I think the biggest issue for PWME in the UK is ACCESS to their GP - this has been an ongoing issue for me for 7 years now. I live in a rural area, cant drive anymore and the surgery is 4 miles away. It is very busy being the only local rural surgery. I cant practically sit for over an hour waiting, even if I do get there. I catch all sorts of nasty illnesses from the sick people in the room waiting.
I cant easily get an apt with the Dr who knows me and my case - this is a big problem if you have complex health issues.
There is no 'joined up thinking' each of my health problems is seen separately, rather than as a whole condition. This may because of the inability for the GP to read all your notes before you see them (which may be copious) I presume they have a thing that comes up with the salient points, but im not really sure about this. Something that is automated that comes up that gives a brief overview of how they are affected by the ME and any meds, treatments, co morbid conditions would be good.
I also think PWME should be regularly reviewed by the GP practice - this could be offered at home. This would mean the GP was aware of the nature of the illness, all the comorbidities (when you've been severely ill a long time you start gaining a fair few of these, which are often part of ME, but not treated as such by the GP).
Sorry a bit rambling, but some basic thoughts.
I cant easily get an apt with the Dr who knows me and my case - this is a big problem if you have complex health issues.
There is no 'joined up thinking' each of my health problems is seen separately, rather than as a whole condition. This may because of the inability for the GP to read all your notes before you see them (which may be copious) I presume they have a thing that comes up with the salient points, but im not really sure about this. Something that is automated that comes up that gives a brief overview of how they are affected by the ME and any meds, treatments, co morbid conditions would be good.
I also think PWME should be regularly reviewed by the GP practice - this could be offered at home. This would mean the GP was aware of the nature of the illness, all the comorbidities (when you've been severely ill a long time you start gaining a fair few of these, which are often part of ME, but not treated as such by the GP).
Sorry a bit rambling, but some basic thoughts.