Saturday, 26 February 2011

SA Gov. Hates Pain Sufferers

Image by Gabriel Manga
The organisation, Dignity for Chronic Pain Sufferers needs your help. Please go to their website and sign their partition.


Read on.

Painkiller Regulations Leave Some In Agony
Elisa Black
February 2011

DOCTORS can't tell her what is wrong because there's no name for the disease she has.

For the past 20 years Trish Betros has tried to live while her bones slowly disintegrate.

She has endured more than 60 operations, none of which have offered a cure, but all were done in an attempt to keep her joints mobile, to keep her on her feet.

She has had two knee replacements. And then had to have them replaced when her body turned the tissue behind them to mush.

Bony spurs in her shoulders mean she can't lift her arms high enough to shrug on a jumper or hang out the washing. There has been an amputation. But more than anything, there is the pain. Unrelenting, it moves from a dull ache to a stab, through her body every minute of every day.

It destroyed her career as a doctor, forced her two sons to grow up quickly as they helped to care for her, put untold strain on her marriage.

And Trish says the only thing that helps her pain is about to be taken away. First prescribed strong opioid medication in 2003 by pain specialist Dr Ian Buttfield, Trish was able to regain much of her former life.

She returned to uni, took up sport, lived her life. But in 2007, the regulation of prescriptions for these types of drugs was transferred from the SA Health Commission to the Drugs of Dependence Unit within Drug and Alcohol Services SA.

Dr Buttfield, foundation chairman of the International Association of Pain and Chemical Dependency, said all drug use, whether in pursuit of quality of life through pain relief or for drug abuse, was being treated the same by DASSA.

"When you put the control in the hands of drug and alcohol authorities, they are going to treat everyone like drug and alcohol addicts, none of them know anything about the management of pain," he said.

And a recent review by DASSA means Trish's medication will be cut by about 60 per cent, even though a past decision to reduce her medication had already left her virtually housebound.

DASSA clinical director Dr Robert Ali has defended the current system.

"Around 7500 people in South Australia are prescribed opiates for the treatment of pain in any 12-month period and in most cases no deviation from the schedule requested by the doctor is made," he said.

"As soon as you are receiving opiates on a daily basis for weeks to months there are changes that are occurring in your brain chemistry and physical dependence is a by-product.

"Not everyone goes on to have an addiction but what we have, which is unique in this state is a close association whereby people who develop an addiction are able to be treated."

It is this association that Trish's husband, Greg Betros, is seeking to fight.

The chairman of Dignity for Chronic Pain Sufferers will head to court on February 25 to seek leave for a judicial review into the decision against his wife.

Mr Betros said he hoped a review would pave the way for an overhaul of the system and would benefit the more than 100 members of the group.

"You get to the point where these people say we're going to be better off dead than living with this pain," he said.

"My wife's world is literally her bedroom. We just want these people to live their lives with dignity."

And this from 2009

Agony of The Chronically Ill 'Ignored'
April 2009

SOUTH Australians suffering chronic pain are being forced interstate to obtain adequate doses of narcotics because of changes to government policy.

Some are sourcing drugs such as morphine and pethidine on the streets because authorities will not prescribe enough to relieve their pain.

The drastic scenarios have been revealed as a group of almost 100 people suffering severe pain, known as Dignity For Chronic Pain Sufferers, continues its campaign to have government policy reversed.

The group is lobbying Opposition and independent MPs to hold a parliamentary inquiry into the policy change, which has impacted up to 500 people.

Dignity For Pain Sufferers chairman Greg Betros said the situation had deteriorated considerably over the past few months while calls for help had been ignored.

Mr Betros met Mental Health and Substance Abuse Minister Jane Lomax-Smith in December last year and says he was assured the situation would be addressed.

"Nothing has happened since, despite assurances from bureaucrats that people are receiving their appropriate pain relief doses, but this is simply not the case," he said.

"We are now in the situation whereby people are either obtaining the relief they need interstate or sourcing it on the streets in Adelaide because they have no other option to continue to function."

As it now stands, a person suffering chronic pain can only be prescribed narcotic medication for a period of two months before the prescribing doctor must apply to the Drugs of Dependence Unit within Drug and Alcohol Services SA for a permit to continue prescribing.

Until 18 months ago, the regulating authority was located in the SA Health Commission, under Health Minister John Hill. The system appeared to be working well, balancing the need for pain relief for sufferers against the potential for drug abuse. However, in late 2007 the government decided to transfer the DDU to DASSA, which is under Dr Lomax-Smith's control.

The pain sufferers now argue that regulators with no experience in pain management are running the system in a manner dedicated to curbing drug addiction - to the detriment of patients with unrelated health issues.

"They say pain patients are now being controlled with mechanisms suitable for drug addicts - including sending pain patients to drug addiction centre Waranilla at Norwood - thus denying them their right to seek the doctor of their choice for pain management," Mr Betros said.

"They argue such treatment is in breach of international treaties on human rights. There is no right of appeal against the decisions. As a direct result of the changes, it has become very difficult for those in need of pain medication to obtain adequate relief. At present, the bureaucrats have assigned a notional maximum dose, while current research and clinical evidence demonstrates the dose to be prescribed is the one that relieves the pain.

"The result of the restrictions means there are a number of severely ill patients who are unable to obtain pain relief, even though they are given standard doses."

Dignity For Chronic Pain Sufferers secretary George Seabrook, whose wife Judy is one of those now receiving insufficient pain relief, said dozens of people were suffering.

"Since the policy has changed many sufferers are now unable to work, care for themselves and their families, and are in constant pain," he said. "Things were working perfectly well before the policy change was made for no apparent reason."

DASSA director Dr Robert Ali disputed the claims the shift in policy had resulted in pain patients receiving a lesser level of individual care.

"The realignment of the Drugs of Dependence branch to where it is located has not influenced clinical management," he said.

He said moving the pain patients to DASSA was "not anything other than a review and an attempt to ensure these patients received appropriate treatment in keeping with their interests and based upon best available evidence".

Dr Ali said he was aware there were people who were unhappy at the change to their circumstances and "had found it distressing they were not receiving the same approach they previously received".

"I also understand it is very difficult to have that distance and objectivity about what is in people's best interests when they feel the previous treatment was working," he said.

Dr Ali said he was confident any changes to a patient's medication dose was being made in their best interests.

The SA government is a disgrace. And Ex. Mental Health and Substance Abuse Minister Jane Lomax-Smith should be made to publicly apologise to the people whose lives she has wrecked. Her decision to move chronic pain patients to under the umbrella of the Drug and Alcohol Services was wrong and no amount of spin will change that. Her clumsy attempts to justify her decision has simply tarnished her reputation even more. 

Mental Health and Substance Abuse Minister Jane Lomax-Smith said chronic pain sufferers’ “issues have been referred to Drug and Alcohol Services SA because experts should decide on medication regimes, not politicians”.
--Former Mental Health and Substance Abuse Minister, Jane Lomax-Smith

Thanks Jane. Who would have ever thought that politicians would override experts and interfere with “medication regimes” or drug related issues? It’s great to see though, that Jane makes it clear where she stands on social justice issues in politics.

Jane has always been a strong advocate for social justice and sustainable development and believes that these policies are important personal principles, not just about politics.

It might surprise you to know that Jane Lomax-Smith was a doctor when she made the decision to breach the 1961 Single Convention on Narcotic Drugs.

Recognizing that the medical use of narcotic drugs continues to be indispensable for the relief of pain and suffering and that adequate provision must be made to ensure the availability of narcotic drugs for such purposes

Now Jane is the interim Director of the Royal Institution of Australia. And here’s the irony. According to Wikipedia, The Royal Institution of Australia is a not-for-profit government-supported organisation to support public engagement with science.

As for DASSA director Dr Robert Ali, he has no excuse. Dr. Ali has a history of supporting evidence based policies including controversial issues ilke prescription heroin for long term addicts. He also supports the AFL’s drug policy and cautions against naltrexone implants. All good causes involving pragmatic, evidence based outcomes. 

He said moving the pain patients to DASSA was "not anything other than a review and an attempt to ensure these patients received appropriate treatment in keeping with their interests and based upon best available evidence".

Simply shrugging off the real suffering of chronic pain patients because their new treatment is ‘based upon best available evidence’ is unbecoming of Dr. Ali. He knows that every person has unique needs and suggesting that the risk of opioid dependance is more important than quelling unbearable pain, is wrong on so many levels. Maybe he is just trying to defend his position as DASSA director or the reputation of Drug and Alcohol Services SA? Either way Dr. Ali’s reasoning overlooks one vital point. The previous treatment was working and now’s it’s not. Saying that the new procedures are ‘in their best interests’ is just condescending and ignorant to their suffering. 

I also understand it is very difficult to have that distance and objectivity about what is in people's best interests when they feel the previous treatment was working
--DASSA director Dr Robert Ali

At the core of the issue is that DASSA’s doctors specialise in addiction and have different guidelines that focus on drug abuse. Technically, once a pain patient admits they suffer withdrawals when their medication is reduced, they are classified as addicts aka junkies. This means that the only opiates allowed to be prescribed under DASSA guidelines are methadone and buprenorphine. Both drugs are for treating heroin addiction and not particularly good for pain relief.

As soon as you are receiving opiates on a daily basis for weeks to months there are changes that are occurring in your brain chemistry and physical dependence is a by-product. Not everyone goes on to have an addiction but what we have, which is unique in this state is a close association whereby people who develop an addiction are able to be treated
--DASSA director Dr Robert Ali

Considering that chronic pain can be so deliberating and life changing, the risk of becoming drug dependant is a small price to pay. Also, the physical condition of those who need powerful opioid analgesics, is often deteriorating or even terminal. Being addicted to the drugs that allow them some quality of life is not going to greatly affect their future. Where’s the justification for a decision that confines people to bed when previously, with adequate medication, they were mobile, productive and able to participate in normal family events. Drug dependancy might be serious but tens of millions of people live with it everyday. The difference is that they don’t usually suffer agonising pain.

The real complaint here is that limits have been placed on dosage levels. What dose can be prescribed for opioid based pain medication is now restricted to some arbitrary figure, regardless of the patients pain levels. Interesting, there is no such limit on methadone to treat addiction. I have experienced this first hand - my doctor once told me that I could not increase my morphine dose but if I was on methadone, he could prescribe whatever I wanted.

Regardless of the arguments, morphine and other opioids have been cited by The World Health Organisation as essential in the treatment of severe pain. What dose is prescribed is irrelevant except that it treats that pain. In most situations, dosage is carefully monitored and controlled but to think that someone determines an upper limit for all situations, including those extreme but isolated cases, is just ridiculous. 

Once again, drug hysteria has reared it’s ugly head and the fallout this time are those who suffer chronic pain. With the International Narcotics Control Board (INCB) currently under attack for recklessly restricting pain medication to hundreds of millions of people worldwide and their attempts to stop high doses of opiates for pain relief, it seems ironic that South Australia is so closely following suit. The argument from DASSA director, Dr. Robert Ali - reducing the risk of addiction is more important than providing relief for the chronic suffering of pain patients - is typical of the blanket approach that SA has implemented under the hysterical Rann government. And the excuse that moving pain management to under the control of DASSA is important in case a chronic pain sufferer becomes drug dependant, is ludicrous. I’m sure drug dependancy is the last thing on someone’s mind when suicide becomes a daily consideration for those in agonising pain. Then again, for bureaucrats, politicians and government appointed researchers, chronic pain is just a series of words on a page but being labelled “Soft on Drugs" is a potential loss of employment or worse, voters. Now we know which is more important!

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Gledwood said...

i think the government should just fuck off. i didn't read to the end of that to be frank it pissed me off too much

Gledwood said...

fucking drug dependence unit for chronic pain who the fucking hell do they think they are those cunts?

Anonymous said...

yeah man, i can't sell oxy anyomore since i was changed to bruphenorphine.

Pain Refugee said...

At the moment my wife is under reviews again. At the moment she is writhing in agony on the floor, having had to reduce her medication level by 25% already.

They want her to drop her dose to 1/3rd of what she is on right now, which would kill her outright, and they don;t believe that is possible, as they know nothing about pain medicine. They have almost killed her several times already, and she was FINALLY getting better again.

They now also have an official "one size fits" policy for Oxycontin now too (after watching "A Current Affair" I'd wager), which essentially says you only get 40mg 2x a day, no matter what condition you have...even if you are dying of starvation due to not being able to live without more medication.

Those people who cannot cut down their pain med level any lower without a lot of horrible REAL harm, due to very REAL pain that all of their doctors say they are really in...they do not get an exemption. Instead are sent to a detox facility and treated like addicts. Many are placed on methadone treatments, and methadone is a horrible substance. It made my wife's hair fall out and it caused her terrible pain, far worse that the conditions that she has...which include central nerve sensitization (from their lack of treating her with enough medication).

These people running this system are despised by doctors all over the country. They are egotistical vile animals and have no science, no compassion and just a knee jerk nuttiness driving them on a "pogram" to remove pain meds from all people.

We are to sick to move anywhere AGAIN just to get pain meds. We are finally buying a home after years of being homeless from all this horror, and now we will probably need to pack up the car and flee to NSW just to keep my wife alive. She can't breath city air at all anymore. We need a safe place in the country, and we bought one...but now we will lose everything to these nutters.

Anonymous said...

I'm a chronic pain person and just read this via a link from Chronic Pain Australia- quite frankly I'm gobsmacked. What next deny diabetics insulin. I'm glad I live in Vic. Did have one interesting example of the same attitude whilst holidaying in QLD last year. Treated like a junkie. Finally went to Townsville Hospital and after my suggestion to ring my GP she did ring my local chemist, I couldn't believe it. I'm on Norspan patches 40 mg daily but needed some extra stuff so I could travel. Yes, we get treated by some as lepers. I've done it all with pain clinics etc- even they are like hen's teeth. Hope they get the chronic pain oneday- that's all I can add. It's no dam fun and the irony for me is I reckon my FMS was really sent into overload when I had a knee op that went very wrong in Adelaide. Wakefield hospital and a Dr Rory Montgomery. His partner Richard Clarnett in denial- don't go near either. Medical profession has a lot to answer for sometimes.

Anonymous said...

I hope you're not being serious here! It's people like this, who take advantage of the system (& divert drugs to the black market) who are really responsible for all the hell chronic pain sufferers are having to go through! As a long-term chronic pain sufferer, who is currently being put through the wringer by DASSA, I don't find
comments like this humourous at all! If I get my pain medication cut off, I might as well kill myself, cos nothing else can control my pain :/

Anonymous said...

The way DASSA are treating chronic pain sufferers is just DISGRACEFUL! They have a lot to answer for! How insulting is it to be subjected to frequent reviews (like you're a common drug addict) when you have a very real pain problem (that has been well-documented for over a decade!) They gave me one month to get an assessment by a pain physician (to support my continued use
of low dose semi-synthetic opioids) or
they'd cut them off! How hard is it to get into see a pain specialist this fast? The
pain clinics have 2 year waiting lists & the
private physicians - at least 6 months! Not
to mention the astronomical gaps that
these physicians charge! You'd think DASSA could at least foot the bill since they are the ones DEMANDING these
urgent assessments! I'm just outraged & insulted in the extreme!

Anonymous said...

I wisdh to agree even being an old post reading this article hit home I was a victim of protecting my family home from an attempted home invasion nearly bashed to death i got pain relief when my head was stapled and cuts n bruises all over me however I had healed pain went only for a couple months then the painful onset of FMS set in I was eating panadine forte like lollies told my doc the truth then he begun prescribing stronger opioids oxycontin worked well at high doses but dependance came and I have a shocking tolerance to opioids as it is anyhow went through the rotation of opioids I was put on kapanol MS contin i could function get out of bed and I used it sparingly I didn't need it daily I used it when the pain was unbearable then my doctor had to get authorisation from DDU they cut me of wanting a specialist report im still waiting for a pain specialist even tho been referred to the public system and private I been onto methadone which at higher doses helped but it nearly killed me with respritory arrest I was in ICU for ages they lowered the dose it was no value i was suggested suboxone as a GOOD pain killer by the pharmasicst however I went from 4mg to 32 and no difference in pain if anything its getting worse and being treated like a junkie and the agony i go thru on a daily basis has even made me have suicidal idealisation my family are suffering as much as me I have had enough maybe if the people in DASSA and DDU were tortured and put through agony maybe they would have compassion but they dont the whole DASSA-DDU thing is a right mess though they are happy to kill you with methadone they dont care about pain they all think pain sufferers are junkies which is crap they have it all wrong now people are hitting the streets for drugs and the war on drugs as they call it has been lost they all made it alot worse when it was accesable by a doctor it was regulated now they removed regulation and doctor su[ervision now heroin is making a comeback pain sufferers will soon turn to that DDU and DASSA have it all wrong it maybe time for a class action lawsuit for something to be done docotrs fear DDU but when you have all to gain as a sufferer you will do anything to help people in the same position and to show them they effed up time for accountability