UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

[Trish]

So would I be right to summarise as the problem being Tyson et al?

Yes, if you include in 'et al' all of BACME and their continuing dominance in ME/CFS provision. If FUNCAP were adopted instead of the Tyson PROMs it could still be a problem if it's used to justify ongoing rehab style clinics, though it might be harder to misuse it to pretend the clinics are showing patients' health improving.

 

[Kitty]

1. This iteration of a PROM for pwME
Or
2. Any PROM for pwME
3.would it be possible to write a PROM for ME/CFS without it being harmful?
4. Would it be possible to write a PROM for ME/CFS that is useful to pwME?

I'm objecting to pretending to measure outcomes when they are not offering treatment. There is nothing to measure.

When we have a promising candidate we can start designing measures to show whether it works as expected.

Currently we do not.

 

[MrMagoo]

I'm objecting to pretending to measure outcomes when they are not offering treatment. There is nothing to measure.

When we have a promising candidate we can start designing measures to show whether it works as expected.

Currently we do not.

So you are objecting to PROMs?

 

[Kitty]

So you are objecting to PROMs?

More to the inappropriate use of them.

If a thing claims to be a measure, it must be clear what it's measuring and that it is in fact measurable.

The clinics do not offer treatment for ME/CFS, so what are they measuring?

The effect of advice and information, for instance, could only be measured if there was a mechanism to establish what people already knew and understood before they went. We have yet to see that questionnaire.


[Edited to add the word "questionnaire", which I thought I'd typed!]

 

[Michelle]

If you say you're feeling better or worse, it goes without saying that social and occupational factors will be improving or getting worse too.

But does it go without saying?

Take the Visual Analog Scale (1-10). What does it mean that my pain is a 5? Does it really say how much pain impacting my ability to work, take care of kids, take care of myself? Or does it just reflect the tyranny of the mean? I know I usually that answer with a vague "I dunno, a 4?" When you add that everyone's experience with pain is going to be different, it really becomes meaningless pretty quickly. And yet much (most?) of our chronic pain research is based on the VAS.

And we see this also with the CBT studies in ME/CFS. The minute they added a measure of function (step counts, return to work, etc.) ---of what you can do as opposed to how you feel---you quickly see this is a worthless treatment. Asking simply how patients feel is far too easy to manipulate.

Moreover, providers asking patients "how your symptoms are specifically impacting your ability to function" grounds the situation in the concrete. Feelings are abstract. Saying that I can't work because of these symptoms or I can't clean myself because of them makes it much clearer about the severity level. And it also makes assessment of treatment clearer. If I feel better but I'm not functioning any better (and I've certainly experienced that with various treatments over the years), well, what's the point of that treatment? To be sure, sometimes the alleviation of suffering may be the best one can expect from a treatment and shouldn't be denied merely because it's not leading to an improvement in function (no morphine for you, dying cancer patient!). But for chronic illness, function really does need to be an important part of the equation.

But, again, we don't need some convoluted questionnaire to do this. A simple "what's the thing these symptoms are keeping you from doing that's the most problematic" is going to be sufficient for any provider.

[Edit to add: So much of this assessment tool reeks to high heaven of a typical professional-managerial fetish with metrics for the sake of metrics. Tyson, Gladwell, et al are just playing the grift that has, alas, permeated our society. Hmm...maybe I shouldn't have edited to add this bit of commentary?]

 

[MrMagoo]

But does it go without saying?

Take the Visual Analog Scale (1-10). What does it mean that my pain is a 5? Does it really say how much pain impacting my ability to work, take care of kids, take care of myself? Or does it just reflect the tyranny of the mean? I know I usually that answer with a vague "I dunno, a 4?" When you add that everyone's experience with pain is going to be different, it really becomes meaningless pretty quickly. And yet much (most?) of our chronic pain research is based on the VAS.

And we see this also with the CBT studies in ME/CFS. The minute they added a measure of function (step counts, return to work, etc.) ---of what you can do as opposed to how you feel---you quickly see this is a worthless treatment. Asking simply how patients feel is far too easy to manipulate.

Moreover, providers asking patients "how your symptoms are specifically impacting your ability to function" grounds the situation in the concrete. Feelings are abstract. Saying that I can't work because of these symptoms or I can't clean myself because of them makes it much clearer about the severity level. And it also makes assessment of treatment clearer. If I feel better but I'm not functioning any better (and I've certainly experienced that with various treatments over the years), well, what's the point of that treatment? To be sure, sometimes the alleviation of suffering may be the best one can expect from a treatment and shouldn't be denied merely because it's not leading to an improvement in function (no morphine for you, dying cancer patient!). But for chronic illness, function really does need to be an important part of the equation.

But, again, we don't need some convoluted questionnaire to do this. A simple "what's the thing these symptoms are keeping you from doing that's the most problematic" is going to be sufficient for any provider.

[Edit to add: So much of this assessment tool reeks to high heaven of a typical professional-managerial fetish with metrics for the sake of metrics. Tyson, Gladwell, et al are just playing the grift that has, alas, permeated our society. Hmm...maybe I shouldn't have edited to add this bit of commentary?]

I think if you’re employed in the NHS you shouldn’t need to seek charity funding to work on a project for the NHS. I think you should just work on it as part of your NHS duties, or get an NHS secondment, or accept that the NHS don't want you to spend your working hours producing it.

 

[Kitty]

But, again, we don't need some convoluted questionnaire to do this. A simple "what's the thing these symptoms are keeping you from doing that's the most problematic" is going to be sufficient for any provider.

I agree with the sentiment, but I'm talking about physicians, not BPS therapists.

Their main concern is with relieving symptom burden if possible. At one point I was struggling to function because of pain, so my GP prescribed meds. He then asked at reviews if was I able to manage it better. But he could only address my pain symptoms, he couldn't do anything about my function. If I needed help preparing cooked meals, it would be a social care issue. If I needed aids or adaptations, it would be the occupational therapy service.

We're so used to talking about function—about defending our need to preserve it by limiting activity, when so many healthcare professionals think it should be increased at almost any cost—that the way medicine works in the normal world seems almost foreign.

A specialist will be focused on treating a patient's cancer, not their inability to work because of it. They treat my psoriatic arthritis, not my difficulty using sharp knives safely. It would make little difference if ME/CFS suddenly began limiting my activity a lot more, because no matter how much function I lost, my GP still couldn't treat it. He has nothing to offer that works on the disease process that is causing that reduction.

 

[Sean]

Asking simply how patients feel is far too easy to manipulate.

A core problem in subjective assessment that was known and understood decades ago, indeed millennia ago.

Yet here we are, with the very profession who is supposed to be responsible for understanding this methodological issue and making sure it is taken into account in research and clinical practice, instead now doing the complete opposite and arbitrarily weakening those standards so they can claim a result however empty, simply because they have been unable to deliver a robust explanatory and therapeutic result by those very standards which they themselves set up 50 years ago, and can't face up to it.

As if that is not enough, they then having the effing nerve to play innocent victim at being justifiably criticised for it, and blame and ruthlessly smear those pointing all this out, especially if they are patients.

 

[bobbler]

I agree with the sentiment, but I'm talking about physicians, not BPS therapists.

Their main concern is with relieving symptom burden if possible. At one point I was struggling to function because of pain, so my GP prescribed meds. He then asked at reviews if was I able to manage it better. But he could only address my pain symptoms, he couldn't do anything about my function. If I needed help preparing cooked meals, it would be a social care issue. If I needed aids or adaptations, it would be the occupational therapy service.

We're so used to talking about function—about defending our need to preserve it by limiting activity, when so many healthcare professionals think it should be increased at almost any cost—that the way medicine works in the normal world seems almost foreign.

A specialist will be focused on treating a patient's cancer, not their inability to work because of it. They treat my psoriatic arthritis, not my difficulty using sharp knives safely. It would make little difference if ME/CFS suddenly began limiting my activity a lot more, because no matter how much function I lost, my GP still couldn't treat it. He has nothing to offer that works on the disease process that is causing that reduction.

Real question

There is a bacme type of mindset - I guess that could extrapolate to ‘rehabbers’

And it basically undermines each time I try and speak to anyone in any service because they clearly decide they don’t want to understand so I’m on a hiding to nothing trying to advocate and am being buried again under that persons version of game-playing because they think I’m ’not Deserving’ for their made up reasons even tho I’ve actually been really unlucky even in me terms in timing and what I’ve had written about me due to others with agendas which they justified in their head as ‘just doing their job’

I’ve concluded that without the ‘good’ versions of these roles and/or people/attitudes (it is sometimes hard to separate but there will be different types of people in any type of job but then hopefully training and job description etc sort of interact with that), the ones with empathy who open their eyes to see the heat pads and adjustments under their nose and that someone is giving up describing the issue because they’ve forgotten their thread with exhaustion and lack of confidence because their face says they aren’t interested then the communication job for anyone becomes made impossible. Partly because the 'gap' is too big, partly because communication requires the listener to do their job, and that combining with how ill we are making us 'playable' to some.

But even if someone lucked out with such a person would the system be blocking what they can do anyway? Even if only by for example having the equivalent of those royal colleges initiatives that have scouts on certain wards 'fishing out' those who got through the net.

So there is something that is/was potentially needed with regards to actually doing one of those initially cited reasons behind all of this: assessing the services themselves, and whether what they offer is hurting/harming/helping/producing better outcomes long term with regards to debility.

Because if someone is very ill and the process is made easy to just get the support in such as adjustments or equipment that someone needs without draining the patients energy to do so then long-term it might either mean they don't become unnecessarily more severe, can keep more independence such as keeping some part time work rather than being stuck struggling until they collapse completely and can manage around the home better than if they had no support at all.

But if this is being deliberately undermined - and that is what often feels like is happenning, and is done in a systematic-seeming way that they think is subtle and all above-board by putting hoops for the illest to jump through that they can't or dragging things out until they need something more significant than they asked for in the first place etc - that process of 'playing/undermining' is actually making us iller than we ever needed to be.

So there is a 'measure' needed - but it very much needed to be defined in these straightforward, unambiguous terms that put the locus of assessment back onto the staff etc.

To start making them responsible for the parts they play in further hindering someone's life.

And it needed to be making the primary outcome long-term and not individual.

Other than 'did all those people who ended up severe or very severe having started as mild receive timely, useful, accessible and user-friendly support'? or an extra load of work on their plate because they were told to contact these other places, none of whom were being told to take the illness seriously so saw the referral as a joke to be dealt with.

The tick box each person thinking they completed being that 'well I referred' or 'well I did the conversation' so that noone is responsible, just playing their part in a system that is slowing pushing out 'politely' whilst attritioning their energy instead of just making sure the end-goal gets done.

I think of it like a filter where for a serious illness someone has an adjustment need, the condition is understood and the current and future needs don't need that much advocating for, and someone gets 'measured up' and sorted. A different path.

SO I think actually a very useful starting point, even if we aren't going to get 'real' clinics that have medical treatments is to see what for example those with MS or other conditions that might have issues somewhat near to the needs pwme might have and find out what the norm is there regarding these pathways.

And we are instead to go into the filter where all of the gates are set to keeping pushing us around in circles - it is how the system works so it is how it has been designed as long as they keep choosing not only to not tackle it but actually get rude responses when we try and bring up the issues that have been and therefore still are standing in people's ways as blocks.

 

[bobbler]

So there is a need for something - that assesses services very much if we are stuck with some of these staff - but what is needed couldn’t be further away from what this has become in every decision taken. It needs to be zeroing on the staff and how well they genuinely support those who are very ill ie their behaviour and understanding they can't hide the choices they make and the impact it has.

and because such services claim they have to show that offering said support 'helped/changed something' then I can see that maybe we have a lot being chucked into the mix here but some of them aren't totally nefarious but about trying to say 'if a piece of equipment allowed someone to do x when they wouldn't have been able to'. But I think this politics and insistence of playing along and pretending all this bps might have some worth is making the illness even more fiercly complicated and confusing for some to understand. Even I have to not just call people out on their prejudices if I don't want to be blacklisted but be polite about it, when really at this stage in the research and new Nice guideliens having been confirmed that should just be past history as having been wrong and at least conversations should be able to focus on the penny-drop of 'do to much consistently, get long-term iller and more disabled'.

And it needs to come more from the physiosforme type side in the curiosity and intelligence to want to get it from those who have had the illness a long time, even if they are poorly and can't only do it when and as they can etc. And if it is about services then it needs to be assessing them - I feel a trick has been done where those who actually many of them do need to be checked they aren’t letting their whatever getting the way of just pragmatically helping us is needed, and instead we have this which is a complete distraction

For example when sorting aids and adjustments how do we have something that is making sure that for me/cfs staff aren’t using their own prejudices and - again , for some people for the twentieth time in a row when they’ve been persuaded ‘it will be different this time’ and their health is severe perhaps because of those years of deliberate withholding of help - to unfortunately end up targeting the same patients again because they aren’t good at seeing through what they are doing because they get all faux offended at the idea of training courses on the ‘history’ which has become false notes in some people’s history so isn’t history because they use those against people

@MrMagoo we do need something written to assess the clinics staff and that is written by those who have the most experience patient wise, particularly bad experience (as they will have often been the ones without support which many might not have in future) . That assesses if they played silly so and so with someone’s health over helping with an adjustment or aid that was needed. Things that make or break how much worse people get long term , choices people make to make things hard and we decline and get buried because we have no spare energy to beg for things they won’t give so we don’t get them in time and are made to decline wasting our energy trying.

This is the bit that has to end and could have proper assessment from a charity and independent board of patients.

 

[bobbler]

As really the primary outcome, as we know it, for me/cfs needs to be:

- long-term ie 10, 20, 30yrs onwards

- only 'individualised' in the sense that someone is a matched-pair for themselves (would I be worse or better if I had got x support y years ago?). This isn't a research project but if clinics aren't responsible for someone even if it was them and their mistreatment that made them more severe than necessary then that is just gerrymandering the outcomes. And stymieing the learning. I still get offended/aghast that the NHS has not clamped down on old school BACME people calling themselves 'expert' when it was expert in something that harmed and they never met someone they did harm or those more severe.

- This PROM even Sarah admits still has the problem that it has an inbuilt ceiling/floor effect and isn't accessible to nor able to capture severe ME - which isn't just exclusionary but about making outcome data possible.

Theoretically if you have a ceiling that limits 'how bad' a measure will measure then it will be saying it doesn't matter enough to even not be hidden if someone or part of their disability goes from eg moderate to severe. Or wherever it cuts it off. And yet captures if they go from moderate to mild. So it is gerrymandering in the same currently 'inadvertent' way clinics do to say it won't even countenance believing or logging the idea of people either getting worse or harm.

Edited to add:

This combines up with it not being medium or long-term on this or in clinics in a very problematic way given what ME/CFS is - which is the getting worse at 6months from GET, not whether 3months in someone can do one specified activity better at the expense of everything else and their future health outcome. Where is the bit on the PROM that means the person who people-pleased and seemed a perfect improver (even if coerced responses as they needed to keep their job and results were perceived to be passed onto their employer) for the 4months in clinic is actually then being followed up at 2,4, 6, 8, 10yrs with a simple accessible-to-most-severe (and that just has a box saying 'very severe' instead of these questionnaires) logging of what severity they ended up at?

But this is medicine. The first thing any measure should do is the opposite and it needs to be instead making sure that it can capture where something worsens in order to ensure that 'management' at least does what the definition of 'management' is: preventing things that make something unnecessarily worse as an outcome. And this cannot capture this.

I'm not sure Sarah sees or is willing to see this is not just an issue of 'excluding the severe so we'll give them a different survey', but that we have a bunch of staff who have historically and still hold onto beliefs in approaches that harm - the main reason we need a measure: safety - and the main direction of travel for pwme after they've had it for enough years is to get worse. And we have a measure that can't acknowledge this. So it also can't safely 'treat' or monitor anyone who is mild. Or to allow informed consent on risk information (as it doesn't/can't capture people getting worse)

We are in the same position as years ago when Gerada, was in a video to GPs telling them to tell patients that pushing through when they felt awful "will not harm them" when she did not have the facts or attempt to check that in order to make that statement - it had not been tested. It is the first question of any treatment or management for any medic that they must provide accurate risk-benefit information and that statement gerrymandered that informed consent. It is the first question any patient would ask before trying something.

Which to me is fundamental and bps claiming themselves that they had a false belief in seeing these patients as 'having false beliefs' in order to employ powers to which they were not entitled over those patients was the 'loophole' they invented. That no longer exists other than the weak attempts by some to say 'they [as medics] can have their beliefs', but when that fundamentally is a belief in having the right to undermine someone's human rights [to accurate prognosis and risk-benefit info] errantly then where does the burden of evidence have to lie? This isn't a 'placebo illness' but the opposite. Conning patients with incorrect harm and prognosis data can no longer be claimed as 'therapeutic' or with good intentions or indeed due to them having a kind or good view of said patient.

An intention to not allow getting worse or being severe to be recorded or captured as an outcome due to limiting the scales and the accessibility to a population is a real major issue to do with definition of the condition etc. and indeed basic information on harms and advice for management? and all the other things that probably might cascade from the use of such 'data'.

It is like having a cardiac work claiming that it can't report on death rate anymore because it would require those who died in their care to fill in a questionnaire. So then claiming they are still cardiac experts. And refusing to take on board lessons from deaths 'unless it is through the questionnaire'. Then telling those signing up for the same procedure that rate as if it is correct info on risk-benefit.

 

[Jonathan Edwards]

because such services claim they have to show that offering said support 'helped/changed something

This is the absurdity. For physicians treating rheumatoid there was never any need to show we had changed something. We followed what the evidence said was statistically likely to help but knew that testing whether or not the treatment did help required controlled trials. Even in controllled trials we do not attempt to assess whether an individual patient responded because we can never know. The central problem is that the rehab community have never understood this. And that is despite some of them being physician professors who in the past very clearly understood. But once they get into rehab they conveniently forget everything that does not suit the business.

 

[bobbler]

Although of course there would be medium-term outcomes where for example someone who had benefitted from good 'proper OT' (ie not psych OT) support might be able to survive in a way those who instead got the run-around for 3yrs with no intention of real support from someone deluded to think if they just get distracted they will forget they are ill and magically be better.

It hasn't come together fully but I'm getting a few key points coming through:

1. Someone with MS wouldn't find that their illness actually improved just because they had the equipment to allow them to cope or better adjustments at work. I'd be intrigued to know how much/badly they and other serious illnesses get tricked and played by the mindset of mobilising/losing the ability to do it yourself.

So why are we having these measures? What is the norm - is it different for example to just trust the patient self-assessment when for example MS means you have examples of lesions, so then what health-wise is reported is trusted even if there isn't a direct objective correlation there?


2. one thing I am sure of is that Tyson citing someone whose focus is on aging/old age and quality of life is pretty inappropriate given that the very issue/attitude/prejudice we battle with comes directly from the mis-extrapolation of 'pyjama paralysis' - very old people who went into hospital for something acute and got stuck there for months, something which should just never have happened and didn't need a fake policy to cover-up the real issue of not getting them home whilst they rotted by pretending it was all fixed by making them sit in a chair all day and do the odd walk up the ward instead.

So why have we something that has now been confirmed to come from 'old age studies', which focuses on 'keeping moving' and 'deconditioning' as the basis when ME/CFS is the exact opposite : 'no treatment based on the paradigm of deconditioning and/or false beliefs'?

Has the penny dropped for her on this when she cites someone focused on quality of life in old age regarding her methods?


3. WHat this is, according to what I can see from Ann Bowling herself's terms for these different measures is 'an individualised measure'. ie one that isn't acknowledging that there should be the situation where all those underneath this are somewhat brought together by having the same underlying condition. Excerpt from 'Measuring Disease' a different Ann Bowling publication: https://journals.sagepub.com/doi/abs/10.1177/135910539600100408?download=true

Which also begs the question why out of those 2 large book Sarah chose the 'measuring health' one over the 'measuring disease' one?

- I think if we were to get a straightforward, direct answer to this question then it would be insightful as we are still trying to work out precisely which tick-boxes this PROM is actually trying to complete. It's tragic we are trying to figure this out, because it shows how bad ethics has got in our area as this is basic informed consent stuff to know what a charity is funding and sponsoring to be 'measured in us'.

And it is some very over-holistic attempt at quality of life, missing the point on 'cumulative exertion' - but because of it then getting dragged through a lens of these rehab/BACME types becoming ripe for manipulation


4. I think we have a rather complicated situation as long as clinics are short-term and only 'dealing with' new patients.

Particularly if the diagnosis is speeding up and so those who are in the group that has good rest early on in the first eg 3yrs might recover. And then the stats are very different if that doesn't help and you still are very ill 3yrs + in.

I am getting the message that for all of the trying to having something for ME/CFS

Those who have been allowed responsibility and say have dropped the ball and are carrying on with another 'anything but' service. Treating anyone as long as they have 'something that isn't long-term ME/CFS' at the literal expense and harm of acknowledging the actual condition for which they are funded or in the name of.


Edited to add: and so we have another GOGO (garbage-in-garbage-out) situation which would be outrageous given Nice analysis of the area highlighted the issue of not properly including PEM

So the lack of being prepared to have intense scrutiny of at least 'PASS' that Sarah claims 'ticks that box' (but I don't think is enough as PEM and deterioration due to cumulative is the new paradigm not a 'symptom'), which is absolutely the correct thing with regard to any dataset that is going to be used in 'fatigue' and 'PPS' clinics is simply inappropriate and not good enough.

And those oversighting it should have underlined this as a fundamental expectation that would lead to it being binned if PEM was undermined and deliberately misconstrued. It would then be not an ME/CFS PROM wouldn't it? but some other made-up variation of an illness for which there isn't a guideline...

a prom doesn't become a prom for a specific condition just because you want to put that label on it or claim that's what you are 'expert' in

We do not yet know what this even is a supposed 'PROM' for condition-wise, there are still big questions for me as to what it is actually related to as a condition. And I'm also unsure it is a 'PROM' given the shifty-seeming answers we have had as to what this has been designed for covers more than just the norm even of normal PROMs that a knee-op clinic might use and have designed only for that purpose.

There is a rule in marketing and in anything else that you do not ask for data that is not actually required explicitly for the purpose you are asking also. SO the misnomer of killing birds with one stone seems a problem here.

 

[Kitty]

But even if someone lucked out with such a person would the system be blocking what they can do anyway?

I can only speak from my own experience, but I haven't found that to be the case.

Over 20-odd years I've had three lots of home adaptations, the last one a a Disabled Facilities grant for a wet room, stair lift and new wheelchair ramp. Far from having to fight for it, the OTs advised me to apply for more than I'd asked for (which was only the wheelchair ramp).

Their thinking was that government-funded schemes like the DFG can be pulled at any time, so if there are genuine needs and injury risks, let's address them now—all of them. The access needs of older people with chronic illnesses usually increase as they age, but it's very difficult to get a second grant.

I suspect social care might be different, but as much as anything that's because the workforce isn't available to provide all the required hours. So far I've only needed help with cleaning and gardening, which I sorted out myself.

 

[Kitty]

1. Someone with MS wouldn't find that their illness actually improved just because they had the equipment to allow them to cope or better adjustments at work.

Exactly so.

I'd be intrigued to know how much/badly they and other serious illnesses get tricked and played by the mindset of mobilising/losing the ability to do it yourself.

I've known three people with severe MS, and I don't think they do. The people who look after them know they won't take to powerchairs for fun, because they're an expensive, ugly, uncomfortable pain in the arse that cause nearly as many problems as they solve.

They also know that most people want to keep their independence. They struggle on far too long before they ask for help, and try to stay in work until it's no longer possible or they're sacked for poor performance. There are always a few that will try to play any system, but it's not typical.

As far as I can see, people with severe MS are like people with ME/CFS. They're resilient, determined, and remarkably self sufficient given their level of impairment.

 

[rvallee]

I assure you it is completely tailored for people with ME.

Responding this to people who keep literally pointing out it's not the case is just everything, isn't it? The same as with all the clinics that don't make any difference to outcomes. They just say it anyway. They don't have to listen to us, they just have to pretend.

MEA doing the same is the end of their relevance. They had so many opportunities to do better, they clearly don't want to.

 

[MrMagoo]

Is this “PROM” measuring “treatment” per se? A patient-reported outcome presumably can be applied in diseases which result in death or further debility. I’m sure some are just measuring “management” not treatment.

The situation today is there are clinics staffed by the people they are staffed by, not all following NICE guidance, in the NHS, not offering services for severe/very severe ME/CFS.

And there is no “help” apart from (if you’re lucky some other tests or differential diagnosis chat) advice on management (pacing).

This is the situation a PROM would be introduced in, we can’t change that overnight.
I’m still trying to parse whether a PROM in the current NHS is a terrible thing for pwME or not, or whether this iteration by Tyson is the terrible thing.

 

[Kitty]

I’m still trying to parse whether a PROM in the current NHS is a terrible thing for pwME or not

What is it measuring?
What is the purpose of measuring that?
Does it measure it?

Who is the data for?
How does it help with treatment?
Is it the best way to get that data?

What is the benefit to the patient?


Might be worth saying that the rheumatology and breast cancer departments of the teaching hospital here, and the neurology department of the general hospital in another city that a close friend attends, have never felt the need to use PROMs or any other questionnaires. They focus on treatment, monitoring, and referrals.

 

[bobbler]

What is it measuring?
What is the purpose of measuring that?
Does it measure it?

Who is the data for?
How does it help with treatment?
Is it the best way to get that data?

What is the benefit to the patient?


Might be worth saying that the rheumatology and breast cancer departments of the teaching hospital here, and the neurology department of the general hospital in another city that a close friend attends, have never felt the need to use PROMs or any other questionnaires. They focus on treatment, monitoring, and referrals.

I agree on the delivery not being left to continue marking their own homework.

The worrying thing is that by MEA having gone rogue that association/badge might might it awkward for other charities from stepping in to do the independent monitoring instead/on top ‘because of the politics’

What this has turned into is truly terrifying when you realise instead of monitoring the staff it’s been twisted to put patients under a dystopia where they have to report on their own bodies and be punished if those don’t operate the right way potentially.

It takes away the last refuge those who could scratch survival out despite the regime could stay safe -by hiding to lessen the direct abuse as they did.

And if the data is going back to the same staff who have huge power over someone and aren't independent then the information/data therefore can't be 'clean' because it surely must be impacted by that risk and influence patients are having to weather.

In fact by being unclear or saying that the data might be used for a multitude of things it makes it impossible for a patient to fill it in either accurately or safely. If clinics 'liaise' with your GP and/or employer and other vital people who determine huge things in someone's life and it might go to the DWP or DHSC but is somehow 'the feedback' as to whether a treatment works it just feels like it is breaching all sorts of basic protocols. Yet expects to use the data taken under conditions that must whittle who fills it in significantly, as well as what they can say and extrapolate what they infer from it over those who don't fill it in, despite it lacking any external validity.

I think PROM in first instance have been cited as being used for something eg a knee op which , like the old nonsense of when the iapt non-CBT came in (only selling point being a sausage machine in sense of it being six sessions when they were selling it to rationers) , they wanted to suggest was a package of care with some end-point.

None of those things started asking intimate questions that are off-piste from something related to their knee. In order to build a file on them and who they are. By a group of staff who have demonstrated they could weaponise such access they shouldn’t have in the past, so yes history is highly not just relevant but needing to be assumed will repeat worse if access/opportunity is increased.

I don’t think that any PROM can be used until there has been an overhaul in communication techniques and dis-embedding CBT and motivational manipulative stuff from staff. Particularly when it will be used against patients if they don’t tick the right boxes. Otherwise it’s just coercing responses.

When the problem is the staff and many of them wanting to relegislate the same old ‘debate’ at the expense of those they already harmed, silenced and harangued to get away with it the first time. It’s been so harmful to outcomes and lives that might have been significantly different for which those staff do need to look at it in the eye and stop with their attitude and the like to those who just bring up their own medical history and facts of what actions caused the consequence for them,

It does seem they want to continue hiding in a system that distributes responsibility so that as people’s lives are destroyed the person who played the first part doesn’t see the result and the next person then rinse-repeats claiming they don’t believe the first action really was the cause (then never sees the patient get worse from their ‘go’) and pretending it’s all just rules, systems and budgets and assessments that aren’t written down

In a way staff in other departments don’t.

I believe in most other medical situations most good staff would try something different if someone came back harmed or worse from trying x. Except for rehab type things.


I don’t know how this Prom thing has extrapolated into what it has - or the extent of open-ended claims of what it will be used for. It seems very weird how changeable and unforthcoming this ‘end goal/use’ has been

As there has been mention of datasets at some point and logging prognosis - they should have decades of reliable stats on people getting more severe or how long they had it so it’s always shocking when you realise how that basic stuff got prevented from being logged and gerrymandered.

 

[MrMagoo]

What is it measuring?
What is the purpose of measuring that?
Does it measure it?

Who is the data for?
How does it help with treatment?
Is it the best way to get that data?

What is the benefit to the patient?


Might be worth saying that the rheumatology and breast cancer departments of the teaching hospital here, and the neurology department of the general hospital in another city that a close friend attends, have never felt the need to use PROMs or any other questionnaires. They focus on treatment, monitoring, and referrals.

But the fact is the NHS is using PROMS and PROMS have been created for ME/CFS. My point is still “are all ME/CFS PROMS in the NHS going to be bad, or just Tyson’s one” rather than pondering whether the current design of the NHS, clinics, clinicians etc is wrong. I think we’d all agree the current state of those is terrible.

All NHS clinics will have outcomes measured in some way or other, including the ones you mention, there is benchmarking, service evaluation frameworks etc