Catch-22 (almost): Exercise programs and disability insurance companies

[Dolphin]

Some of you may have heard of cases where disability insurance companies (i.e. the type that pay you an income if you become unable to work) have said they wouldn't give a payment until somebody had done the evidence-based treatments of graded exercise therapy (GET) and/or cognitive behavioral therapy (CBT).

I heard indirectly an interesting twist on this recently: the insurance company said as the the person was able to do an exercise program*, it suggested the person was able to work!

In this particular case, the person has a professional desk job, and has cognitive difficulties which they feel makes it impossible for them to work.

* this person was doing quite a lot - 40 minutes at a go - although it is unclear if they are really able to do this amount or pushing themselves too hard.

 

[Esther12]

I know someone who was working at the Citizens Advice Bureau, and had a client who was being told by Unum that they were only eligible for a six month pay out, as if they genuinely wanted to return to work and followed a CBT/GET programme, then it would only take them six month to be able to return to work (based on their 'medical expert''s assessment).

This was years back, when I knew less about CFS and the politics that surrounded it, but I wish I'd got more details, or encouraged them to get in contact with a CFS charity. Getting more evidence of these sorts of things in to the public sphere would be helpful for showing how the way in which CBT/GET is promoted can be harmful to patients.

 

[Dolphin]

I know someone who was working at the Citizens Advice Bureau, and had a client who was being told by Unum that they were only eligible for a six month pay out, as if they genuinely wanted to return to work and followed a CBT/GET programme, then it would only take them six month to be able to return to work (based on their 'medical expert''s assessment).

This was years back, when I knew less about CFS and the politics that surrounded it, but I wish I'd got more details, or encouraged them to get in contact with a CFS charity. Getting more evidence of these sorts of things in to the public sphere would be helpful for showing how the way in which CBT/GET is promoted can be harmful to patients.

That's interesting.

http://forums.phoenixrising.me/show...raft-NICE-guidelines-insight-into-their-views

It reminded me of these comments:

St Bartholomew's Hospital Chronic Fatigue Services submission on draft NICE guidelines:

Draft text:
6.3.6.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.

SH St Bartholomew's Hospital Chronic Fatigue Services
69 FULL 183 6.3.6.8
"equipment and adaptations (for
example, a wheelchair, blue badge or
stairlift)"
We disagree with this recommendation.
Why should someone who is only
moderately disabled require any such
equipment? Where is the warning about
dependence being encouraged and
expectation of recovery being damaged
by the message that is given in this
intervention? We are in no doubt that it
is a powerful message for a therapist of
any sort to provide such aids. Our view
is that such aids should only be
considered by a multi-disciplinary
therapeutic team as a whole, and
usually in the context of providing a
temporary means for a patient to
ncrease their activity levels. An
example would be providing a wheelchair
for a bed-bound patient as part of
their active rehabilitation programme. In
our opinion, such aids should never be
seen as a permanent solution to
disability in this illness.

NICE:
We have recommended such
equipment only if appropriate, and
as part of an overall management
plan and as an aid to independence.

and

Another quote along these lines:
In reply to (Draft NICE text):
1.3.1.8 For adults and children with moderate or severe symptoms,
provision of equipment and adaptations (for example, a wheelchair,
blue badge or stairlift) to allow individuals to improve their
independence and quality of life should be considered, if
appropriate and as part of an overall management plan.

Barts wrote:
Equipment and aids may hinder
recovery as much as help it, and their
prescription needs to consider both
outcomes. We believe disability aids
can help a patient towards recovery if
their use encourages a widening and
increase in their own activities, on a
temporary basis, as a means of
supporting a rehabilitation
programme. They should rarely if
ever be used for patients with only
moderate disabilities.

i.e. only willing to give a disablility support for a limited period, whether it is an aid or a payment.

Also:

(vii) On Recovery times:

Draft text:
6.3.6.16 When planning a programme of GET the healthcare
professional should:
discuss with the patient ultimate goals with the patient that are
important and relevant to them. This may be, for example a 2 x 15
minutes daily brisk walk to the shop, a return to previous active
hobby such as cycling or gardening, or, if more severely affected,
sitting up in bed to eat a meal.
recognise that it may take weeks, months, or even years to achieve
goals, and it is essential that the therapy
structure takes this pace of progress into account.

SH St Bartholomew's Hospital Chronic Fatigue Services
75 FULL 188 6.3.6.16

These goals should include recovery,
not just exercise and activity goals.
If it takes "years" to achieve goals, then
either the goals are wrong or the
therapy is wrong. What other treatment
in medicine would take years to work?
We suggest "or even years" is deleted.
If a therapy is not helping within a few
months, either the therapy or the
diagnosis or both should be reviewed
and changes considered. We suggest
that this advice is pertinent to all
treatment approaches, not just for GET.

NICE GDG:
The statistics indicate that total
recovery is relatively rare and the
GDG felt that to include recovery as
a goal may lead to disappointment.
As the goals are patient derived
they may be long term. Interim
goals would be developed.

If one of the goals is recovery, and goals shouldn't take years only months, then recovery in months (not years) should be seen as a goal.

 

[Esther12]

Yeah - looking back, it could have been great evidence of the way these views are being applied upon patients... but I don't think there's any way I could get in contact with the patient now.

 

[Dolphin]

Yeah - looking back, it could have been great evidence of the way these views are being applied upon patients... but I don't think there's any way I could get in contact with the patient now.

Yes, understand.

 

[gu3vara]

I was asked to do a rehabilitation program by the insurance, it was a total fiasco. Stopped after a bit more than 2 months, left me way sicker and it took me a couple months to return to baseline after that.

Only good thing is that the rehab experts concluded that I was still unable to work at the end of the program. When the insurance decided to stop paying for it and made me saw an expert rheumy paid to say I had nothing. The insurance haven't paid me in more than a year now, but this file from the the rehab program will certainly help when lawyers will look at this.

Whole lot of sticking crap it is anyway, at least my wife is working... I hope that the truth will win eventually.

Anyway, it was really painful and traumatic for me but I don't regret going to this program, at least they could see how bad I was.

 

[Dolphin]

Best of luck with it, gu3vara.
I know somebody who did a program supervised by a physiotherapist (=physical therapist) who the insurance company commissioned (she was just local and not generally associated with them as far as I know).
He went to the local gym to meet her for over a year. Eventually she said it wasn't working. However, her report wasn't that clear at all - I can't remember the details but know he wasn't happy with it.

 

[alex3619]

In 1987 I applied for workers compensation insurance due to ongoing problems with work. I found a physiotherapy program that was supposed to help - it made me worse over the next year, despite that it was a very slow and steady approach. Sometime along that timeline I saw a rheumatologist who said I just needed to exercise, case closed. He was appointed and paid for by the state workers compensation department. He was also wrong on everything he said, and I mean everything, although it was years before my understanding progressed. For example, he completely misunderstood exclusion criteria for CFS under Holmes definition.

I have not worked full time from that time, although I did some part time work up till maybe 1995. My workers compensation claim was denied, and the muscle pain I had did not start to fade till the early 2000s. Its still there if I try to do too much.

This is an old story. It has been going on for decades. Its a victory for power over people, dogma over knowledge, and injustice over justice.

Bye
Alex