I expect via NHSE putting together a very basic set of questions on a spreadsheet with a Red Amber Green rating and sending it to Integrated Care Boards or hospitals (depending on who is contracting the service in hospitals) for completion. It would likely be very simple questions without digging into things, and based on what the NICE guidelines say.
e.g. do you use PROMS/PREMS, are you monitoring data for trends, do you accept referrals from primary care and secondary care, are you accepting referrals from X weeks per NICE guidelines, are you attempting to reach people from undeserved populations, is there direct access to diagnostics and specialist advice, do you do multidisciplinary assessments (as in bps).
They would probably ask you to explain e.g. how you're attempting to reach undeserved populations, but wouldn't interrogate the answer at all and the answer could be YES but woolly.
Agreed.
the part that was powerful if I'm remembering the correct one from the MEAction survey was the open comments. Which could be filtered by clinic. I don't think it is that unmanageable for most (healthy and even a very much more motivated pwme who is in a better position) to read through these, and they are more accessible to scan as they are written in people's own language, than sometime reading summarised info from coding or interpretations from statistics.
I also think that if we are sending it to people who make funding decisions then we need to remember, as the bps very much do, that the questions will prompt an idea/reminder of what they should be using as a tick list when developing said service. I also think that we should be well within our rights to have our own measurement scale of what people are offering, as you say vs the 2021 Nice Guideline list - and this seems fair (then combine it with open comments to see if it's BS in content of these titles and they 'get it')
I agree that it might be useful to put some straightforward questions asking if they do the following as benchmarks down of what clinics should be offering if it is being sent to the ICB (could be yes no, or some sort of scale to tick):
services that are accessible (and useful/worth the energy and specific to needs) to those who are severe/very severe, moderate, mild
ME/CFS (are they being rigorous in that); a diagnostic process that properly understands PEM and not some BACME version of it; having a medical member of staff who isn't either psych or physio, proper diagnostics for any other conditions (I feel we should be past the days of assuming these need to be exclusions, as comorbidities are possible and woohoo if it turns out something is fixed by iron tablets or whatnot) and action to initiate treatment, or request investigation of other conditions that might likely not be helping given it all draws on same energy (given the old guideline acted as a barrier, and the MUS stuff also did, to people getting investigated for anything as it labelled them hypochondriacs);
benefits/work support with forms; support with adjustments and social care applications, annual monitoring of physical condition and function ie their 'health' in a medical sense
only for the purpose of the individual's needs and objectively reporting into statistics on prevalence and progression (so include drop-outs and reasons eg if the appointments become inaccessible due to severity); letters from a biomedical staff member to GP etc to educate them on the condition and what it means to
reduce misinformation; basic straightforward leaflets about energy limitations and conservation, impact of orthostatic and stimulus issues (not sure on the intolerance word), PEM and the potential for deterioration if thresholds continually pushed (not much more needed there is there?);
as well as long-term commitment to patients with annual checks that are medical and objective ie as you'd get for another biomedical condition (is this eg 10yr outcome reporting?); a sensible pathway that allows for 'emergency appointments' or more 'intense support' when someone is at a moment of truth or potentially changing severity to allow intervention
before that becomes permanent through eg looking at swift additional support/extra adjustments to care and checks there isn't another condition at play etc; liaison into the hospital to ensure safety of incoming patients/reduction in inappropriate psychologising, 'dunnos', FII etc (if in remit)
and...removal of all old (and new) website information suggesting anything regarding increases in activity or CBT unless someone has a comorbid requirement and removal of embedded old CBT or ideas that have been invented without evidence like 'dysfunction' or other pseudo ideas. ...In the name of mental health and avoiding causing situational problems by inadvertent misinformation that could disrupt relationships etc.
and ask them to state the referral criteria and copies of any letters/website info relating to that which they are sending out to eg GPs, in order that we can see whether it is an ME/CFS clinic, or one taking funding but operating the 'its OK we still offer harmful treatments because we only treat CFS/ME' so that we can see if they are making all efforts to exclude or include PEM .... ie delivering GET/CBT without asking the question at any point, so to people who have ME/CFS. That one could be better worded.
I'd also be intrigued to ask how many/what % of patients end up being given a pyschiatric diagnosis by the clinic.
And what % are confirmed to have PEM , and what % of those who they treat with their clinic are those who have said confirmed PEM-confirmed ME/CFS
That sounds about enough to start sending out gold, silver and bronze certificates if anyone ticks enough
and their materials don't have anything misleading in them etc
PS one day I'd add in logging of additional diagnoses (on assumption of that lifetime monitoring) against a database of those with or who have had the condition in order to allow us to keep on top of common differential diagnoses, comorbidities, misdiagnoses, conditions that seem to develop x years in etc.
In a way it is fine if they want to offer massages or acupuncture like they do for cancer patients who also have proper treatment programmes for their illness itself. Notice that there are no points for psych courses. But they need to not pretend it is treatment, because it isn't psychogenic or psychosomatic, and shouldn't be diverting funding from hiring a proper nurse/biomedical consultant who can offer actual medical care and input into furthering knowledge, properly. Then claiming they can't possibly do the basics. Or the illest.
I'd hope that if the issue is understanding ME/CFS for nurses then people like Caroline Kingdon might be OK to help with what the best way forward in that would be. If it were a CPD type course then that sort of thing could then be added to a biannual survey (given the cycle of jobs we see that sounds a fair amount of time for them to be thinking about whether or not to just rehire to that old post or do something different etc).
