After being told i had to wait until late August for an Ambulatory O2 assessment and brooding for a week or so i decided to turn anger into action,phoned my long term conditions team and complained that this was an exceptionally long wait and well over the national guidelines of 6 weeks between referal and appointment..Sorry nothing we can do stated not overly concerned nurse to which i replied that maybe if i called my NHS trust clinical commissioning group they might like to take up my case,Deadly silence followed by clicking of reciever back on hook at other end.
8 hours later slightly more concerned nurse phoned and asked if an appointment a week next tuesday would be convenient.Very much so said I,Oh and bye the way i asked thinking i was on to a winner here"how about a course of Pulmonay Rehabilitation"Sorry quoted now not so concerned again nurse we stopped doing any PR courses in January because we don,t have the staff or funds to do them.Worth a try perhaps next time i will issue the threat of maybe i will call my local MP next time but given the fluidity of the goverment they may not be in office by then.
Shame we have to go down this road,but i was climbing the walls with frustration with the lack of concern or activity being shown by my local trust.luckily i have the strength and resolve to do this but many on this site are in a far more precarious state and need an advocate to fight thier corner.Good luck to all,rant over leaving more O2 in my lungs for more posotive activitys.xx Mike
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Glad you made your point Mike and got your message across loud and clear. It shouldn't be like that though. People seem to have to fight for everything these days. It's very wrong. Xxxxxx
How very British. "I say, would you mind awfully if I sort of complained about............". 😂
my initial response was going to be your whole system is broken. Pull your finger out or i will have somebody... But being British i was just politely menacing x
Very well done and good luck with your ambulatory oxygen assessment - my other half got his a couple of months ago. It did take a little while for him to get used to the weight of the cylinder so be prepared for that, but since it has totally transformed our lives. Getting out so much more now, it is wonderful - hope it is as positive for you.
Thanks for that,i know that the cylinders are quite heavy as i used o push my dear wife Cecilia in a wheel chair with the cylinder hanging off the back so i have spent my savings on a small portable o2 concentrator that i can either wear over the shoulder or pop into a backpack.i can not wait for the NHS to finaly get its act together and i think its important for me to get more active and build up my strength and muscles,i am fed up with being an 8 stone wimp(though i was a 9 stone wimp with a beer belly)before the Copd progression.Thank you for also showing me how to spell Positive!xx
My oh has a conserver, came on the nhs and it works really well. He too has struggled with weight loss - he got a referral to a dietician from gp last year and since then has been on compac drinks which have helped him get back up to a much healthier weight so may be worth asking your gp about a referral?
Getting to see my GP is like winning the lottery,Getting a referral to a dietition who has probably been made redundant in our trust by now would be like discovering a new planet.Cecilia used to get Fortisip drinks to build her up when she was on a peg tube after her stroke but they were even horrible via the tube let alone swallowing them.i think i will have to get me some desperate Dan pie and some Popeye spinach but good luck and best wishes to both of you,mike
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feeling no cares
pulmonary hypertension
Emphysema 
A sad and interesting day.
