Today turned out to be a really interesting day. I attended a Workshop organised by BLF North-West along with about 20 others where we discussed various issues concerning our relationship with our condition. Topics discussed included when did our condition first manifest itself to what help was/is your GP with managing your condition. Also discussed were "BreatheEasy" groups and whether they needed to be more localised making them more accessible for people who can't travel long distances. Also what would we like to see, in the way of activities, at the groups. Suggestions ranged from carpet bowls to singing groups. Also mentioned, in relation to on-line forums such as this was "Would you rather remain anonymous online or would you rather be on a more personal basis. It was generally agreed that anonymity was desirable in the initial stages of posting and then pm's where both parties consented. Which is pretty much where we are now anyway. At the close of the session we all felt that something useful had come out of our observations and we look forward to seeing the finished report when it is published. Many thanks to Jeremy, Katie and the rest of the team for an interesting and thought-provoking time. And it made me wonder, and I am probably opening the floodgates here(!) but is there anything that BLF could do in your area to make your quality of life easier through BreathEasy groups etc?
I feel sure that after todays workshop BLF would welcome your observations and comments whatever stage in your condition. Mark Pilling's finger is hovering over the delete button as we speak..haha! Have a good day. Regards-Dave.
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Yes it was fun informative and gave food for thought.
Hi, svety! Hope you got home OK. It was lovely to meet you both. I have had a lady called Angela get in touch with me after my Facebook comment on the BreathlessChoir and they are called "Lungs Aloud" based in Farnborough , and she tells me that they use karaoke equipment? Do you use a pianist and sheet music? See you in the New Year? Kind regards= Dave
Hi baseman, I run the Breathe Better Sing Together group in south Cheshire. I use a laptop and a pico projector to screen karaoke style songs and play vocal exercises by Kim Chandler. I also use a roll up piano for pitching and a capella songs. As I am a church organist I can use keyboards but find these difficult to play while leading the group. For more information about the group, visit breathebettersing.uk
Hi, Billiejean_2, How are you doing? I hope you are feeling better and the docs have got their act sorted out with the meds. To be honest, it was as much for me as it was for the other posters. I just responded to Mark's search for anybody in the North-West. However, if anybody has any input into what would help them with their condition, via Breathe Easy groups, actvities etc, I'm sure BLF would welcome their comments. Do take care, and give those docs some gyp until they get you sorted! haha! Very kind regards-Dave. x
Still struggling a bit Dave. Conclusion is that my drugs were dropped down too quickly over the last 48 hours and I've been put back on the Combivent nebs instead of the Spiriva inhaler. Doctors love to differ don't they ?
Hi, BillieJean_2, yea but why does it have to be at the expense of the patient? ..."I'm a practising doctor..Well, come back when you know what you are doing"! Do you remember James Robertson Justice in "Doctor in the House" and was it Dirk Bogarde played Dr. Simon Sparrow? There still seems to be a bit of that still going on in hospitals these days. It all appears to be an ego trip still, for some doctors. Grab their ankles, Billiejean and and don't let go until they make you well! Now there's a picture to conjure with! Take care..talk soon. Very Kind regards-Dave from Blackpool. x
Hope so, clematis5932. At the end of the day-not my most favourite phrase- it's as much down to you, the posters, as it is to me. I hope I represented the feelings of the majority. One of the problems was when it came to GP care. There seemed to be a split between good GP care and bad GP care. Pretty much as you might expect, I suppose. Having said that, as a member for only a few months on this website, I did tend to put a personal slant on it. But whilst we dealt with the diagnosis and subsequent after care, there were still areas in aftercare that we would welcome comments on. For instance, clematis, what would you like to experience in, say, BreathEasy groups that would help you on a regular basis? For more info see my original post. Kind regards-Dave.
Whereabouts are you, Toci? Out of about 20 people at the workshop, I was the only HU online member. All the rest were from BreatheEasy groups. Having said that, it was North-West England. But I do get the feeling that BLF are seriously concerned about aftercare and are hoping to localise centres for people who can't manage to travel any great distance. Talk soon?Regards-Dave.
I wonder of the BLF would consider meeting Doctors at their surgeries, and give chats etc. I can only speak for my area, but there seems to be very little in the way of local, breathe easy or PR Courses ?
Hi, SquirrelsHolt, Strangely enough, I was talking about this with Katie Merrick who is the BLF's North-West BreatheEasy Co-Ordinator. One of the subjects that came up was for more localised BreatheEasy groups, and I even asked about the possibility of working within docs surgeries. Nobody has been in touch, as yet. Perhaps if Mark Pilling sees this post he may wish to get back to us? Hope this helps.
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