Jun 06 2008
Petition
This petition is intended to register your concern for those who have chronic pain, and are treated like drug addicts. Chronic pain is not just a myth, it is real. By adding your comments to this page, you are signalling to those who authorise Opiate prescriptive medications that you too believe in Dignity for Chronic Pain Sufferers.
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I believe there exists an old school culture & bias with a large percentage of health care workers and public in general about the use for non terminal pain relief. In my opinion these people are generally ignorant of the totally disabling and blinding pain that Cluster headaches do cause. I often wonder how I keep going.
Putting the web-content together was eye opening. It amazes me that in the 21st century, “pen pushers” and “knuckle draggers” in our government think they have the right to be judge and jury to things they don’t understand. Wouldn’t it be a different story if it were their loved ones in this situation.
I actively support this cause.
I was first made aware of this issue through my knowledge of the Betros family. I know Trish to be a lovely lady, and am stunned that the medical system would make her suffer this pain and indignity. In this day and age, in a country like Australia, how can this situation occur? An Australian citizen who has worked hard her whole life, is forced to suffer great pain, and let down badly by the system. It also worries me deeply that were a member of my family to be in the same position, I must expect them also to suffer. This could happen to any of us. Please continue to show your support.
Well done Matt on pulling this together, it needs people like you to promote what is happening here. I saw my mother die and the pain she went through was horrible to witness, it’s just not right. We treat animals more humanly when in pain.
Excellent work Matt, in creating this web site. It is about time someone takes on the fight against the stupidity of the medical bureaucracy for all long term chronic pain suffers.
Far too long these genuine people who suffer from debilitating pain have been lumped in the same category as drug addicts and not treated accordingly.
It still amazes me that medical science has advance so far in the treatment of pain on one hand but these advances can not effectively be used because the bureaucracy that can allow this effective treatment is so antiquated.
I have known Trish for over 30 years and I can attest that she is NO drug addict. Never was and never will be one.
Give Trish and all these other perople the treatment they all deserve to live their lives dignity.
What an appalling situation for those in chronic pain. Well done Matt and Today Tonight for raising awareness of this issue. Its a classic case of blaming the victims rather than fixing the system that should be supporting them. In a world where there are so many conditions that cant be cured, we must support every option available to relieve the suffering.
Chronic pain sufferers are essentially being punished by the current system, just because they require medication that others misuse and abuse. Pain management should be in the hands of those who truly understand each person’s medication requirements, not a department that sees chronic pain sufferers as drug addicts until proven otherwise. What a disgrace.
I fully support this website and am aware of Trish’s plight and pray that all the efforts of her wonderful family and supporters will be acknowledged by those who need to sit up and pay attention. I would hate to be treated in this manner were I in pain, and needed relief. I agree that the “real” drug offenders out there are treated with more sympathy and humanity and even dignity than Trish Betros…..shame, shame, shame.
Chronic pain sufferers deserve to have access to these drugs, Shane I couldn’t have said it any better.
I have witnessed the plight of the Betros family over the past 15 years, their courage and strength amazes me and i cannot understand why a beautiful loving mother such as Trish doesnt deserve the care and compassion and treatment any one else would seek for their own family.
Why put a family through any more “pain” than they are already suffering?
I’ve known the Betros family for some time and they are true heroes. Trish is a great person putting up with so much and Greg is a saint. Give them a break!!
Agree wholeheartedly with the comments and the cause. It is horrifying to think that this could happen to any of us - and in fact is right now!! These drugs were invented to help people in these exact circumstances and to know that they are there but denied has to be a greater pain than if they never existed.
It is time the government put some thought into issues such as this, and used some common sense. Chronic pain warrants powerful relief, just as mild relief is used for mild pain. Don’t punish the victims because of the irresponsible actions of others.
Well done to all involved for their support of this important cause, especially to those who are willing to put time and effort into making more people aware.
I sincerely hope there is action on this matter as soon as possible, to allow dignity for chronic pain sufferers. My thoughts go out to all people and families affected by this.
There needs to be a change and fast, before the pain, stress, and anxiety becomes to much to bear for those suffering and their families!
Unfortuneatly government departments fail to see the physical pain, financial costs and family strain generated by suffers of chronic pain. As a worker in the health care field I am continually frustrated by government bureaucracy and the inability for managers/ politicians to see the bigger picture of chronic health care issues .They are only interested in short term cost savings and what looks good to the general public. Public awareness through such forums as this and voices of discontent on these issues is the only way to get any results. it is the squeaky wheel that gets the oil, so the louder the protest the mors results. I have great empathy for Trish and her family for what she is suffering and the toll it takes on the entire family.
Unfortuneatly government departments fail to see the physical pain, financial costs and family strain generated by suffers of chronic pain. As a worker in the health care field I am continually frustrated by government bureaucracy and the inability for managers/ politicians to see the bigger picture of chronic health care issues .They are only interested in short term cost savings and what looks good to the general public. Public awareness through such forums as this and voices of discontent on these issues is the only way to get any results. it is the squeaky wheel that gets the oil, so the louder the protest the more results. I have great empathy for Trish and her family for what she is suffering and the toll it takes on the entire family.
What an appalling situation …
Well done with your efforts so far, despite such poor response from authorities.
Opiates are not expensive unless they are illegal. I am horrified by the rigidity of our health system, which cannot tell the difference between a bad doctor and a different doctor. Bureaucrats rise to their level of incompetence and then don’t have enough flexibility to make wise decisions as they are so fearful of what might happen to them. Laws are made by politicians, who can be changed every few years, but regulations are made by bureaucrats who are entrenched. We need a leader and some fresh thinking on this matter - John Hill where are you?
Of course. what else makes sense?
I have no personal interest in this situation, but having discovered this web site, I feel I must sign this petition to try and end this nightmarish situation.
I can’t understand why this petition is necessary, as i dont understand how people can be treated like this? We wouldn’t allow animals to live and/or die in such appalling pain. In the UK I am aware that heroin is used medically for pain relief, as a British nurse I knew working here, expressed concern that patients in need were denied this treatment here.
I sincerely hope that this petition will help to change this clearly unkind, unacceptable and unfair situation.
I’m another who has no direct personal involvement in the issue, but supports your efforts. There but for fortune ………….
As a medical doctor I can testify both professionally and personally that someone who takes opiates for genuine pain does not become addicted. In 1986 I had one of the most painful conditions known to medical science and required morphia by injection for 6 months at least once a day and often multiple times a day. I did not become addicted and when the pain stopped was able to wean off opiates in 3 weeks. I have had morphia on a few occasions since as a premedication for operative procedures and have had no craving to continue.
It was humiliating when I was in hospital in 1986 to be treated like drug addict by the nurses when I had to ask for morphia because of the pain.
I have a friend who is suffering with MSA and her life would be unbearable without the use of opiates. I support your cause.
How cruel it is to leave people suffering agony, when drugs which could provide them with relief exist. Most drugs, even paracetamol, are dangerous when abused, so perhaps Governments should focus on education to discourage abuse, rather than making powerful drugs unavailable even for those who are in desperate need. How degrading to treat chronic pain sufferers in the same facilities as drug addicts! Unfortunately, whenever a brave politician does try to raise public awareness of possible medical benefits of a drug which has been heavily abused, the poor soul is metaphorically torn to pieces by the media!
Well done Matt and the Betros family for continually working hard to bring about public awareness for the plight of chronic pain sufferers in our community - I hope they can continue to shine light on this important issue so that it simply cannot be ignored. My thoughts are with your family and the other families that are currently going through this terrible situation.
I have known some chronic pain sufferers personally, and I think the way they are treated by the keepers of the medical system is inhumane.
Why can’t they be assessed as an individual and get the right to adequate and professional pain relief medication? This does not make sense to me.
Ettienne Botha
Im with you all the way, Im sick and tired of being treated like an addict ,I think they get treated better than those with pain. The government needs to pull their finger out and do something to help instead of sitting on their hands saying there is nothing we can do. God forbid if any of their families became ill something would be done then.
I am a professional carer for people suffering chronic pain. I have been witness to the maltreatment of those people. Seen them literally thrown out of a doctors surgery without any pain relief. when it was blatantly obvious they were suffering and had no more pain relief available. This is against human rights. How dare a government body (in a so called modern society) take such arbitrary decisions about the treatment of a patient without the slightest care for their state of life and suffering.
I and the person I care for are moving to another state in Australia in an effort to gain access to REAL pain management not pain sufferer abuse, as that is all that is currently available in South Australia.
Chronic pain sufferers deserve to have access to these drugs. Let them have their dignity
I am 28 years old and have been suffering with Chronic Pain for the last 6 years and take Kapanol (Morphine) everyday.
I would hate to think I could be denied the medication that gives me back a little of the life I once had by letting me do some the things I once took for granted.
To take away someones pain relief is taking away someones life.
Anyone who lives with pain every day should be treated with respect, dignity and Medication!
Well done to the Betros team for pursuing this very disturbing issue, and it displays what is an absolute disgrace by the SA Government.
Its all about persistence, and this will eventually get fixed when the relevant government agency is ‘dragged kicking and screaming’ into the real world.
I strongly support this “Petition” as I am a Chronic Pain Sufferer and can tell you it is NO joke at all, it is debilitating to the degree that you loose confidence as a human being.Without a long drawn out story I had a Tumor removed from the 3rd ventrical of my Brain and still suffer chronic headaches 24/7.
I spent 16 hours on the operating table with Drs & Nurses trying to save my life which obviously they did.My headaches have Never let up since the operation.I spent over 5 months in the RAH hospital here in Adelaide where I received excellent treatment.I spent thousands of dollars travelling back and forth to Perth to see a Doctor who had a New Treatment for headaches.He stopped the really bad ones I used to get that stopped me from being able to do anything.I currently am on medication that allows me to Run my business and Employ workers, without this medication i will NOT be able to run my business so people will loose jobs which leads to more people living off Government Benifits including myself all because some Government Dept has a brain wave.Grow up and listen to people who are REAL sufferers and how dare you put us in the same catigory as DRUG ADDICTS you do NOT know what you are talking about and it is just discusting that you could even think that way.
We are only trying to get on with our lives as best as we can were NOT looking for a high, NO ONE wants to be on such medications Trust me but at least they allow us to move forward and give us some quality of life.Real sufferers know what it is like to go without such medications its NOT a form of pain that can be controlled by Panadene etc,like i said NO ONE wants to be on high dependency Drugs but some of us just have no choice if we want to live a simple life with some dignity.
I strongly Disagree with the act of taking required Drugs away from REAL sufferers.
People living with Chronic Persistent Pain have enough to cope with day to day living their lives and with surviving their never ending life of pain. We all know that Chronic Pain is real and won’t ever go away completely.
All we ask is that our doctors take our pain seriously, stop treating us as if we are all junkies looking for a fix and do their job with some dignity and respect.
It’s common knowledge that opioids are the Gold Standard for the treatment of Chronic Cancer Pain. Well folks our pain is just as bad and we deserve the same level of treatment. Chronic Pain is a deadly disease and needs to treated as such.
Only 2% of those who take opioids to help control Chronic Pain will have some addiction issue to deal with.
We don’t want to take opioids, we need to take opioids to help control our pain. We don’t get high when we take them, there is no buzz, no happy feeling, all we get is lower pain levels. Why is this so hard to understand and accept.
Stop making our lives harder than they already are by putting more barriers in place to stop decent pain management and improving our lives so we can function once again..
I am 40 and a chronic pain sufferer, arthritis to the spine, hip and right leg, requiring daily doses of slow release morphine, which I have been on for 5 years now. Quite often I am told ‘its only a back ache’ or ‘oh i have a sore back too’ whilst I understand that people have dufferent levels of pain (I was a nurse for 12 years) I have even been judges by GP’s, been told because I am so young they are reluctant to up the dosage of my Morpihine due to the addictive qualities. Yet by not upping the dosage when needed, my pain becomes debiltating.
As I am already on the drug, addiction is my last concern. I have 2 teenagers and a very supportive husband, But when my back / knee spasms and the pain keeps me in bed for days at a time - the ‘pen pushers’ don’t see this. they dont see the effect that chronic pain has on families and carers, it doesn’t only affect the one with the pain.
It is wonderful to find a site where people understand, don’t judge, and support what chronic pain sufferers require.
I thank you for enabling pain sufferers to have this site where we can find information and gain support. I totally support this petition.
I wonder if one of the ‘pen pushers’ family members were a chronic pain sufferer, would we have to fight to live a normal life?
I have just found this website and as a sufferer of chronic pain I offer my support and my experiences. I have also experienced problems with receiving adequate care as of January this year and I find the bureaucratic viewpoint incredibly unrealistic and not dispensing adequate care and response to very real situations. I really do wish there was another way instead of “Big Brother”.
my wife is a chronic painn sfferer….not a drug addict. you have my support
My son’s long term pain specialist is unable to prescribe pain relief according to his own professional judgment because only one of the many emergency department doctors my son has seen saw fit to register the possibility that the real reason for the ED visit was just a cover for seeking pain relief (which it most definitely was not.) Now my son is a listed drug seeker. I was present on one occasion when another ED consultant was arguing on the ‘phone with a bureaucrat, seeking permission to prescribe effective pain relief for my son. Again, a professional medical specialist was denied the opportunity to prescribe as he saw fit. The reason - one other doctor had registered a concern. One doctor had the power to limit the professional judgment of every other doctor my son has seen since.
Chronic pain is debilitating. Effective pain relief carries risks, but surely it is the medical specialists’ professional responsibility to evaluate the costs and benefits of prescribing opiates for an individual, according to their personal circumstances and the degree to which the person is disabled by pain.
Thank you to DFPS for taking action on behalf of all chronic pain sufferers.
people who suffer from debilitating pain have been lumped in the same category as drug addicts and not treated accordingly. Pain management should be in the hands of those who truly understand each person’s medication requirements, not a department that sees chronic pain sufferers as drug addicts until proven otherwise., I have nothing good to say about the Pain Management Unit here is S.A. as they put me on methadone Tabs but when I was taking high amount to combat the pain they just cut me off and i was forced to go to a Drug Rehab Centre which is degrading and quite expensive and this is were i will stay, so i really hope this web site opens up peoples eyes on how people with acute pain are being treated
I have just found your site as i was looking for organizations to send my complaint about the trouble i have had getting adequate pain relief.
I have had severe Rheumatoid Arthritis for 25 years now with 5 total joint replacements, 1 joint fusion and a total of 17 joint surgeries, and that is not counting the many, many steroid injections into my joints over the years.
My local GP is having problem obtaining opiate pain relief for me and he is constantly receiving letters from drug of dependency unit and the pain units i have attended at Flinders Medical Centre and the Repatriation General hospital.
I wish to congratulate you on setting up this much needed web site.
Hi My name is Kelly Im 27. This should be made a much bigger issue. I have to been discriminated against. I have suffered from debilitating Trigeminal Neuralgia for over 2 years. I am struggling everyday. The people around me are trying their hardest to keep my spirits up. I too had to do the test at a hospital which also proved opiates were a suitable drug for my pain and after taking many other anti convulsants (tegratol/ lyrica) from the lyrica I became very depressed and wanted to end my life as the pain was only getting worse and no doctor wanted to treat me. I almost lost hope. Till a doctor decided to try me on Pain Patches Which helped alot and gave me a light. Still being treated without breakthrough pain medication I am still in a hell and holding on for my family my friends and my future.
I need my situation changed. I have severe anxiety and I have to pick up my medication daily!!!. (which scares me horribly) Just to get 1 more day without pain. The government needs to treat us as we deserve on an individual and non judgemental manner. My doctor is scared to give me medication!!! What has the world come to.
Please someone read the pleads from the words people are writing. We mean it. THIS IS IMPORTANT> Act now if you can.
On behalf of the fellow Australians that are living with chronic pain and are not being treated with due respect and basic humanity.
Thank you, Sincerely,
Kelly S
The daily treatment I am getting is insufficient and making me feel out of control. the Irony is that I must keep self control through this insane situation or they we deem me mentally incapable. they have pushed me to feel this way. I am doing my hardest to follow through with a bright future but I need some dignity and respect for my miserable situation. We Need help Soon this is Crazy!!!
It’s great to know that people are finally making this issue a priority. We need to bring accountability to the government departments - we have health charters for a reason.
I work with many pain sufferers who are discriminated against each and every day and no matter how many stories I hear (and there are too many) - I am still amazed medical professionals can deny people the right to be free of pain. Regardless of their circumstance, we are all entitled to that basic human right.
I fully support what you are doing and am actively trying to educate others (those not affected by Chronic Pain, obviously) as to the situation. Usually they simply cannot understand or believe how our State could have such regressive - even draconian legislation. As countless others have stated: it is an incredible irony indeed that blatant drug addicts are frequently treated with less contempt by our Medico-Legal bureaucracy.
The current situation amounts to institutionalised lunacy as it ignorantly conflates drug addiction and those who engage in thrill based drug-seeking behaviour with people suffering from genuine chronic pain.
I will try to get as many people as I can to sign this petition.