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Advocacy Groups when experiencing chronic pain

  • Santosha
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7 years 9 months ago #13121 by Santosha
Since recently joining, I have been reading everyone's recent posts and today about ketamine in particular. I constantly find myself wondering if half of these specialists really have a clue what they are up to. I realize that whilst we all experience chronic pain, there are also as many reasons why we are in pain. As such there will be different approaches to how we are all treated.

What I find disturbing however is the apparently contradictory information that we all seem to receive and that is just in regard to ketamine treatment. Either that or our doctors seem uninterested in providing us the full story from which we can make an informed decision ourselves after weighing up the potential pros and cons. Rather they tell us what they want us to do and seem to expect us to give them blind trust. The differences with ketamine between length of treatment, treatment frequency, ongoing use of narcotics, being sent home with no medication at all, psychological and anxiety issues arising during ketamine treatment that in a number of cases could have been judiciously avoided through the use of benzodiazepines, at times to me appears close to malpractice.

I read Peters recent posts and relate very much to his encouraging all of us to ask questions, writing them down before we go to our appointments, remembering that the effects of strong pain meds can cloud our ability to remember things said to us, taking someone into the appointment with you, not being rushed into making decisions, reflecting on whether our specialists agenda is actually in the best interests of our well being or just fits their own methodological viewpoint.

I appreciate that there are also a number of doctors out there who are empathic and compassionate towards people experiencing long term pain. My question is how do people new to the experience of pain, new to the merry go round of GPs, specialists, psychologists, psychiatrists, pain medications, antidepressants, let alone insurance companies, actually find the help they really need.

I do like how people using this site can help each other with information as well as emotional encouragement and wish I had come across it years ago.

Personally I look back at the last ten years and wonder how I actually survived it. To be honest there were a number of times when I nearly didn't. As the saying goes, If I knew back then what I know now. Having, i know not been the only person on this at times very confusing and frustrating merry go round of doctors and medications, I wonder how more can be done to help people avoid pitfalls, choose good practitioners, to know your rights and make informed choices.

I personally look back and wish I had had someone to be my advocate through this process. A person who had the experience and background to ask clearer questions in those time when I was seeking help but was in too much pain to think clearly and be a good advocate for myself.

Are there any such advocacy groups or individuals out there ?

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7 years 9 months ago #13122 by Oxytotem
Replied by Oxytotem on topic Advocacy Groups when experiencing chronic pain
I guess it's all trial and error.a really good idea would be to have the chronic pain Australia or similar website posters posted in all of the gp offices next to those government health brochures and such so more people get to know about support groups....personally I kinda just stumbled across this website but have found it so helpful just to know that there are people out there willing to share there experiences.shit I even considered going to NA,even though im not an addict,meetings just to find out some info on what I've been taking and the views of real people,not just doctors and the like,have on things.i really believe that upon commencement of opiate/chronic pain management that people should be presented with the option of being part of a group like this.even if it is just to vent or ask what they may consider to be questions too "silly" or whatever to be asking their GP's..I think this should be something to strive for and maybe someone with a bit better literacy skills and a better grasp on this concept could possibly petition it to the site operators or whoever?
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7 years 9 months ago #13124 by Mary
Hi Santosha,

I can totally understand your frustration with what appears to be a minefield of contradictory information; especially when it comes to Ketamine infusions. I have just had a very quick glance at a literature review that was done back in 2003 and I can see why this is happening. I don't think that the results would be much (if any) different if the same studies were repeated today.

The studies were conducted for a wide variety of conditions that all cause intractable pain. Ketamine had been also administered in a number of different ways. It appears that people differ very widely in their reactions to Ketamine; some people obtained a great deal of relief, some obtained a degree of relief and others obtained no relief. As in all studies, some people quit because of side effects. Other medications were not used as they would have skewed the results.

I suspect (and I will try and find out more) that the use of other drugs in combination with Ketamine has come about so as to try and help people to achieve a better outcome from the actual infusion. The fact that the administration of these drugs varies widely is possibly related to the medications that the patients were taking prior to the infusions.

I am not sure what your profession is because you haven't said, but I don't think that you can say that "in a number of cases could have been judiciously avoided through the use of benzodiazepines, at times to me appears close to malpractice", unless you have a medical degree. Benzodiazepines may have been contraindicated for a variety of reasons in the cases you are referring to. There could have been interactions with other drugs, the patient may have been intolerant etc. We simply cannot run around accusing doctors of malpractice without solid evidence. Even then, this forum is not the place to do it; our organization has its reputation to look after.

Your point about advocacy is excellent. If there was a way that we could develop a course to train people to become advocates for people with chronic pain to be able to assist others it would be wonderful. However, that would cost a lot of money and unfortunately governments never seem to be able to see the easier solutions to complex problems. There would definitely have to be training due to legal requirements in this litigious society we live in nowadays. Chronic Pain Australia is a purely voluntary organization and we don't have the money to undertake a task of that nature. It would need to be in all states too.

Until medical science understands exactly why some people have persistent pain and others with the same problems do not, then we are stuck trying to negotiate an ever increasing minefield. However, there is no "cure" at the moment and the majority of doctors are well meaning and doing their best in an extremely difficult field. Yes, there are some whose manner is less than desired and who don't seem to care much. Maybe they have given up - who knows. One thing I do know is that we have all come across one or more. This is probably because of the number of doctors that we all see, especially in the early stages.

I would love to see people be able to get help in the early stages so that they don't have to do it all on their own. The only negative thing that I can think of regarding that is that in those stages we all think that the "fix" is going to be at the next appointment, so would people actually seek out advocacy groups that early? I don't know. They probably would after a year or two though and that would be a whole lot better than 5-10 years!


Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
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  • grappers
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7 years 9 months ago - 7 years 9 months ago #13126 by grappers
Replied by grappers on topic Advocacy Groups when experiencing chronic pain
I don't know about other States, here in SA there is starting to be a lot of pamphlets being left at Doctors surgeries, Pain Clinics, Psychologists and Psychiatrist offices outlining the conditions of persistent and chronic pain giving quick brief about both, the important part is the back page with a list of websites relating to support for CP and CPA is one of them.

While having these support groups up and running and like ours usually run by volunteers has it's place in the world of CPer's for support and understanding, the biggest let down is the lack of pain management clinics and especially the pain management groups for cognitive therapy where we learn to manage our CP on our own in conjunction with modern science.

The biggest enemy to a CPer is themselves, even after doing courses we tend to push ourselves just that extra bit knowing that we shouldn't, or you get those who go flat out because they feel great for one day only to be laid up for the days to follow and blame everyone else and pain meds for their pain. We as CPer's have to take some responsibility for our lives and realise how and what we do impacts on how much pain each day will bring, you can't blame the medication for not holding for our own stupity.

Until the medical profession has the capability to understand the mechanism of chronic pain we have to play our part, there is no test to tell which medication will work on who and when, there is no test to know if you are intolerant to medications and yet we are quick to blame these same medicos who are here trying to help.
Don't get me wrong there have been some shocking cases where doctors just don't give a damn, or have no idea and stab in the dark and throw what they think will help, or go into the other responses it's all in your head, it's your choice in the end if you stay with a doctor that you are not happy with.

A standard needs to be introduced where once a patient has been diagnosed with chronic pain the step should be a referral to a pain management clinic, for this to happen a lot more funding and research needs to be put in place, so all get the proper treatment rather than having to find out for themselves usually after they have hit rock bottom or attempted suicide. We are not a minority group and yet we are silent, 1 in 5 Australians suffer CP, some 6 million if only we could use that to get the Government to lift their fingers, only then would major policies change.

Had my rant now

Last edit: 7 years 9 months ago by grappers.

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