NHS Bristol on 'Management of somatoform disorders' - read this and weep.

[anniekim]

Sorry, yes, you are right @alex3619. Just read this "An increase in deaths while claiming incapacity benefits to an average of 99 deaths per day or 692 per week, between the start of December 2011 and the end of February 2014 – compared with 32 deaths per day/222 per week between January and November 2011." http://voxpoliticalonline.com/2015/...le-claiming-incapacity-benefits-nears-100000/

 

[RogerBlack]

http://voxpoliticalonline.com/2015/...le-claiming-incapacity-benefits-nears-100000/

There are a number of problems with this piece.

For example, the work-related activity group is composed entirely of people who are expected to recover from their illnesses and be well enough to return to work within a year. In that group, there should be no deaths at all – barring accidents. Why have nearly 10,000 people lost their lives after being assigned there?

This is a flat out lie, admittedly one promoted by some people in government.

If you don't have a diagnosis of terminal illness, this group includes people who are not quite sick enough to meet the more severe groups criteria, including long-standing conditions. It says nothing about prognosis or likely return to work to be in this group. It may be true of the group as a wholes population, but it's very untrue in particular cases that may lead to deaths. People with broken legs and other short-term illnesses or disabilities are a large fraction.

As one example, if you have a heart attack, and your doctor advises that work is unsafe for a few months while you recover, but go on to suffer a fatal heart attack.
Or similarly a stroke. Or if you have believed non-terminal cancer, but don't go through the formaility of informing the DWP when you get a terminal diagnosis.

The 'expected' number of deaths in this group should be compared to a moderately sick population, for obvious reasons, not healthy people.
It could even be positive if it was a result of a benefit uptake campaign, meaning more sick people claim. (I do not believe this to be the case).
Careful analysis needs to be done, and is made enormously problematic by the terrible statistics produced by the DWP.

 

[Valentijn]

People with broken legs and other short-term illnesses or disabilities are a large fraction.

I'm pretty sure short-term illnesses and disabilities wouldn't be on ESA at all. It's for longer-term illness and disability. But people in the WRAG should either be capable of work, or expected to recover sufficiently to work within two years. Though that latter requirement for participation is a bit cruel - if someone is too sick to work, then they're also too sick to be forced to undergo training.

 

[RogerBlack]

I'm pretty sure short-term illnesses and disabilities wouldn't be on ESA at all. It's for longer-term illness and disability. But people in the WRAG should either be capable of work, or expected to recover sufficiently to work within two years. Though that latter requirement for participation is a bit cruel - if someone is too sick to work, then they're also too sick to be forced to undergo training.

The above is however precisely not what ESA is. Eligibility for ESA is not something that can be described in two short paragraphs (say the above and one for the support group). It is for people who meet the regulations and tests set down by parliament.

You are in the support group if you are found to meet any of one set of strict criteria. For example:

Absence or loss of control whilst conscious leading to extensive evacuation of the bowel and/or bladder, other than enuresis (bed-wetting), despite the wearing or use of any aids or adaptations which are normally, or could reasonably be, worn or used.
At least once a week experiences
(i) loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or
(ii) substantial leakage of the contents of a collecting device;
sufficient to require cleaning and a change in clothing.

(there are sixteen of these).
You can also be placed in the support group if it would be dangerous to you to undergo training or other requirements. (and for a number of other reasons).

Being unlikely to ever work again is not a reason to be placed in the support group.
Being unlikely to benefit from training you may be required to go on is not a reason to be placed in the support group.

A (slightly contrived) example is someone who:
is found fully fit, if they use a wheelchair, and can't walk, can slowly wheel themselves over 200m. Only work for 90 minutes at a time before becoming utterly exhausted. Have difficulty conveying or understanding more than simple messages from strangers. Once every couple of months has a sudden accident where they lose control of their bowels. Can barely operate a washing machine. Several hours a day can't cope with trying to talk to new people.

This person could be properly found fit for work (they fail to quite gain 15 points to be in the 'work related' group, and have no simple risk to health if found fit).


37% or so recover before assessment. (nominally at 15 weeks)
https://www.gov.uk/government/stati...datory-reconsiderations-and-appeals-june-2017

Also, apologies for OT.

 

[Maggie21]

Are there some sort of weird ley lines or something in the Bristol area?

Well . . . it's not a million miles from Glastonbury!

 

[Maggie21]

Somatoform disorder as a diagnosis is as bankrupt now as these diagnoses were back when Charcot started to formalize the definition of hysteria. Many of his patients fit the profile of what would be now called epilepsy. Or consider tuberculosis as arising from a tubercular personality.

Freud's first famous success probably died in a Swiss asylum. So much for his success.

The problem with a lot of this is we look for rational answers, for accountability, and what we find is politics and unaccountability. That holds for somatization and ME alike. It goes way beyond that, but I don't want to debate that here.

The problem is that lies form a bad basis for policy, growth and stability. It might take a very long time but at some point the bill is presented. Its like a big game of inter-generational musical chairs. When you promote this stuff you are hoping the music doesn't stop in your generation of "experts". If you do get caught you hope to pass the bill along to someone else, or blame someone else.

They also try to spin things in new ways, hoping people wont catch on. Hysteria, conversion disorder, psychosomatic, psychogenic, functional disorders, unexplained symptoms ... same pond water in new rose bottles, but they keep having to change the names.

Economics is similar. Why have we not fixed the problems that led to the global financial crisis?

In case anyone is in any doubt, many of my questions are rhetorical. We know at least some of the answers.

We need to see the struggle for justice for ME and CFS patients as a political struggle as well as a search for scientific discovery. We need to consider others fighting similar struggles as our allies. That would include other disease groups that have been poorly treated.

One of the interesting tricks of power is to convince people they have no power. Yet the public always has the power to change things, a point made by Machiavelli. Always. Things don't happen only because people don't get organized.

I really hope the Rituximab trials are a big success, and we should know in as little as two months.

Spot on!

In fact to my mind that seems to be the whole approach the psychobabble brigade have to ME and any other condition they can sink their claws into; isolate them then belittle them. That way you can control the narrative they receive, plus no-one else gets to know just what you are doing or can interfere and above all no-one else can do anything dangerous like tell the patient 'actually it's not all in your head'. Strikes me that is exactly what they are proposing with these 'guidelines'.

It's a very sinister way for someone in a 'caring profession' to behave. As others on facebook have been saying, it's how abusive people behave towards their victims - isolate, control and abuse away. Creepy!

And as you say we need to gain the support of other groups of society that this sort of thing is happening to because the number really does seem to be growing.

 

[Barry53]

''Attempt to be the patient’s only physician and to minimise patient’s contact with other healthcare professionals.''

This smacks of isolation techniques used by psychological abusers.

"Controlling behaviour is a range of acts designed to make a person subordinate and/or dependent by isolating them from sources of support".

https://www.gov.uk/guidance/domestic-violence-and-abuse#domestic-violence-and-abuse-new-definition.

It is indeed positively creepy-Crawley.

 

[anniekim]

@RogerBlack, @Valentijn

"What is the employment and support allowance work-related activity group?
The ESA work-related activity group is for claimants who the DWP consider will be capable of work at some time in the future and who they consider are capable of taking steps immediately towards moving into work (work-related activities).

However, the law explicitly states that work-related activities must not require claimants to 'apply for a job or undertake work, whether as an employee or otherwise''. "

https://benefitsandwork.co.uk/emplo...esa-glossary/1345-work-related-activity-group

Take away - supposedly I presume "more likely to improve", so less likely to die, but yes comparable should be against moderate sick death rates. Sorry if this benefit discussion is derailing thread.

 

[SilverbladeTE]

PS
I said "Non violent Republican groups" in previous post
This was referring to Northern Ireland, and the Republican movement there which is completely different form American political party
it's a political goal of wishing Ireland free of British rule completely and for some of them it means the original meaning of "Republican" (wishing a Republic), it has nothing to do with conservative politics.

Sorry, I should have explained that fully

 

[Jonathan Edwards]

I'll have a think about writing to my MP, but my instinct is to keep my neck under the parapet for this one. I do quite a lot of general advocacy but I'm not sure about the wisdom of taking on healthcare in the place where I need healthcare! Is there a non Bristol person who could query this or someone who isn't a patient? Perhaps @Jonathan Edwards ?

I think this is terrible but I rather suspect nobody will ever read it. It is under 'neuropsychiatry' and there isn;t even a specialty called that. Looking at other entries it looks to me as if somebody in admin has been given the job of writing all this stuff and has asked doctors to give them quotes. In this case the quotes came from an Albanian locum registrar in psychiatry. Presumably the person in admin has no better English than the locum reg. We can see the real thoughts leaking through because both are too dumb to see what is leaking.

To suggest that a little bit of examination might be done sometimes and that healthcare workers should be kept away is tantamount to negligence. But whoever this is supposed to be aimed at is not going to even read it.

 

[Jenny TipsforME]

We can see the real thoughts leaking through because both are too dumb to see what is leaking.

I think you've hit the nail on the head there. In this instance the underlying dynamic has become apparent. I think as patients many of us have sensed this dynamic, but with doctors who are too astute to be blatant about it. So much so that it feels like an achievement as a UK ME patient to find doctors who aren't this way inclined. My GP doesn't seem to think like this. If you have a GP who does you're screwed because they're gatekeepers to other services and they think referring you to other doctors risks medicalising your condition.

Potentially this relatively obscure website page might give an opportunity to confront this way of thinking about patients (which I suspect is fairly widespread not isolated to just the locum and admin assistant).