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5 years 6 months ago - 5 years 6 months ago #14054 by kebsa
kebsa replied the topic: Methadone
livingit, i would not have isues with a pain unit changing meds that a gp had started and for some methadone is an amppropriatte drug, it just seems that DASA automatically becomes involved at the 12 month mark, i do not believe they have the right to intervene a switch a person to the methadone program whie they are still waiting to get into a pain unit- the waiting lists are far too long bcause of the lack of resources- the pain ubit has to inform DASA of what they have prescribed for me as well as i am a long term patient but other than issuing a permit number that allows the pain unit to prescibe for me nothing else changes but these people waiting to get to the pain units have sometimes had meds changed- if they actually examined the patient and took a history this would not be so "big brother ish" but to just override a community gp's assessment and use the methadone program as maintainance while they wait to get to the pain unit- that is tougher to see as being the right thing- of course if they think the gp prescribed inappropriattly it would be more understandable but the situations i have heard off and i admit this has been on today tonight tye programs etc make it seem like the cp patient has just been caught in the system
if a gp is competent to prescribe while waiting to get to the pain unit where does an entity like dasa come off overridng the professional assessment of the patients regular GP

its like my equipment hassles too, disabilitySA equipment program requires an OT assessment and prescription and it used to be that what was prescribed was supplied! but now you have to wait for funding for the OT assessment, they do the assessment and a pencil pusher can overide that prescription based on cost etc even if the therapist says their alternative puts you at risk- if i were that OT, asked to do a prescription , only to have it ignored i would be annoyed, same with a prescribing doctor unless there was a good reason in the patients benefit

they are examples of resource issues really, i think initally the thought was that a person with CP should be seen in a pain unit within 12 months but in this state there really are only 2 multi disciplinary pain units, they are at the 2 major teaching hospitals- there are private pain specialists but to be honest the multi disciplinary clinics are invaluable- at the least the pyschatrists, psychologists, ot, pt, social workers in these units are all specialsits in CP and that initial assessment looking at the person as a whole is invaluable- but the waiting list is dreadful- mind you, last time i went to the pain unit for a pump refil there was a notice saying how many no shows they had had for the month and from memory it was over 400! the note went on to say if all those no shows had rung to cancel or change appointments, the waiting list would be cleared! that was an eye opener!

and lastly as for having to wait in line with the methadone program addicts, that again related to reports about the involvlemen of dasa in prescribing opioids after 12 months in this state and it seems that occasisionally in stead of issuing the authority number to the patients usual gp they issued it to a place called the osmond clinic- this is a wel known clinic that deals with those with people with drug abuse or alcohol dependance issues- but there may have been more to the stories than was made publlic. where i used to live the local pharmacy was liscened to deal with paients on the methadone program and i did see methadone program (not CP patients to my knowledge) getting there daily meds but the pharmacis was very disrete and respectful to the clients- the only reason i picked up on it was due to my professional background- there is a set way that new program clients are dealt with to ensure that the medication is taken immediately , no diverted or saved etc part of that was liqui single doses only in the early days but most people would not really notice anything other than a very attentive pharmacisit!
Last Edit: 5 years 6 months ago by kebsa. Reason: incomplete sentance
The following user(s) said Thank You: Santosha

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5 years 6 months ago #14055 by Santosha
Santosha replied the topic: Methadone
Hi Kebsa,
It is really interesting to hear your experience in SA.
I am in queensland and here i am able to receive a one month script for my methadone, plus 2 repeats. This gives me a full three months of medication. This script has to receive a special type of approval which my GP organises with the support of my pain management specialist.

In regard to pain mnagement programs there is quite a number of hospital based programs in addition to the private run courses. Luckily when i did my first program about eight years ago all i needed was support for the program via an admissions specialist at the hospital and within about a month i had commenced the program. In my case the cost was covered by an insurance company, though i know that in other cases such as entry via the public system, the situation can be very different.

It sure can be tricky getting ones head around all the tions for dealing with pain, disability equip, support services, etc when each state has such variances in available services and ones access to them.


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5 years 6 months ago #14060 by kebsa
kebsa replied the topic: Methadone
it is ineresting how things vary- until my equipment issues i have been ok, i have been going to the same pain unit for close to 20 yrs now and it is a a public hospital but i have used my private health insurance at times such as when i ha my first pump placed bak in 2000, even though it was a public hospital, back then as they were so expensive they would not use the pumps unless you had prvate insurance or workcover etc to pay for it- i think that has changed over tme though. b\ the sad thing is that 20 yrs ago we had the 2 pain units and still the same now- considering what a drain cp is on thecommunity it would actually benefit the community if there were more! i just get annoyed when i see its the red tap and beauracracy that is getting bigger and more expensive rather than patient services. The pain unit manages my scripts with my GP but they have to have that approval number from dasa as well

you are right that it is tricky to get ones head around the various programs from state to state because they differ so much and i guess the first thought is that perhaps they should be run federally- part of me thinks that if we did not hav to deal with both state and federal health departments it would mean more money for patient care but i think that is too simplistic too. Even when Gillard announced the ILS- a tax payer funded program that should ensure that all citizens were effectively insured so that if they become disbaled they get the services and equipment they need - sounds great! i am suspicious that it would just be another level of red tape and beauracacy to deal with, to allow them to tax more but not necessarilly get the money to where its needed

one positive thing recent for us, when it comes to money allocate for our personal care, they have just started a change in the system that means that instead of them having full control over my allocation, eg i am allocated 13,000 per yrs t fund 1 hour personal care a day that they subcontract to a prvate comapany and i have no control over- soon i can hav that money paid into a seperate account and i can negotiate my own deals with the agencies adn have a little more flexibility over it eg perhaps one less shower per week and use the time to help with my housework or grocery shopping etc - lots of record keeping though to make sure the money is only used for what it is intended- i could not use it to pay a bill or buy equipment though- but this started from complaints about the lack of flexibility in care packages and the negative impact on peoples life- for me for instance- i would prefer to have a small amount as an emergency stash so that times like now when i am not able to do my own meal prep etc as well as usally i could have short term extra help- ms plays up in the hot weather so it would be worthwhile- in theory it should cut the admin costs too- i want to see jsut how much paperwork is involved before i agree though as if it is too onerous it would be a negative eg if i ended up with a major ms flare and was suck in hospital i would not wantto fall behind in "book keeping"

my late father said that australia only had state and federal government because of the expanse of the country and the fact that it would take a couple of days to get from adelaide to melbourne etc. so he felt with modern travel and internet conferencing etc we did not really need the state government! he felt they just liked to blame each other for short comings etc- never really sure about that but i kinda see his point

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5 years 6 months ago #14065 by Oxytotem
Oxytotem replied the topic: Methadone
Hey thanks a lot santosha, and I actually really appreciate you taking the time to write such a concise and in depth reply, it all totally made sense and I'm glad for every word you wrote :)

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5 years 6 months ago #14069 by Aetherone
Aetherone replied the topic: Methadone

Santosha wrote: because once on methadone you would find yourself on it for a long time, and if you later feel that it doesn't suit you, getting off it would not be easy.

This is entirely the polar opposite to my experience with methadone. We experimented with it, and when it proved less than ideal, transitioned to different narcotic analgesics.

Santosha wrote: The other thing is that methadone will not necessarily relieve the ongoing pain of a chronic pain sufferer.
If it doesn't then what. What if you still have breakthrough pain. Ask what they will give you for breakthrough pain.

All of these questions are equally valid for any pain controlling medication. We all have minor variations in our biochemistry that makes finding the "best" medication an adventure at the best of times.

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5 years 6 months ago #14077 by Santosha
Santosha replied the topic: Methadone
Thanks for the reply, Aetherone.
Unfortunately I am not sure how your post adds to the discussion, unless you give a bit more informartion about your experiences. I would truly appreciate it if you could say a bit more. As you can probably tell I have not been fortunate to have had such a happy experience as yours.

In regards to the first point that you raise.
Had you been on other narcotic based medication prior to the trial of methadone.
What form did the methadone come in for you, ie tablet, liquid, other.
With respect, may i ask is your background one of chronic pain or of recreational drug use.
How long was your trial of the methadone
What dosage where you on
MOST IMPORTANTLY - how did you transition from the methadone, it implies you were taking another med simultaneously.
What medication did you then switch on to after the methadone
Was your treating physician at the time a GP, Psychiatrist, Specialist in another field.

I appreciate that this is a lot of questions, but any information you could provide may help me, or others to better understand some of the available options.

In my case, I was treated in hospital by a Psychiatrist with an interest in Pain Management.
As i mentioned in a previous post, I admitted myself to hospital, with the intent to reduce my then high daily doses of morphine. My doctor showed enthusiasm for this idea, however neglected to mention at any time that HIS intention was to put me onto methadone, whether i wanted to be on it or not. It was not going to be a trial in his mind but a permanent solution. My expression of dismay was irrelevant, he was not going to let me switch off of it.

My issue was complicated by the fact that I had been in hospital for six weeks, he had already moved me on to the medication, and it took me months to find another specialist, a number of discussions over many appointments, before the new guy would agree to take over responsibility for my use of methadone, but only if my GP took on the job of organising the scripts.

All of this time I was still experiencing daily pain, fatigue, constipation, episodes of severe breakthrough pain lasting for days, as well as trying to be my own Advocate for getting off the methadone. Yes my new specialist supported my not being on the methadone, but words and effective action are not the same thing.

Part of the issue is that my specialist tells me that it is too dangerous to take any other pain medication whilst I am using methadone. I am also told that because of the nature of the methadone, I will need to get off it, be off it for a month, before he will consider giving me any other medication. That means i will need to be medication free for that month, plus get off the physeptone myself at home, with no support during the process and also be without any medication.

I feel stuck in a deep dark hole, with no signs of light.
I am left to work the process out for myself.

Yes i need to swith doctors.
Find someone who will support me through this process.
But who?
I do not seem to be having your good fortune with doctors.

In regards to the other of my comments that you picked up on, that of methadone not necessarily relieving ones ongoing piain.
I agree with you, as i think everyone who has trialed a medication for pain management, that we will all have different responses.
My point, which perhaps i didn't explain clearly enough is that my experience with methadone was totally different from any other pain med I have ever used.

Firstly the doctor who put me on the methadone and the following specialist who took over, both refused to put me on a higher dose even though i was still in considerable pain.
Further they were not prepared to give me any other medication to help.
Additionally I was expected to just live with it, whenever i had episodes of breakthrough pain. My breakthrough pain is not short lived. It is like having a severe migraine, whilst having a sharp object poked through my brain. It last for days. I am totally non functional at these times. I am desparate, suicidal, cant move, dont have the energy to bathe, eat or be a husband to my wife or a father to my children.

Prior to the methadone, if i was in a situation like this, i was given additional medication for relief and support.
Alternately if a medication i had been on for some time was no longer working effectively, or i was showing signs of tolerance, we would change to a different medication and trial it.

Why i say in my earlier post, that if methadone is suggested, one should be extra cautious and ask more questions, is based on my experience.
What you point out about methadone being like other medications, is simply not true in my case.

There has been no access to breakthrough pain medication.
There has been no support route offered to my getting of the methadone.

If i sound a bit upset, it is because i am.
Your response just says that we are all different and trialing methadone is just like trialling any other med.
If that was the purpose of your responding well okay, i guess.
My post was intend to suggest caution with methadone as my experience has been very different from anything before it.

For the sake of others experiencing CP, I hope that your experience is more the norm than mine.
For me methadone has been a trap, leaving me worse of with pain management than ever before.

Your additional thoughts would be appreciated.

Ps i am happy to receive supporting ideas from any who may read this.

As always
Much thanks.


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