I had a serious panic attack last year which made me wonder whether my time had come as it felt like a heart attack. I didn't consider going to A&E as I have previous experience how it works when I had a previous attack and from when I cared for my late husband. As things have gotten even worse I felt I'd rather pass away at home and be free of ME than put myself through the ordeal of A&E. My GP will respond to suggestions from me but is never proactive. I once copied an article from the ME Association magazine and she seemed interested, but the next time I saw her it turned out that she hadn't had time- ie she wasn't interested after all. I saw a neurologist who diagnosed CFS which isn't the same as ME. As he'd offered to amend the letter he sent if it required changes and additions I wrote to him but haven't haven't heard back from him. It's been 3 months, and I had to wait for 3 months for his previous letter.
Unfortunately, the lack of a national campaign for the past 5 years has made it impossible to warn the public about the adverse effects of long covid and possibly developing ME. Plus the decommissioning of long covid services, the service I work is under Cheshire & Merseyside, and the ICB has announced decommissioning of all 9 long Covid teams across the area from 31st March. We are ultimately concerned for our patients and their overall wellbeing and future support or lack of x
No specific deadline but we'll be reviewing all of the comments together with Patient Safety Learning in a couple weeks time - so there's plenty of time to feed in!
I had a serious panic attack last year which made me wonder whether my time had come as it felt like a heart attack. I didn't consider going to A&E as I have previous experience how it works when I had a previous attack and from when I cared for my late husband. As things have gotten even worse I felt I'd rather pass away at home and be free of ME than put myself through the ordeal of A&E. My GP will respond to suggestions from me but is never proactive. I once copied an article from the ME Association magazine and she seemed interested, but the next time I saw her it turned out that she hadn't had time- ie she wasn't interested after all. I saw a neurologist who diagnosed CFS which isn't the same as ME. As he'd offered to amend the letter he sent if it required changes and additions I wrote to him but haven't haven't heard back from him. It's been 3 months, and I had to wait for 3 months for his previous letter.
Unfortunately, the lack of a national campaign for the past 5 years has made it impossible to warn the public about the adverse effects of long covid and possibly developing ME. Plus the decommissioning of long covid services, the service I work is under Cheshire & Merseyside, and the ICB has announced decommissioning of all 9 long Covid teams across the area from 31st March. We are ultimately concerned for our patients and their overall wellbeing and future support or lack of x
Thank you for doing this! Is there a deadline for when you need comments by?
No specific deadline but we'll be reviewing all of the comments together with Patient Safety Learning in a couple weeks time - so there's plenty of time to feed in!