Discussion in 'Health News and Research unrelated to ME/CFS' started by Andy, Oct 6, 2018.
Wait a minute, support from other patients is a good thing???
medical professional and/or computer script: let's begin
a i have a hangnail. what do i do?
b is this rash a concern?
c i've had a cough for a day now [cough on pwme]
a let's get back to my hangnail
d [pwme] i am going to be unable to go to the bathroom unassisted for weeks because i came here and nobody is going to be willing to assist. do we really only have 4 minutes left? i have 3 autoimmune diseases, bronchospasm, 3 more seriously life-threatening diseases that could strike at any time and i need a preventive and they aren't fully diagnosed yet, 22 more significant symptoms, untreated [cvid, apnea, i can't even remember what else], can't plan or think clearly, want to rule out untreated lyme, i can't tolerate any antibiotics, i have hyperalgesia and opioid intolerance and need surgery, rashes never looked at because i can't get here, they ask me about my feelings about shopping bags when i go to the er, and i am normally bedridden but you aren't going to believe that because i'm here aren't i. can you tell me what i can do to not die the next time i get an attack of the most life threatening disease among my diseases?
b rash! what are you doing coming here with a hangnail?
"Can I have an appointment today for a chest infection".
"We will call you back if 14 other people call in today with the same complaint and let you know".
I wonder what the support was and how many were referred on to see a Specialist or got a needed prescription?
What came to mind (and I might be unfair) are those pain clinic groups which teach relaxation etc and "how to live with pain".
Sometimes groups can be used to intimidate people from demanding the right investigation when they get fobbed off by a GP. Guilt, embarrassment etc.
My concern is that this is rationing. Not only of a GP's time but other NHS resources which may not be warranted in all cases.
My concern is the MUPS takeover whereby they could just categorise as many people as possible together and just have a 100 person group once a day with generic nonsense instead of doling it out individually.
Perhaps they could just have Michael Jesus Mosely on a live link up and just have a national single appointment hour once a week.
it'll be lovely wont it. 15 people in a room - 4 with mild ME/CFS, 10 with CF all chatting together & 1 with moderate end of severe ME almost collapsing off their chair with the effort of holding themselves upright & the sensory overload of people talking....
"I find yoga helps me"
"you just have to be really positive"
"the LP is brilliant"
"if you keep being negative & insisting you need a wheelchair you'll never get better like we all have",
"why are you so resistant/hostile to things that can help you get better, we're all different, you should try some of these things"
GP - "look these 10 people here have started an exercise program & thinking more positively, & they are much better, why dont YOU want to get better?"
So, these are essentially doctor-led support groups, for one condition per group I assume?
I think that might be a good idea, at least for some of the less controversial diseases. In Norway, you can get a stay at a rehabilitation center, or hospitals will have patients courses at the hospital. For people new with a diagnosis, starting medication. ect. Combining having knowledgable health professionals with patients discussing and sharing among themself is really helpful for many. Why not do the same thing via the doctors office?
But maybe not so much for ME, at this point. Or maybe the doctor could learn a thing or two about ME, from the patients?
Nicely satirised; so much that could go wrong. And yes, it is rationing.
But it could be good too. Having a group of 10 people with diabetes in a group meeting with the practice nurse and the doctor every so often to share information and monitor things, with anyone with something that needs followup spotted and given that followup might mean that there is a doctor available in the clinic to see @large donner and his chest infection today rather than tomorrow.
I guess medical staff who can cause harm with one patient can cause harm more efficiently with a group of ten patients. Although I reckon if the group had even a couple of S4ME-type knowledgeable assertive patients, the balance of power might not always be with the medical staff.
If the group sessions are a voluntary addition for those who want them it might be OK. But not as a substitute for individual doctor visits.
For example for ME it could be a group session providing everyone with personal heart rate/step monitors, explaining how to use them and symptom and activity diaries to help with pacing and giving patients a chance to discuss any glitches, progress etc. And for the doctor or nurse leading the group to point out any claims individuals make about treatments they have tried are not backed by evidence and can cause harm.
That’s probably a good analogy.
Of course I taught my group to look at their records, and to tie shoes by sitting on the stairs (I wasn’t yet homebound and could still climb stairs, back then.)
The leader was impressed with the shoe trick but not so impressed with the notes thing.
But I would like to add, I find the rationale of why trying out this groups sessions very wrong. It shouldn't be about saving money - but the potentional for added benefit for the patients.
There is something similar run by my local surgery for people with Lymphedema. It seems to work well for the ladies in this group that are stable and have common problems that may need a nurse to check on like ulcers on their legs or stockings that don't fit. The nurse goes around and organises things that they need.
I attended once (had Lymphedema after cancer treatment) but it wasn't useful to me as most of the users were very elderly and not Internet savvy. They weren't expert patients. They had no idea of what the NHS could be offering to treat them but wasn't or what other areas did offer that they weren't getting.
If someone gains from a patient input then there needs to be these experienced expert patients (who probably know more than the nurse or doctor). That means the person needs to give up their time and energy and I don't see that happening very much. It's asking patients to do jobs the GP cannot or will not do.
Even on the forums and Facebook pages for various conditions there seem to be far more newbies than expert patients. My experience of cancer treatment, as an example wasn't helped much by the more experienced patients as they were either not online or had moved on in their lives. There were a lot of people online but mainly floundering newbies or the mildly affected who couldn't help me as their experience had been limited.
I'm guessing that the groups the NHS has been using are going to be the same.
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