"Demystifying CFS / ME" – Jessica Bavinton (recording of October 2015 webinar)

[Wolfiness]

I used her company vitality360.co.uk. I was not compliant - hyper and overdoing - but they were pretty underwhelming. My therapist had done GET for PACE. If she was an expert, well...

 

[Esther12]

This is a link to the VRA Informed Consent Guide
https://vrassociationuk.com/resources/vra-informed-consent-guide/

The Association appears to take a proper interest in the matter.

EDITED to remove gobbledygook

Thanks.

I've uploaded a copy here. (It's annoying how often things like this linked to on this forum can end up going off-line).

 

[Esther12]

That was a pretty good document. I didn't pull out all the good bits, but just a flavour. A bit odd considering what I remember of that Bavinton talk. We need the author of this (David Booth) to take Bavinton on!

Partial or skewed information not only impedes gaining valid consent but also opens
the VR practitioner to claims of misleading the client, which of course can lead to
some very serious consequences for the practitioner in terms of professional
complaints and legal claims, etc.

Additionally, the practitioner should seek to re-validate the client’s consent if new
information arises that may affect their willingness to consent or changes occur to the
programme, provider or procedures, etc. The practitioner ought to take the same
precautions and care when re-validating informed consent as when they originally
gained this and avoid any temptation to take short cuts.

Surprised by this bit, considering their links to insurance companies:

Freedom

The client should have the right to choose freely whether to participate in the services
offered and also to withdraw from those services at any time. In order to exercise this
freedom the client should be free from any extraneous forces real or perceived that
may potentially force them to cooperate.

The VR practitioner should be aware that any agreement to cooperate with the
intervention may not be valid cooperation but in fact as a result of pressure, real or
perceived, applied on the client to force their cooperation. Such things may seem
extreme but as practitioners we often have a certain status or seem to be in a position
of power over the client. Pressure to simply cooperate without exercising full informed
decision making is therefore a very real and not an extreme circumstance for us.

The position is doubly problematic when working on employment retention cases, with
insurance companies, statutory programmes or as part of a court case. It is very easy
for the client to see us as representing the interests of the employer, Government,
case handler or opposing party rather than as a neutral agent working in the interests
of the client. In any of the cases mentioned above the client can unduly accept but
also unduly withdraw their cooperation, either of these may be because of the client’s
perception of extraneous influences. Therefore they cannot be truly accurately
described as exercising informed consent as the action may bring consequences that
in other circumstances the client would want to avoid or deny benefits that they
would ordinarily wish to have.

Others outside of the VR practitioner’s immediate relationship with the client may also
exert undue influences like partners, managers, other practitioners, family or friends.
The practitioner needs to account for the potential for this and to try to ensure that the
client is making the best decision for them by not contributing any additional undue
pressures on the client for compliance. Apart from directly applying pressure for the
client to agree to receive the service, the practitioner should avoid coercing the client
into agreement by giving only partial information, minimising the risks or by over-
promising the effectiveness or benefits of their services.

 

[jaybird1]

Very interesting webinar; I found her personally to be very relaxed, sympathetic, understanding, personable. She met my wife, my boss, visited me at home and at work. It was all very positive. However: the whole practice of GET relies on the 'diagnosis' of CFS/ME to be so terribly lax - exclude a small number of other possible causes and that's it. I never had any brain scans, neurological tests, lumber punctures, sleep disorder testing...not even a urine sample (to much info...sorry!). So in my mind I may have something else OR neurological ME and not chronic fatigue but unless I pay for private testing I'll never know. It's an exploitation of the system.

 

[ladycatlover]

She sounded far too much "Jolly Hockeysticks" (for people outside UK, that's over-enthusiastic sports teachers, usually female, who assume everyone is brill at sports and if not it's down to laziness not inability. I've known too many of them, and looking back I now wonder if I was sub clinical ME/CFS from a young age) to me to feel she cared about anyone in her care compared to her care for herself.

I think she's a dangerous woman for anyone with ME/CFS, and as to what the VRA stuff on Informed Consent, she obviously doesn't comply. Grrr.

 

[slysaint]

I've just listened to it and some of it sounded OK (eg CFS/ME is not depression) but then about 25 minutes in and the treatment bit is pure PACE. Even their very limited stats showing percentages of return to work were dodgy as a large percentage (43%) were deemed to have not completed sufficient sessions.

eta: Vitality360
About Us

We provide effective evidence-based rehabilitation delivered by leading fatigue and pain specialists. We are all experienced in supporting people with CFS/ME, fatigue, fibromyalgia and chronic pain. We can provide physiotherapy, occupational therapy, Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET), specialist dietetics and psychotherapy.

could be another PACE casualty

 

[Sean]

I've just listened to it and some of it sounded OK (eg CFS/ME is not depression

That has been known and accepted by the psychs for years. It is no great concession or advance.

could be another PACE casualty

There is going to be more than a few, not just in medicine either.

 

[akrasia]

Why am I so surprised that I continue to be surprised just how low calibre the PACE people were?
This bears no resemblance to an intellectually competent presentation. She might as well be selling cosmetics.

Hm...

Well, PACE/BPS is a a cover up...

 

[jaybird1]

When I started to show signs of non-recovery, I was handed over to another member of the team. This OT was brilliant - she could see that I was not well and that I had done far too much; however she was obviously being directed as to how treatment should progress. After keeping exercise and symptom diaries and providing them with a graph of the results which showed me getting worse she told me to stop keeping the diaries and not focus on the symptoms. Instead I was told to focus on what I could do, stay positive and try out mindfulness. Yep - mindfulness via the medium of Skype. I gave it a go - out of curiosity - but nope, made no difference. I felt sorry for the new OT, she knew it wasn't working and she knew I needed real medical intervention but I guess she valued her job! A week after yet more of the same she phoned me with a set of 'questions' I needed to answer (where did they come from??). 1: Do we need to move the goalposts? 2: Do you really want to get back to work? 3: Is there something stopping you from getting better that we don't know about......I'm ashamed to say I lost it at that point and reminded her of what me and my family had been through over the last year and if for one minute they thought I was putting this on then I'm done with this. She reported this back, and a few weeks later I was told there's no more funding available. I wasn't party to any correspondence between the insurance company and my employer so I don't know what was actually reported back (I do have in writing that I was co-operating fully with the programme at the start ) so I can only guess after that my card was marked and 6 months later, ill health dismissed.

 

[Snow Leopard]

It seems to me that the therapists don't seem to read the literature (either at all, or at face value at most, not understanding the limitations of unblinded trials). Hence the they are "surprised" when patients don't improve, hence the inevitable patient blaming (whether they realise they are doing this or not).

Fact is that the evidence base for CBT & GET overwhelmingly shows a lack of change in return to work after treatment, both in clinical trials and the audit of the Belgian rehabilitation approach (had reasonably high sample size).

 

[Daisymay]

It seems to me that the therapists don't seem to read the literature (either at all, or at face value at most, not understanding the limitations of unblinded trials). Hence the they are "surprised" when patients don't improve, hence the inevitable patient blaming (whether they realise they are doing this or not).

Fact is that the evidence base for CBT & GET overwhelmingly shows a lack of change in return to work after treatment, both in clinical trials and the audit of the Belgian rehabilitation approach (had reasonably high sample size).

And very importantly they are seemingly unaware of the existence of all the biomedical research, IOM report, which totally invalidates the premise on which CBT/GET are based.

I find it quite shocking and puzzling that professionals in a controversial field like ME fail to look into the whole issue, instead blindly accepting what their superiors tell them.

 

[Solstice]

And very importantly they are seemingly unaware of the existence of all the biomedical research, IOM report, which totally invalidates the premise on which CBT/GET are based.

I find it quite shocking and puzzling that professionals in a controversial field like ME fail to look into the whole issue, instead blindly accepting what their superiors tell them.

Would there really have been noone that told them about the biomedical research though? Some well-informed patients or whatever...

 

[jaybird1]

When a multi-million pound industry relies on there being just one outcome - full recovery (so no insurance payments necessary) or no recovery and unfit for work so dismissed (so no insurance payments necessary) then you too would ignore anything anyone else, no matter how much more scientific and true it may be, says.

 

[Solstice]

When a multi-million pound industry relies on there being just one outcome - full recovery (so no insurance payments necessary) or no recovery and unfit for work so dismissed (so no insurance payments necessary) then you too would ignore anything anyone else, no matter how much more scientific and true it may be, says.

Well, i'd hope I would not when so many lives are at stake tbh.

 

[jaybird1]

I guess it all depends on whether they believe so many lives are actually at stake (and I would suggest that when they believe all we need to do is get out more and be positive they don't). It does beggar belief how the GMC don't consider any of this to be harming patients and negligence.

 

[Daisymay]

Well, i'd hope I would not when so many lives are at stake tbh.

Absolutely, there is no valid excuse for this, none whatsoever.

 

[Daisymay]

Would there really have been noone that told them about the biomedical research though? Some well-informed patients or whatever...

Exactly as well as the info being readily available in journals and online, some patients would inform them too.

 

[slysaint]

Would there really have been noone that told them about the biomedical research though?

Trouble is when you have people like Chalder and Crawley who are supposed to be experts doing webinars, talks and the like, telling them that none of the bio-medical research has been replicated and so is therefore irrelevent, who are they to believe? .......Plus it [CBT/GET] is still on the NHS/NICE guidelines.
And as for listening to the patients.........well we all know what they think of us

 

[Wolfiness]

And very importantly they are seemingly unaware of the existence of all the biomedical research, IOM report, which totally invalidates the premise on which CBT/GET are based.

I find it quite shocking and puzzling that professionals in a controversial field like ME fail to look into the whole issue, instead blindly accepting what their superiors tell them.

Mine said "I don't know what ME is, I just know that GET makes it better". Also "I've never made anyone worse."

 

[Daisymay]

Mine said "I don't know what ME is, I just know that GET makes it better". Also "I've never made anyone worse."

Dear goodness......was that a doctor, physio, occupational therapist?