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Old 21-03-2008, 12:04 PM   #1
Jon Newman
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Default Starting a chronic pain support group

So if a person were to start up a chronic pain support group, are there any dos or do nots to be aware of?

Here is the wiki entry on support groups
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Old 21-03-2008, 12:46 PM   #2
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Online support group or face to face?
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Old 21-03-2008, 01:01 PM   #3
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I was thinking face to face. Do you think there is a big difference in terms of the "rules" that guide the group?
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Old 21-03-2008, 02:08 PM   #4
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Jon,
Online groups are always a mess. You can't "beat" patient with science since support brings many beliefs.
http://brain.hastypastry.net/forums/
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Old 21-03-2008, 08:08 PM   #5
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From what I have seen with support groups, there seems to be these factors:

Risk of a slow descent into a single focus on their symptoms where empathy turns into sympathy; and an isolation from 'outsiders' who are painfree and normal. Apart from that, if there is a good facilitator within the group who steers thoughts away from self-immolation, they are a good idea.
I can see you as such a facilitator, Jon.

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Old 21-03-2008, 08:34 PM   #6
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Thanks Nari. I'm concerned about a potential conflict of interest by tying the support group to my professional work.

Has anyone else tried running a support group as a PT? How do you handle patients looking for treatment advice? How do you handle other participants who offer treatment advice or ideas that seems unsound to you?
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Old 22-03-2008, 01:20 AM   #7
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Quote:
Has anyone else tried running a support group as a PT?
I'm considering a walking group, but have done nothing outside of the treatment environment yet.
Quote:
How do you handle patients looking for treatment advice?
I just tell them the truth as I know it.
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How do you handle other participants who offer treatment advice or ideas that seems unsound to you?
I refer back to the truth, and repeat the self-management mantra. These patients have to be reminded again and again that there is unlikely to be a cure; a 30% reduction in pain with any intervention should be considered wonderful. Then I remind myself that many different sorts of treatments can have neuromodulating effects which may provide some degree of comfort for the chronic pain patient. Provided the risk of harm is negligible and explained properly, this may be preferable to taking more drugs to treat the same pain. On the other hand I hate to see my chronic pain patients go to some practitioner who claims to have 'the cure' who then proceeds to milk great sums of money from the poor person. I hope that I'm able to educate my patients enough so that they can avoid this trap.
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Old 22-03-2008, 03:49 AM   #8
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Some more thoughts:

An introductory session where aims and purposes of the group are discussed and ratified; it sounds formal but from the start it is good to 'know' your group, and they 'know' you.

Expectations of treatment/managment can be identified and the patients' stories heard. What I found (I didn't do it for long, actually) was that almost all PPPs were looking for something different other than the usual not-so-successful regimes many have experienced.

Walking is a good start - even if it is only 200m that some can manage. Those who feel bothered by the lack of walking stamina can be encouraged to do something else of their choosing.

Recommendations of other approaches and/or methods can be quite acceptable only if they sit well with what your plan is. The plan could be flexible enough so that after several sessions, the group will run itself. This tends to promote self-care and less passivity.

The only real challenge that I've seen are those who give up their goals quickly and tend to hold the floor in conversation, but that is difficult in any group, painfree or not. Sometimes, ironically, an invasive member of the group can be beneficial to group dynamics; it brings the others closer in thought.

Just some ideas to play with...


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Old 22-03-2008, 03:37 PM   #9
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Hi Jon,

You might want to check out your legal liability in doing this, I am finding there are more and more issues in this area for us as PT. We don't have complete autonomy in Wisconsin as far as the practice act and information you may discuss with the group is going to be construed from the fact you are a representing medical authority as a PT.
Aside from this, a group for chronic pain needs to focus on how to manage and move forward in life inspite of their condition. Many of these groups get lost in the empathy and sympathy, poor me, and keep perpetuating the victim story. They need to find empowerment and if you can motivate that along with the physical guidance, it will be positive and rewarding for all.

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Old 22-03-2008, 03:47 PM   #10
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Much of the therapy I provide in my hospital based chronic pain program is done in groups. Many of my patients have become quite socially isolated over the course of their illness and, with few exceptions, they find a good deal of comfort in discovering they are not alone.

Last week I toured a chronic pain treatment facility in a larger city. Many of their group based programs are run by psychologists. As Karie points out, they may be better backed (legally) to facilitate a support group.

Jon, are we to understand from all of this that you are considering starting a support group? Could you give us a little more background? Is it part of a larger initiative?
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Old 22-03-2008, 08:26 PM   #11
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Default pain groups

http://www.painassociation.com/

Hi i am involved in this group .....Phil who runs groups the length of the country is teaching me how to interact with groups --its a totally different skill than 1:1 and very challenging.However I find it very benefical and also empowering for some individuals as their ideas and behaviours when the group runs well are challenged. We integrate neuro stuff with basic 'common sense' ie rare sense in some cases --metaphors of using half filled cups to symbolise how 'energy' is drained when a persons life has to deal with chronic stressors.
I have tried to set up a group recently based on this model and the referral rate from the Drs is non existent so it will probably stop!
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Old 22-03-2008, 08:36 PM   #12
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Ian, maybe you should send this paper around to the doctors, with a note saying that your groups will assuage the situation a bit or a lot.

Information about neurobiology will certainly help with the biogenic/psychogenic delusions, but can't do much for the sociogenic contexts - those require political will. Still, two out of three isn't bad.
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Old 22-03-2008, 08:38 PM   #13
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Thanks Ian,

The FAQ section was very helpful. I'm assuming the referrals you are talking about are referrals to the program (versus to your practice.) That's too bad.

Hi Eric,

I'm considering it but I've got strong reservations.
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Old 22-03-2008, 08:44 PM   #14
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Quote:
I'm considering it but I've got strong reservations.
Sensible.

Jon is there a chronic pain program of any sort in your area already? I'm really curious as to your motivations. I'm currently in the process of program development right now and am eager to hear other's stories to help me through the process.
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Old 22-03-2008, 08:58 PM   #15
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Good luck Eric. The motivation for doing it (for me) would be to help create an environment free from direct business interests in which to communicate updated information about pain (it's mechanisms, relief, etc.)

I think there might be a demand for something like that. As far as I know there is no chronic pain group but there are other groups for which pain is an issue (e.g. arthritis support group).
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Old 22-03-2008, 11:41 PM   #16
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You've got a lot of courage then. If you are the only one offering something like this I think it would be easy to get overwhelmed quickly. Without established hospital and community based programs already in place you'll have to clearly define what you can and can not provide and to whom. My problem now is that I work from a hospital based interdisciplinary program without any community programs to refer to, making discharge a difficult issue. We serve a region of about 150,000 people (rough estimate), we have a wait list about 1200 people long and get around 5 new referrals a day. Mind you the program has its roots in interventional care provided by anaesthetists and the interdisciplinary aspect is brand new.

I offer an educational series, pool sessions, gym based exercise sessions, pedometer walking program, and individual rehabilitation or hands-on sessions but only when appropriate. I find unstructured pool sessions the best for allowing patients the freedom to ideomote and lend each other peer support. I've yet to see anyone who isn't happy in the water and I often joke of retraining all of them for careers as professional snorkellers.

I'm still not clear on what you specifically have in mind, but whatever you do keep the the following observations handy: Most chronic pain patients are only able to attend things scheduled in the middle of the day and parking is a huge issue, you have to have lots of close parking.
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Old 23-03-2008, 01:22 AM   #17
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Jon, any chance of someone coming in with you on this? Could you suss out a friendly psychologist?

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Old 23-03-2008, 01:26 AM   #18
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I could ask around. A lot of folks aren't interested in the "for free" part of things.
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Old 23-03-2008, 02:04 PM   #19
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Hi Nari,
No matter how good the psychologist, I found in my occ rehab work (as a rehab counsellor) that pain centre psychologists were usually the main source of dissatisfaction. Group members fiercely resented the suggestion that pain was in any way affected by their behaviours or goals. Many who were considered a successful outcome in the programme, reverted to their previous thoughts/behaviurs when it was finished. The harder CBT was pushed, the worse the response.

Self-management of pain is, of course, what we are trying to help them achieve. The psychologist who runs such a group needs to be able to educate but have a softly-softly approach to changing behaviour. This means guiding participants into the habit of using the information given to think up their own solutions or making suggestions for other people to try.

What I am trying to say, is to try to solve constructive problem-solving by the participants themselves. For this reason, I would form a group of people with similar overall goals so that the suggestions made have a good chance of being relevant to other group members.

Another good facilitator would be someone who has, with help or independently, worked out how to manage their pain to live a life of maximal function and enjoyment.

Just to finish, this is the end of a poem long cherished by my mother
----------"and each must make, ere life has flown
a stumbling block or a stepping stone"

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Old 23-03-2008, 02:31 PM   #20
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Good advice Jane. I'm interested in this

Quote:
Another good facilitator would be someone who has, with help or independently, worked out how to manage their pain to live a life of maximal function and enjoyment.
One concern I'd have is the unintentional promotion of "the way" (treatment technique, nutritional supplement, etc.) by such a facilitator. By unintentional, I mean that the facilitator themselves must have done something that was helpful and the participants will have the understandable desire to want to try those same things.

I'm reminded of Barrett's essay, "The Stimulation of Eccentricity" (some mention of it can be found here) as I write this response.

My comments aside, it was a pretty thread.
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Old 23-03-2008, 03:29 PM   #21
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this is too good not to share...thank you Mom for me
Bob
" A Bag Of Tools"

Isn’t it strange
That princes and kings,
And clowns that caper
In sawdust rings,
And common people
Like you and me
Are builders for eternity?

Each is given a bag of tools,
A shapeless mass,
A book of rules;
And each must make—
Ere life is flown—
A stumbling block
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Old 23-03-2008, 03:32 PM   #22
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Bob-
In bringing MFR concepts to the group, where do you recommend the "There's No Such Thing As Disease" lecture go?
First one, or wait until later?
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Old 23-03-2008, 03:41 PM   #23
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Where is that coming from Jason? I didn't post anything regarding bringing anything to The Group...continue picking fights with Rod you'll get what you seem to need.
The meek shall inherit the earth.
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Old 23-03-2008, 04:07 PM   #24
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Quote:
The meek shall inherit the earth.
This could easily be a self-fulling prophecy if enough people really believed that there was no such thing as disease. Assuming by meek you mean something along the lines of cockroaches, ants or bacteria.
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Old 23-03-2008, 04:23 PM   #25
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Quote:
Quote:
Quote:
The meek shall inherit the earth.
This could easily be a self-fulling prophecy if enough people really believed that there was no such thing as disease. Assuming by meek you mean something along the lines of cockroaches, ants or bacteria.
Or if enough people really do suppose that there is no point in learning to think rigorously enough to make one's way out of a wet conceptual paper bag.
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Old 23-03-2008, 04:29 PM   #26
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The word "meek" means to be gentle, humble or considerate. It is the opposite of opinionated and unapologetic. Those who are willing to share and sacrifice in behalf of others are meek. Those who seek for my way or highway and will use any means to trample and crush others are the opposite.
Meekness does not mean weakness! It does not mean one must cower or retreat from his principles. It does not involve the surrender of ones rights. Meek men and women show firm resolve, courage, conviction and strength. The phrase "inherit the earth" is a figure of speech which denotes things realized when the one enjoys the good things of life which some often overlook in their pursuit of whatever by being opionionated and unapologetic. Stop and smell the roses while you are trampling thru them. I hear it can be calmingBob
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Old 23-03-2008, 04:35 PM   #27
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Quote:
The word "meek" means to be gentle, humble or considerate. It is the opposite of opinionated and unapologetic. Those who are willing to share and sacrifice in behalf of others are meek. Those who seek for my way or highway and will use any means to trample and crush others are the opposite.
Meekness does not mean weakness! It does not mean one must cower or retreat from his principles. It does not involve the surrender of ones rights. Meek men and women show firm resolve, courage, conviction and strength. The phrase "inherit the earth" is a figure of speech which denotes things realized when the one enjoys the good things of life which some often overlook in their pursuit of whatever by being opionionated and unapologetic. Stop and smell the roses while you are trampling thru them. I hear it can be calmingBob
Is this some sort statement of moral outrage on your part bob? Are you saying that moral superiority trumps good hardwon reasoning power?
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Old 23-03-2008, 04:40 PM   #28
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I defined meek so Jon can understand what I posted, Diane. He seemed to confuse meek with cockroaches and bacteria. I forgot ants..oops.
Bob
What competition did you win on reasoning power?
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Old 23-03-2008, 04:52 PM   #29
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I agree with Jon's idea of meek.
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“If you make people think they're thinking, they'll love you, but if you really make them think, they'll hate you." ~Don Marquis

"In times of change, learners inherit the earth, while the learned find themselves beautifully equipped to deal with a world that no longer exists" ~Roland Barth

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Old 23-03-2008, 05:02 PM   #30
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you didn't answer my question Diane...What competition did you win on reasoning power?

Also, I could use the wiki definition fo meek inheriting the earth...that seems to be the gold standard here. I guess that is only when it fits the need.
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Old 23-03-2008, 05:04 PM   #31
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Quote:
you didn't answer my question Diane...What competition did you win on reasoning power?
It's an impertinent question bob. Not very "meek" of you.
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"Rene Descartes was very very smart, but as it turned out, he was wrong." ~Lorimer Moseley

“Comment is free, but the facts are sacred.” ~Charles Prestwich Scott, nephew of founder and editor (1872-1929) of The Guardian , in a 1921 Centenary editorial

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Old 23-03-2008, 05:08 PM   #32
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Quote:
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Are you saying that moral superiority trumps good hardwon reasoning power?
I answered your question, I was just wondering what your statement meant. Its a principal thing not a morally superior issue.
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Old 23-03-2008, 05:10 PM   #33
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I appreciate the clarification Bob but you do appreciate that depending on what aspects of unreality one adopts (such as the disease bit (which I agree is off topic)) the consequences would be that there would be no people left, meek (however defined) or otherwise.
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Old 23-03-2008, 05:20 PM   #34
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"Today I think the Peeps shall inherit the earth"LOL funny....some facts...
The Just Born assembly line in Bethlehem, Pennsylvania, pro- duces 1.2 billion Peeps a year, enough to circle the globe twice. downloadable PDF >>
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Old 23-03-2008, 05:55 PM   #35
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Bob-
I don't pick fights - I didn't make the "disease..." line up, it's JFB's. If it bothers you perhaps you should take it up with him.
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Old 23-03-2008, 06:36 PM   #36
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I'm not sure of his adherents or what is said in classes but the "there is no disease" bit has been dropped from the official promotional brochure I get in the mail (for the second year in a row now).

Bob, as long as we're on the topic, what's your take? Has this promotional statement or the ideas that generated it officially been abandoned?
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Old 23-03-2008, 06:49 PM   #37
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Actually, maybe I can tie this into this thread. Suppose we have a support group member promoting the point of view that there is no such thing as disease. How would such a situation be handled?
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Old 23-03-2008, 06:54 PM   #38
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Don't know Jon. I tried to explain my take on the disease issue and was blasted in another thread. I have no input in the brochures and I haven't received one this year. I in no way am a policy maker. I still believe that there is something going on which is above perception just based on the experiences and things I have seen. Please you all...in no way is this a scientific study , statement or understanding of what the ENTIRE mechanism is at this point. It is just my experience which of course is colored by my beliefs, upbringing, social status and shoe size 13EE by the way.
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Old 23-03-2008, 06:57 PM   #39
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Actually, maybe I can tie this into this thread. Suppose we have a support group member promoting the point of view that there is no such thing as disease. How would such a situation be handled?

I assume you would laugh him out of the group , tar and feathers could be an option, belittle him in to submission or What do you propose?
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Old 23-03-2008, 07:01 PM   #40
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Nice.
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Old 23-03-2008, 07:14 PM   #41
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Belittle?
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Old 23-03-2008, 08:10 PM   #42
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To return to the thread...

Jane, that is an interesting thought, about the attitude towards psychs in the occ-rehab program. At the pain clinic here, the psychs run one course, with a bit of input from other HPs, and the longer course has equal time from all HPs, with physio dominating. The psychs' course was very well received; and sometimes people cancelled out of the long three week course because they didn't need it anymore.

I agree with the idea of another person present who has achieved their goals; at the introductory session at the pain clinic, there was usually someone there to talk to the new group who had successfully 'completed' a previous course.

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Old 24-03-2008, 12:58 PM   #43
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Hi Nari,
It sounds as if you have an good balance there. Also, if people are opting out of the longer course because they don't need it any more, that is also a good sign that they have taken up the responsibility of their own management.

This probably only makes sense to Aussies, but psychologists can be like sheepdogs.
The kelpie runs around barking and trying to keep them all together, heading in the right direction. The Collie slips in behind the mob and simply by its presence, nudges individual sheep one way or another. A good pain programme needs both varieties of psych!

Jane
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