Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

[Sidereal]

POTS has been psychologised for a long time and the deconditioning model is regularly applied to it. More recently, I am seeing the 'central sensitisation' model (Psychobabble: 21st century neurobabble language update) being discussed in relation to it and there are all sorts of crappy neuroimaging studies coming out purporting to show this or that about the insula in POTS, the sorts of studies that @Woolie expertly takes apart.

Years ago when I was diagnosed with POTS by a neurologist who trained at Queen's Square, London I was told to exercise my way out of it using the Levine programme. I was skeptical as I was bedridden at the time so I went and looked at this guy's studies which claim to reverse POTS by reconditioning the patient and they were absolute rubbish. Massive selection bias and dropout which weeds out everyone who can't be reconditioned and then the cherry-picked sample of the healthiest lot gets a statistically significant reduction in heart rate and the GET is declared a success.

I am not surprised to see the Eye of Sauron (insurance companies) turning on POTS because there is an epidemic of dysautonomia in young women out there getting all these vaccines like HPV they're being pumped with now that our generations never got and ending up disabled before even finishing high school, let alone working in a job. Also, more and more people who were previously fobbed off with a diagnosis of "CFS" are getting TTT testing and finding objective evidence of disability so they have to find ways to counter their financial exposures to this rising tide of disability.

 

[Chrisb]

When discussing the ombudsman's decision above I think it is necessary to be careful as to the conclusions one draws. The specific case appears to have concerned a disclosure of a pre-existing condition of ME at the time the policy was signed and it would seem entirely normal for that condition to be excluded.

There would be all sorts of arguments which might be used against the suggested wordings in a case where a policy holder subsequently developed ME.

 

[Snow Leopard]

If Peter White and his friends really cared about limiting the stigma of mental illness and ending the stupid debate about mind ('mental illness') vs body ('physical illness'), then why don't they campaign against the insurance company discrimination against mental illnesses?

Patients might resist mental illness diagnoses because it means they will get ripped off by insurance companies.

 

[PDXhausted]

Forgive me if this is a dumb idea, but could patients that received CBT/GET through their Swiss Re insurance and were harmed... Could there be grounds for a class action law suit there?

I've heard of being denied treatment grounds for a lawsuit, but I wonder if it could work the other way (harmed by treatment that was promoted by insurance and deemed safe).

 

[Denise]

David Tuller has a piece partly on this:
Trial by Error: Retired PACE Investigator Peter White and Swiss Re
http://www.virology.ws/2017/08/07/trial-by-error-retired-pace-investigator-peter-white-and-swiss-re/

 

[Invisible Woman]

Forgive me if this is a dumb idea, but could patients that received CBT/GET through their Swiss Re insurance and were harmed... Could there be grounds for a class action law suit there?

I've heard of being denied treatment grounds for a lawsuit, but I wonder if it could work the other way (harmed by treatment that was promoted by insurance and deemed safe).

I believe this is the reason why they deliberately failed to investigate harms during the PACE trial. That ability to prove harm was done based on the advice of the insurer is crucial. It would also have professional consequences for medical staff providing/supervising the treatment too.

 

[PDXhausted]

I believe this is the reason why they deliberately failed to investigate harms during the PACE trial. That ability to prove harm was done based on the advice of the insurer is crucial. It would also have professional consequences for medical staff providing/supervising the treatment too.

Ugh.

But regardless of whether they investigated... If enough patients experienced harm, wouldn't that be enough? I suppose the problem is actually documenting the harm related to the treatment.

Tagging our resident law brain @Valentijn

 

[Valentijn]

I believe this is the reason why they deliberately failed to investigate harms during the PACE trial. That ability to prove harm was done based on the advice of the insurer is crucial. It would also have professional consequences for medical staff providing/supervising the treatment too.

This is just a very weird situation to me. I simply can't imagine disability insurers ever having a say in which treatments a patient must try before they are eligible to collect the benefits they're entitled to. That should be entirely up to the patient and his or her doctors. Does this happen at all in the US, or is it just a UK thing?

Tagging our resident law brain @Valentijn

No idea, really. I avoided contract law as much as possible, and insurance especially can have drastically different regulations in different jurisdictions. I doubt there's much similarity between the UK and whatever US concepts I don't remember

 

[Sbag]

It is not too clear what rationale this particular insurance company (@Sbag did not mention their name) uses to define mental health disorders, but going by their list, even fatigue is classed as a mental disorder, so perhaps that is why they may be categorizing ME as a mental disorder.

I am not entirely sure if insurance companies are required by law to abide by the ICD disease classification (in which ME is defined as a neurological disorder, not a mental one), or whether these companies are free to make their own classifications. If the latter, then I guess there is not much we can do about it.

This quote came from a Scottish Widows policy but it was sent to me from someone at the Special Risks bureau who said it is currently used in policies by a number of insurers. I had been pointed to the Special Risks Bureau when I was also trying to find out whether insurance companies are supposed to follow any guidelines or if they are allowed to make up their own definitions. I had contacted the Association of British Insurers which is the body that provides guidelines etc but they wouldn't tell me anything about it because I was not an insurer. They do publish a guidelines document but I don't recall seeing anything in there about how they should classify things. It does say that they should use the definitions for certain medical conditions but these are the ones which are normally listed as being covered ie heart attack.
Today I thought of another organisation I could ask and I contacted the Financial Conduct Authority to see what they could say. The guy I spoke to couldn't find anything saying that they had to use X guidelines for categorising diseases but the general rules set by the FCA say that the terms should not be misleading.

The company I am dealing with is Aviva

 

[Sbag]

When discussing the ombudsman's decision above I think it is necessary to be careful as to the conclusions one draws. The specific case appears to have concerned a disclosure of a pre-existing condition of ME at the time the policy was signed and it would seem entirely normal for that condition to be excluded.

There would be all sorts of arguments which might be used against the suggested wordings in a case where a policy holder subsequently developed ME.

I agree that it is not a straightforward case as it says he did have ME when he took out the policy. But it seems odd that he was later allowed to claim for it so I'm not sure how accurate that is. Either way the main fact I was taking from it was that they lumped it under the mental health umbrella. There is another decision on their site which is pretty much the same but the lady had Fibromyalgia although she didn't have it when she took the policy out but again it was lumped under the mental health umbrella and denied.

Yes people can appeal decisions and go through the laborious process of proving why ME is not a mental health disease. The ombudsman will look at each case individually and take a view on whether the insurance company was ambiguous etc. However if you have signed the document where it is listed as a mental health condition then the ombudsman can also say that as you signed they agree with the insurer and it seems the fact that it is categorised differently by all of the medical bodies has no bearing on the matter. Most people taking out critical illness policies won't even think to question that part as normally people take them out for the big illnesses that are listed, and there is a certain degree of faith that the insurance companies are doing and saying what they are supposed to.
I had been told in the past when I had tried to claim that I wasn't covered as it was a mental health disease and I have an exclusion for that. Being ill, tired, brain fogged etc I had taken what they told me as true and had gone away from it. It was only this time where I tried again because I am now desperate and again they said no because it's mental health etc so I asked them to write to me clarifying why they were rejecting me and how they classify ME and do they use WHO etc. Purely because I had asked them to explain themselves is the only reason I was then sent a claim form.
They rely on people not challenging them and not knowing how they work. That way they win most of their cases. Of the few that do get to court because someone does challenge them they settle outside of court and put a gagging order on the claimant. This was they also don't have anything reported in the legal case system which would provide ammunition for anyone else claiming. I have also done a search of the UK legal cases and there are very few that come up for ME and critical illness so this lends weight to this practice.

There doesn't seem to be a way to challenge this practice - if it's in relation to a specific case then you can complain and go through the system for your case but it doesn't have any implication on how the industry carried on categorising ME. I will keep trying to find a way in which this can be complained about but at the moment I have not found it. Brain fog only allows so much but I will keep trying as this is part of the whole background as to why the psychologists are trying to keep it as a mental disease. there has been a lot written about all of this including the latest book on Politics, Science and ME which goes through the links with the insurance industry. I have not read it all yet so if it doesn't give enough info then please excuse the reference to it - there are lots of others including Hooper's writings.

Unfortunately my brain has decided to stop making sense now so if I remember any other salient points I will add them tomorrow. I am waiting to hear back from the FCA on what I might be able to do to take this further so if I hear from the I will report back. If there is anyone that can help with further thoughts or suggestions though please chime in.

 

[JaimeS]

Does this happen at all in the US

Not that I'm aware of, no. You are not required to get specific treatments in order to have insurance... though admittedly I'm no expert in insurance law.

 

[Invisible Woman]

This is just a very weird situation to me. I simply can't imagine disability insurers ever having a say in which treatments a patient must try before they are eligible to collect the benefits they're entitled to. That should be entirely up to the patient and his or her doctors. Does this happen at all in the US, or is it just a UK thing?

In the UK they can do. It depends on the policy. As far as I know some PHI type policies can insist that the policyholder comply with treatments they deem appropriate.

As with everything it's all in the small print.

 

[lilpink]

In which case, quite aside from PACE, surely it is a clear COI (could it even be malparactice of some kind?) to be heading a department that is treating a specific patient for a disease, whilst advising a medical insurance company to not pay out to that same person, until further treatment (as administered by your department) has been accepted by that same patient, as administered by that same department. It all stinks to high heaven. Would be a good question for him to answer at the upcoming Swiss Re summit.

This strikes me as a very valid point.

 

[Sbag]

This is just a very weird situation to me. I simply can't imagine disability insurers ever having a say in which treatments a patient must try before they are eligible to collect the benefits they're entitled to. That should be entirely up to the patient and his or her doctors. Does this happen at all in the US, or is it just a UK thing?


No idea, really. I avoided contract law as much as possible, and insurance especially can have drastically different regulations in different jurisdictions. I doubt there's much similarity between the UK and whatever US concepts I don't remember

The reason they can have a say in treatments is that if you are claiming you have a disease that is affecting your life expectancy or ability to work for example they have to know that you have tried the relevant treatments in order to try and get rid of it. If you are claiming for permanent disability this becomes even more relevant as if there is a treatment that might make you better and you have not tried it then they could say you should try it before they rule on your case. For permanent disability you have to be permanently unable to work with thee current medical treatments and science being taken into account. So if you have tried the recommended treatments and are still ill and have no prognosis of getting better then they should pay out. If you haven't tried treatments then they will say that you may get better it you try them so they won't pay out as there may be something that could have a positive effect on your condition. But they can't say that something may be developed in the future that could treat your condition which is where the current science terminology comes in.
So this is where the waters get muddied and the story comes together in what the recommended treatments are. If NICE, NHS, CDC etc all say that GET and CBT are the recommended treatments for ME then if you have not tried them they could refuse a claim. This is why the wording around them in their sites is so important and why the fact that the CDC has changed theirs is so monumental. With "experts" working on insurance panels and advising NICE this is how they influence what the treatment options are, how they get the business from it, and how they save insurers money.

 

[Dolphin]

I thought I would point out that Peter White has an OBE.

ETA: https://en.wikipedia.org/wiki/Order_of_the_British_Empire

 

[JaimeS]

I thought I would point out that Peter White has an OBE.

A what-now?

 

[Dolphin]

A what-now?

https://en.wikipedia.org/wiki/Order_of_the_British_Empire

 

[Luther Blissett]

I thought I would point out that Peter White has an OBE.

ETA: https://en.wikipedia.org/wiki/Order_of_the_British_Empire

I prefer a lot of the people who turned them down,

https://en.wikipedia.org/wiki/List_of_people_who_have_declined_a_British_honour

 

[slysaint]

surely it is a clear COI (could it even be malparactice of some kind?) to be heading a department that is treating a specific patient for a disease, whilst advising a medical insurance company to not pay out to that same person, until further treatment (as administered by your department) has been accepted by that same patient, as administered by that same department.

Quite. But I've been trying to find out just who the regulatory body is/would be, both in relation to issues like this and research.
This might breach the GMCs code, but this is not just a GP stepping out of line.
http://forums.phoenixrising.me/inde...ent-does-it-breach-gmc-code-of-conduct.52957/

It may be more a question of ethics, but there are so many breaches of that across the health and social services sector. GPs get lots of freebies and promotional stuff from pharma companies and various incentives to use their products, and the 'system' considers it all perfectly ethical(?).

As seen time and again with the Parliamentary questions no one seems to be accountable; the buck gets passed from one organisation to the next.

 

[Sbag]

These links might be of interest for some more background on the insurance side of things:
https://www.google.co.uk/url?sa=t&s...ghRMAU&usg=AFQjCNF2EjQ5NyNma4A8__le05ov1Qfzsw
http://www.meactionuk.org.uk/Notes_on_the_Insurance_issue_in_ME.htm

I also found a leaflet from the Chartered Institute of Insurers on claims for illness which had info on legislation:
see picture attached.

It looks like in the past you can send things to the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) and this seems to be managed in part by Action for ME so maybe that is the best route to go?