Agreed. It feels like there is a story behind that one given it would seem obvious some severe ME have ended up in certain situations. It 'seems' like the artificial divide to the extent of separate services has little justification and would hinder understanding of the fuller picture of the condition/produce more complications etc. Funding wise there is also the risk of cherry-picking. I could go on forever but guess this might distract the thread too much
On a side-note for this one (but with general applicability) I find the lack of clarity in what a patient will be faced with outrageous. Why is the constructive ambiguity permitted, when they need information in order to protect their own safety. That is obviously an ethical issue too.
It's another one of those 'common sense/knowledge' that not providing clarity whether the person or treatment is something safe or not safe given the ongoing history is not OK, and shouldn't be coming second to internal political needs. But maybe there is a different tack to underline this and the harm associated with it and how it isn't a sustainable position for patients (and does little to reduce stigma/lack of clarity of what the condition for those who might be around someone with ME etc)? When and how do patients get to see and feel reassured whether anything has/will substantially change whilst descriptions can be so fluid?
It has suddenly struck me that one upshot of not providing clarity regarding the service is that people 'sign-up/go along' to find out it is something that would not be useful.
1. Does this mean that the service 'gets paid' even if people only go for one appointment? EDIT* and by this I mean maybe for the whole fee for a series of appointments (like a uni has a cut-off date in first term after which they get the whole fee even if someone drops out)
2. Does this mean that the service then controls how a drop-out/non-completion is reported? ANd would there by any chance be a nudge that means they get paid if the issue was the patient (service can't control for failure patients) vs service not being a match (where they would need to look at payment/future contracts)
So instead of having whoever the referrer is writing and noticing that most patients decline the offer due to the service not being safe, the service itself then gets to suggest the reason (which as we know often gets turned into 'patient failure' instead of 'service failure').
As someone from a background working in universities I find it wholly shocking that the drop-out/non-completion rate is not the entire focus of any auditor or oversight. And even more shocking that we have the sham where even in official 'research' based on clinics non-independent academics are allowed to infer the reasons behind it rather than it being thoroughly independent follow-up.
Particularly, but not exclusively, when these are outsourced services why on earth has noone cared enough or had enough respect of patients even to make sure that independent horses-mouth surveys/reporting is happenning before contract renewal.
And it says a whole lot about the attitude of the industry (and them perhaps being well aware that fixing it would not be in their own interests for many reasons) that they are not obsessively driven by watching and fixing these moments of truth themselves. And shocking that noone seems to really care what state patients are in after they've been through 'their system' yet parrot the 'recovery myth'.
I do think we've all perhaps go inadvertently dumped into the middle of a 'wellness industry-focused innovation' where positive (wishful and seeking out info that backs what you want to think) bias in order to keep doing what you want to do
and keep being able to claim that is worthwhile has dominated methodology. To the point I suspect it has skewed things to the point those served and sought by the services are probably least likely to have the condition, or the most harmed (because they are physically harmed but the embedded psychological programming and nudges mean they people-pleased ended up saying they were grateful for it and said positive things before collapsing to be polite to the staff).
You end up with a self-fulfilling bums-on-seats prophecy, where the question is: goodness knows who the people these services have listened to and worked with most actually are.
Even
if this sort of thing were justified as an 'add-on' under the guise of 'we don't have any medical treatments yet so we are offering any therapies that might help' then it should only be being paid for
after they've set up proper clinics with actual physicians and suitable HCPs who provide adjustments, monitoring and are researching what does and doesn't work (to further the knowledge of the condition). But also when you look at things like MS such places would exist under a very different set-up e.g. a local charity that might be funded by NHS (as these are) but is driven in its decisions by those with the condition - one near me has things like oxygen therapy, therapeutic massage, foot care etc.
This is not
in the interests of or 'for' as they like to claim this particular demographic of patients when you compare the two - simply by voice and governance and input.
