United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

Ahh ... that's because you do not have a random-sentence-demystifier app .

 

I haven't been following this thread, so don't know whether the following information has already been posted or not:


From: Dr. Marc-Alexander Fluks


Programme: Dr Phil's Bedside Manner
Station: BBC Radio 4
Date: Thursday
Time: 18:30 (and 7:30, 17:30, and 22:00 BBC Radio 4 Extra),
(Friday: 5:30 BBC Radio 4 Extra) BST
URL: https://www.bbc.co.uk/sounds/brand/m000z0r9
https://www.bbc.co.uk/programmes/m000z0r8

Part 1
Date: August 26, 2021
WebRadio: https://www.bbc.co.uk/sounds/play/m000z0r7

Part 2
Date: September 2, 2021
WebRadio: https://www.bbc.co.uk/sounds/play/m000z6xl

Part 3 (covers ME)
Date: September 9, 2021
WebRadio: https://www.bbc.co.uk/sounds/play/m000zcc2

Part 4
Date: September 16, 2021
WebRadio: https://www.bbc.co.uk/sounds/play/m000zmjl

 

https://twitter.com/user/status/1450133283875049474

 

I don't tweet but here's what I would reply: Frustrating. Now imagine doing all of that with a chronic illness that limits your energy and fogs your brain. We are usually exactly as disabled for exactly the same reasons every time we have to fill out exactly the same forms for benefits we wish we didn't need, and then spend a few weeks or months with worse symptoms, or have a long-term relapse for our troubles.

 

Took the words right out of my mouth!

 

The paperwork may be unnecessary but the far bigger problem is that so many doctors, like Hammond, are financially incentivised to retire at 60 when they are fit and healthy and want to carry on working, resulting in many doctors going back to their old jobs to get paid extra on top of their NHS pensions. This must be costing the NHS a fortune.

 

Surely after the barrels he's stared down a bit of paperwork should be a piece of cake? Looks like catastophizing to me.

 

https://twitter.com/user/status/1454897913000235012

 

Indeed he would not know about that, no matter how common. The idea that if the patient doesn't come back it means the problem is gone has done enormous damage. Especially as it's almost always wrong, instead people simply accept that medicine still has a lot to learn and usually can't do much. It's about damn time medicine accepts that lesson and its many implications.

 

Is this going to be his response?

He didn't responded directly, are they expected to follow all his tweets?

Where is the ownership?

https://twitter.com/user/status/1455215833580507141

 

Yeah, right Dr Phil, because the NHS is known to be open to complaints and criticism from patients.

Given the patients are children and the families are so vulnerable to action from social services, do you really expect parents to risk sticking their heads above the parapet if they have the option to quietly disappear?

Has it really never occurred to you to do long term follow ups on your patients and actually ask them?

 

IMO, this is a core issue for the BPS supporters. They, like anyone else, see themselves as good people, competent people who do good work to be admired by the general population.

This idea of harms strikes the kind of blow that is too painful to acknowledge. So they (probably with a frisson of anxiety) cast about and rationalise that it must be something else -- not that. Without, I think ever meaning to or consciously setting the whole thing in motion. The rest is just doubling-down.

Having read (some of) the comments from BPS stakeholders what strikes me is that (ironically) they are mired in emotion (and again perhaps a hint of panic).

I doubt Phil Hammond recognises the Phil Hammond we see from our POV. He can't. Few people could.

So now faced with the comment from Ms Ephgrave -- shhhhh, secret, secret. For the patients sake of course.

And now I'm just drivelling on but one could see the BPS'ers as examples of success of the power of positivity framework. The dark underbelly of which is that it is not a particularly good reflection of reality.

Now reality has come to call . . .

 

Imagine if they only monitored and reviewed Parkinsons and MS patients for 6-12 months maximum from the initial GP referral for the investigation of their symptoms. What would their understanding of these conditions look like? There would be no such thing as relapsing and remitting MS, and definitely not the progressive form of it. Parkinsons would consist only of mild tremors etc., etc.

 

As we observe PHs ‘retirement’ Tweet. We comprehend. He acts in-line with his aims and values. There is no misstep. No misunderstanding. On his part.

Perhaps it hits too hard after everything?
We are bruised or broken. We cannot bare to perceive what is set out before us.

We cannot watch a mother speak of the injuries to her daughter without compassion.
We fail to accept others have different priorities.

He could not respond to this mother any other way. He had to dismiss her. It was already chosen.

If he did not wish to harm he would not of told us of his kindness. Not so soon after telling us we were wrong to ask him to stop harmful practice. Grown children and their parents cried out to him in response. They were damaged and suffering. He would not have told them then that the children had liked it his way.

 

I’m sure he would much prefer it all to be confidential rather than out there on social media.

 

Understandable but he can take it offline. If he doesn't respond directly to her with something like can I send you a DM? She might not see the tweet. What if the complaint doesn't get anywhere or she's already complained?

 

As they say here .....A big boy did it and ran away......

 

Perhaps trying to avoid more of this..
https://twitter.com/user/status/1455126819729027078