'peg'.

Several people call me Pee & my surname begins with G. my husband used to call me Peech, one friend calls me Plops (luckily a good friend)!

Yes, our activist Parvati is a marvel, so too is our artist O2Trees coming with tank on her back too from farthest Kent had to get back for an exhibition evening. Dear Sohara came in from Essex while I only had half hour each way. I cannot believe they came so far & deserve a medal.

Hopefully exchanging contracts this week then I can make plans on renting in S France for the winter. They dont tend to do short lets in France. Just long lets or holiday lets. Im hoping to rent someones nice holiday home that they leave for the winter.

Cant wait to start packing, getting things ready for storage & turning my home insideout for a new adventure (my demeanor has changed in the last few days, I was dreading it).

Lucky me, I'm fairly well in the summer, especially now my immune system has got stronger.

It's nice to see you, miss your humour & joi de vie when you're not here. Really hope you're keeping well Jane, P xx

[Parvati in reply to longlungs]

Thanks lung Jane - the secret to such a long journey is that you spend it sitting on your bum happily reading and chatting - oh - such hard work

[Hidden]

Really really well done and thank you. X

[Parvati in reply to Hidden]

Thank you JK - and remember you can do stuff too if you feel so inclined - see response to fibberti above.

[Sohara]

The best part of the whole day for me was meeting Peeg, Parvati , & O2

Especially Parvati & 02 who are totally inspirational with how they cope with there oxygen & the lives they lead. Parvati gave a bit of her story to the audience & it received & deserved a rousing ovation. Anyone who reads her blog cannot fail to be inspired

Peeg as we all know from this site was indeed the wonderful caring & kind lady that I always knew she was

A major benefit of the day is that we have all resolved to meet up again.

Flibberti you are so right re: bronch.

Love to you all.

Sohara

[Parvati in reply to Sohara]

I am really looking forward to the next meeting of the 'Gang of Four' Sohara xx

[Parvati]

How you feel about Bronchiectasis right now is exactly how I feel about copd. I know we have 'pathways' and 'recommendations' that keep coming out of the woodwork lately but these are rarely being acted upon or making much difference in reality - hence the recent all parliamentary group meeting on Respiratory Health and latest sets of recommendations to put things into action (not holding my breath).

In my own case I am - or rather was - a quiet, inexperienced introvert who 'never said Boo to a goose'. It was feeling pretty much like you describe that got me looking for ways to have a say and try to improve the lot of COPD'ers. It began with speaking my mind - firmly but politely - whether on forums, with my own GP's, nurses and specialist, or more recently through my blog. The meeting in London was only the 2nd event I have ever attended - I saw it advertised on the BLF facebook page - I think ALL such opportunities like that should be advertised on here too for all to see.

This time last year I would not have dreamt of attending - but around then I came across the online 'EPAP' course - which is for patients who want to take a more active role or become 'Patient Reps' or 'Patient Ambassadors' for their particular condition ie. it does not teach you about a particular condition but has modules on : 'How to be better informed'/ 'Improving Public Awareness'/ 'Improving Treatment andCare'/ Supporting Research and Development'/ Influencing Policy' / Working with the Media. When you have completed the course - in your own time at your own pace - you will be able to download your certificate and join the EPAP networking group. This lets us know of opportunities or areas of need that we may be interested in - mostly they are not for me - eg. I could have gone on a paid for course in Europe about Pharmaceuticals etc but this is not my area of interest. On the other hand I took the opportunity to sign up to be a patient reviewer for the BMJ - something I would otherwise not known about. I decided to go forward as an independent advocate for COPD - I like not being allied to Breathe Easy or the BLF because it leaves me free to speak my mind without upsetting coleleagues or 'towing the party line'. That is not to say I work against the BLF - I will always support them but with a keen and constructively critical eye.

My advice to you or anyone wishing to make a difference - however large or small - is to have a look at the EPAP course. You do not 'belong' to EPAP or the European Lung Foundation afterwards - you can work on your own or with them, on one small project or many - or do absolutely nothing with it. It is all about making it available as part of a movement to empower all patients and increase Patient Participation in the coming years. My computer is sticking whenever i try to paste anything so i can't give you the address - however if you either read down the patient activist section on my blog you will come to a link - or google European Lung Foundation and have a look on there. Never underestimate what YOU can do.

[Parvati]

Hi fibberti - don't worry - you don't need to be 'sciencey' or a computer whizz - I would never have got through it if that were the case If anything I found some parts boring - particularly the 'supporting medical research' and the 'inflencing policy' sections - but that was because I was not interested in working in those areas. That said - I am glad they are included as since then I have returned to reread the 'policy' stuff as it may be of use to me after all.