UK: Physios for ME

[Binkie4]

I understand your reservations about ' Unrest' @Jonathan Edwards but don't some of the Medical Royal Colleges use actors, briefed with symptoms and a scenario, to act as patients in specific situations, to role play certain illnesses, and student doctors are observed and marked on their interpersonal skills and clinical knowledge? Thus doctors would be familiar with this way of learning from their early
medical training and ME/ CFS would just be fitting into an established pattern which might help dispel attitudes about it being a non real disease.

 

[Jonathan Edwards]

don't some of the Medical Royal Colleges use actors, briefed with symptoms and a scenario, to act as patients in specific situations, to role play certain illnesses, and student doctors are observed and marked on their interpersonal skills and clinical knowledge?

They do, but my experience of it in rheumatology was that it encouraged bogus tropes about arthritis that I spent my teaching life trying to undo. It is basically a dumbing down process. A process based on beliefs rather than evidence. It is antithetical to the scientific idea of actually observing the real thing.

My father taught me that you learn your medicine from patients, not from textbooks. To teach using actors reading what is in the textbooks makes a mockery of that. Nobody will ever learn anything new because nobody will ever see anything differently.

fitting into an established pattern

Exactly, the last thing we want.

might help dispel attitudes about it being a non real disease.

I see that as highly unlikely. If the Colleges have the attitude of it not being a real disease they will commision actors to pretend to pretend they are ill. If physios get people to pretend, what exactly they will be pretending is a bit hard to be sure.

I came to realise that ME/CFS was real from listening to a parent, who I knew well, describe their teenage son's illness. I had seen people in clinic describe the same thing but I tended to pigeonhole it into immune disease I was familiar with. I was convinced by real stories. How is anyone going to be convinced by pretend stories that this is not pretending? The more I think about it the more it seems to be back to front.

Human beings recognise things through mechanisms they do not actually know about. Assuming we know how people recognise things and trying to simulate it is to me bad practice. Hubris.

 

[Binkie4]

Thanks Jonathan. I can understand you learning about ME from someone you knew well having a son with the illness talking about it. There is nothing like personal contact and knowledge for conveying understanding of this illness ( note: Sajid David) but it just isn't fast enough to get to all doctors.

Is the involvement of actors so long as well briefed with realistic scenarios prepared with patient involvement not better than ME/ CFS being ignored? It would be crucial that all those preparing the scenarios and symptoms be themselves totally committed to the reality of the illness and examiners be watchful for belief in the illness as not real, which would be marked down, actually should be an automatic ' fail' I suppose some of the Colleges will be more reluctant than others. Some have done a lot of work however in involving charities, patients, lay people, Consumers ( terrible name), whatever you call them.

 

[Utsikt]

Is the involvement of actors so long as well briefed with realistic scenarios prepared with patient involvement not better than ME/ CFS being ignored?

But what is a realistic scenario of ME/CFS? The consequences of doing it wrong might not even be apparent until a day or two after. They won’t learn anything for a simulation, other than to do things in a low-stimuli manner. But that’s easy. They do it for all kinds of other diseases. They don’t need training for that.

 

[MrMagoo]

Both google and publications talk exclusively about putting the HCPs into scenarios where they will act out what they would do if they were the HCPs in the real situation.

So I’m guessing it’s not putting on partial blindness glasses, but rather how to deal with a patient with partial blindness.

I don’t think that’s going to be useful. It’s not difficult to adapt to the needs of pwME/CFS once you’re aware of them.

And yet…they don’t.

As someone who ran the dreaded workplace training, there is value in people “practicing” how they react in certain situations (even if role-play is cringe) as otherwise people have a real tendency to default to their own opinion/experience and in our case that doesn’t help. Sadly the default in many, many situations to act like a boomer parent and treat the person as a naughty child who needs to be told off.

I thought Jen Brea turned out to have that neck problem anyway and now she’s better after the op?
I thought she was just very American, I’m much more the type to hide (in fact I once crashed out under a table in a disused office at work. In stereotypical British behaviour, someone crept in to make a mobile call when they were supposed to be working, paid me no mind apart from “ok? ….er do you mind if I just….? and we both pretended the other wasn’t there and never spoke of it again).

 

[Kitty]

I worked all my career in theatre and I can think of at least a couple dozen actors who regularly did/still do these jobs in between tours. They were about communication skills, often for younger doctors, and the role play was frequently with a member of a community they may not have interacted with before.

The most recent one I helped someone prepare (she asked me to play the trainee GP) was about communicating with a recently settled refugee woman, who had insecure work and housing and young children to feed. She was ill with norovirus-like symptoms, and was pleading for treatment because if she didn't go to her agency cleaning job, she would almost certainly lose it and that would put her housing at risk.

The actors who played the patients were always from those groups themselves, whether it was a particular religious, ethnic or language background, or they were disabled or Deaf, or had experienced homelessness or interacted with the criminal justice system. A sighted actor wouldn't be asked to play a blind patient, and I can't imagine anyone agreeing to it even if they were asked. Cripping up is about as acceptable as blacking up.

In decades of taking calls about it, I never came across anyone being asked to play-act serious illness. It was always about dealing with the social and contextual stuff around ill health, because that's the hard bit. Medicine would be a lot easier for doctors if their patients weren't living real and often complicated or marginal lives.

 

[Binkie4]

I have observed, as a patient, doctors practicing their skills with actors routinely playing the part of patients as a part of their assessment and it seemed to work acceptably. The fact, and this was 20 years ago, that patients were becoming normally involved in this process and then fed into the process themselves, is a positive move.

I agree that there is nothing as powerful and convincing as having a close family member with the illness but we cannot wait for this to just happen. Processes need to be devised that test understanding of the illness during training that trainee doctors know they must assimilate and put into practice.

 

[MrMagoo]

I worked all my career in theatre and I can think of at least a couple dozen actors who regularly did/still do these jobs in between tours. They were about communication skills, often for younger doctors, and the role play was frequently with a member of a community they may not have interacted with before.

The most recent one I helped someone prepare (she asked me to play the trainee GP) was about communicating with a recently settled refugee woman, who had insecure work and housing and young children to feed. She was ill with norovirus-like symptoms, and was pleading for treatment because if she didn't go to her agency cleaning job, she would almost certainly lose it and that would put her housing at risk.

The actors who played the patients were always from those groups themselves, whether it was a particular religious, ethnic or language background, or they were disabled or Deaf, or had experienced homelessness or interacted with the criminal justice system. A sighted actor wouldn't be asked to play a blind patient, and I can't imagine anyone agreeing to it even if they were asked. Cripping up is about as acceptable as blacking up.

In decades of taking calls about it, I never came across anyone being asked to play-act serious illness. It was always about dealing with the social and contextual stuff around ill health, because that's the hard bit. Medicine would be a lot easier for doctors if their patients weren't living real and often complicated or marginal lives.

I guess a “simulation” might use genuine info from a case of a severe person standing or sitting and answering questions, showing that they have Orthostatic intolerance and their HR and BP are going crazy so maybe don’t stride in shouting “good morning patient” and firing off a load of demands and questions which you don’t actually need to ask them because you’re making them exert for no real good reason than your own convenience.

If saying that to HCP’s worked, then we wouldn’t be where we are right now.

 

[Jonathan Edwards]

I can understand you learning about ME from someone you knew well having a son with the illness talking about it. There is nothing like personal contact and knowledge for conveying understanding of this illness ( note: Sajid David) but it just isn't fast enough to get to all doctors.

There are about as many people with severe ME/CS as there are with severe RA. Every student gets to see people with severe RA. The solution surely is to have clinics for people with ME/CFS and domiciliary visits where students can learn from reality.

As soon as you have acting you will have fairy stories. I can guarantee that if people start teaching actors how to 'have ME/CFS' they will start telling them to describe their EDS, MCAS, POTS and whatnot. I happen to know that professionals are expected to believe in these things when being assessed at the highest level for employment. We are surrounded by this make believe. I was surrounded by make believe about RA when I started out. I had to unpick all the bogus stuff.

What exactly is this actor supposed to be faking anyway? Are they supposed to say, realistically: no, sorry I can't cope with seeing any students - end of session. Are they supposed to give an account of all their pains - which they will do in an acting voice that will impress on the learners' subconscious just how fake ME/CFS is? I don't get it.

examiners be watchful for belief in the illness as not real, which would be marked down, actually should be an automatic ' fail'

But how do you do that if the candidates are acting as well, to pass the test and the examiners don't believe in ME/CFS anyway? It doesn't add up, does it?

 

[Jonathan Edwards]

I have observed, as a patient, doctors practicing their skills with actors routinely playing the part of patients as a part of their assessment and it seemed to work acceptably.

I am not sure what you are referring to here. If it is practicing examining the abdomen or using a stethoscope or going through the history questions then it might work but I don't see how this would apply to learning about ME/CFS.

Processes need to be devised that test understanding of the illness during training that trainee doctors know they must assimilate and put into practice.

But we don't understand the illness, do we?
The way to understand what a person's illness is like to them is to take a history. There are hundreds of thousands of people to take a history of ME/CF from - with real ME/CFS. You don't even have to pay them to come and be asked - it is called a clinic. You don't have to teach people what it is like to have ME/CFS if they have got it. And as soon as you start teaching people with ME/CFS what to say the fairy stories start, just as they did for RA.

 

[Binkie4]

But how do you do that if the candidates are acting as well, to pass the test and the examiners don't believe in ME/CFS anyway? It doesn't add up, does it?

We certainly have an issue if those teaching and assessing trainee doctors don't have a genuine belief in ME/CFS as a sometimes severe and in the worst cases life threatening illness. We do have a long way to go.

 

[Trish]

It's a problem if, as currently in the UK, the only pwME getting to clinics are mild to moderate and newly diagnosed. After that, we're on our own. So unless students visit pwME at home, they are likely to see only ambulant people well enough to get to a clinic and sit through a couple of hours of group therapy, talk coherently, cope with lights, noise, participate in conversations between multiple people, fill in questionnaires and walk out and travel home afterwards.

 

[Kitty]

I guess a “simulation” might use genuine info from a case of a severe person standing or sitting and answering questions, showing that they have Orthostatic intolerance and their HR and BP are going crazy so maybe don’t stride in shouting “good morning patient” and firing off a load of demands and questions which you don’t actually need to ask them because you’re making them exert for no real good reason than your own convenience.

But it's unlikely to involve actors. Theatre's a truth game participants commit to playing with performers, where the usual rules are suspended to explore a "What if?". That commitment is where the emotional power comes from, and why ethics is such an important part of making theatre. Truth games aren't entirely separate from reality, so they aren't entirely games.

Simulations though are cold setups. When they're working on a volunteer with fake blood in their hair, or Ryan from Year 1 who's never had anything worse than a sprained ankle, HCPs know that there's only so much they can learn.

I'd be worried if someone was trying to use actors with no direct experience of ME/CFS to role-play it, because it's about as unethical as it gets. Mechanistic simulations—not so much.

 

[MrMagoo]

I don’t think it’s a bad thing

 

[Felis Catus]

Maybe caregivers of severe and very severe patients could act it to some extent. Everyone else is more and more degrees removed from the patient which adds more and more layers of interpretation.

I actually don't see the need for acting. We receive no care. HCPs could learn by visiting us.

 

[Jonathan Edwards]

I would get the trainees to read what Maeve wrote just before she died.

I don't see the value in simulation if we do not have any evidence base for doing anything in particular other than what any normal person would do if they understand how the person with ME/CFS feels and how activities have affected them in the past, and believe them.

 

[Chandelier]

ME Awareness Day: new article

This ME Awareness Day we are pleased to have a new article published in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!)The article is called: "Do no harm: supporting people with ME/CFS.How can...

www.physiosforme.com

New blog post:

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ME Awareness Day: new article​

This ME Awareness Day we are pleased to have a new article published in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!)

The article is called:

Do no harm: supporting people with ME/CFS.
How can physiotherapists provide effective therapies while ensuring patients with this debilitating condition feel safe and supported?

In this article we discuss the recent Department for Health and Social Care delivery plan for people with ME, in particular that people need to "feel safe and supported by services and professionals in line with other long-term health conditions.’

We highlight that "feeling safe" is an unusual phrase to use, then give an overview of the issues facing people with ME and traditional physiotherapy management. We discuss ways a physio could adapt their approach when supporting with a person with ME, and signpost the training modules now available from the delivery plan, as well as our own resources.

Publishing an article like this has been one of our goals since we first formed as a group, so we are delighted to have an article published in a publication with such reach, and that the CSP have taken this matter with the seriousness it deserves.

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[Trish]

Thank you, @PhysiosforME. A very helpful article.

 

[PhysiosforME]

ME Awareness Day: new article

This ME Awareness Day we are pleased to have a new article published in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!)The article is called: "Do no harm: supporting people with ME/CFS.How can...

www.physiosforme.com

New blog post:

---

ME Awareness Day: new article​

This ME Awareness Day we are pleased to have a new article published in the Chartered Society of Physiotherapy's magazine "Frontline", which goes out to all chartered physiotherapists in the UK (that's over 67,000!)

The article is called:



In this article we discuss the recent Department for Health and Social Care delivery plan for people with ME, in particular that people need to "feel safe and supported by services and professionals in line with other long-term health conditions.’

We highlight that "feeling safe" is an unusual phrase to use, then give an overview of the issues facing people with ME and traditional physiotherapy management. We discuss ways a physio could adapt their approach when supporting with a person with ME, and signpost the training modules now available from the delivery plan, as well as our own resources.

Publishing an article like this has been one of our goals since we first formed as a group, so we are delighted to have an article published in a publication with such reach, and that the CSP have taken this matter with the seriousness it deserves.

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Thank you for sharing - you beat me to it!