Jun 27 2008
Today Tonight Story
The following text is provided, courtesy of Channel 7 & Today Tonight Adelaide. The video may be viewed at http://www.todaytonightadelaide.com.au. Navigate to the link, and search for the “Drug Pain” story at the left of screen.
The Story - 30th April, 2008 by Sharon Smith
Trish Betros lives every second, of every day in pain.
A former GP and mother of two, she has an auto-immune disease that’s destroyed her joints and caused blood clots leading to gangrene, and left her entire body wracked with indescribable pain.
“I’ve gone from operation to operation. I’ve had over 57 procedures, and operations, including lots of joint injections,” said Trish.
“Pain’s very personal, but for me there’s nowhere, no position that’s comfortable, because every bit of me’s involved in this disease now.”
Her condition is so bad Trish is being given chemotherapy even though she doesn’t have cancer.
“I feel like I’m being punished for being sick and needing pain relief,” she said.
The only respite she’s had in the past 20 years is from huge doses of pain-killing drugs, prescribed by one of this country’s and the world’s foremost pain specialists, Dr Ian Buttfield.
Under Dr Buttfield’s care, Trish got her pain so much under control that she could actually apply to and start a part-time Bachelor of Arts at Flinders Uni.
Trish’s husband Greg, is in pain too. The pain of watching the one he loves suffering.
“I think the strongest emotion I feel is total frustration, because I can’t do anything to help,” he says. “I have to rely on other people, and that frustrates me. I want to be able to do it, I want to be able to help my wife, hence the reason I’m here today, talking to you.”
Trish continues: “To see him in tears, because he can’t hold me, because it hurts too much to hold me and cuddle me now, he’s just so frustrated. And now to find that I have to go through hoops and ladders and bureaucracy to get my medication, to relieve my pain…”
Their dilemma is a result of a war waged by our medical authorities against Dr Ian Buttfield, the one man with the expertise to treat such extreme cases. At one time banning him from prescribing the powerful drugs necessary to quell the agony.
Greg told us: “Dr Buttfield has provided a service that is quite simply absolutely unique.”
He has written letters to politicians, the churchanyone who he thinks might listen.
“I will go as far as I absolutely have to,” he said. “I will not stop. If someone said to me: ‘you’ve gotta give up your right arm and we’ll make Tricia better’, take my right arm, take my left armI don’t care.”
Colin Shaw’s agony is different. He suffers what’s called “cluster headaches”. Blinding pain worse than a migraine, when they hit, the best he can hope for is to knock himself out.
“They call them suicide headaches in the trade,” Colin said, “specifically because of the large percentage of people who suffer cluster headaches, versus that who suffer migraines, commit suicide as a result.”
Another patient of Dr Butffield’s, Colin says his life dramatically improved once his condition was brought under control.
“My whole standard of life in general in every respect picked up.”
And then there’s Judy Seabrook. For almost all of her adult life, she’s battled with a debilitating disease, brought on as a 19-year-old after a case of the “Hong Kong flu”.
“We’re just afraid because there’s nothing that can be done by normal people, to fight this,” explained her husband George. “It’s just incredible. They’ve taken away the one thing that supported her, and that’s Dr Buttfield’s care.”
What’s most disturbing is not that these people talk of suicide, but how easily and readily they bring up the subject, and tell you why they haven’t.
“Everyone always says to me: ‘how do you keep going?’” said Judy. “Well, I don’t know how I keep going. I’ve thought of suicide many times.”
Colin said: “I would have done it a long time ago if I believed in God, but unfortunately, I don’t.”
Dr Buttfield said: “The main problem, I think, is two-fold. One is what’s called ‘opiophobia’, that’s just fear of prescribing, and second, some people feel that the only thing to do is to stop anybody treating pain, including myself.”
Dr Buttfield says he asked health authorities to train someone in this specialised field 10 years ago. And now, on the brink of retirement, there’s literally no-one left to hand over the reins to when he leaves. And, it seems, no-one else wants to do it.
“There’s a lot of doctors that won’t prescribe now,” he says. “Patients don’t know where they can go to get help, and certainly the people who knew the work that I did are very aware of what’s happened to me and they know that it’s wrong. And so they’re frightened as well.”
Doctor Buttfield has been the subject of a five-year investigation by the Medical Board, and fought through the courts to retain the authority to prescribe highly-addictive drugs like methadone.
Roger Paterson is an orthopaedic surgeon and treats some of the same people as Dr Buttfield, including Trish Betros.
“Nobody gets it,” said Dr Paterson. “Nobody believes that someone can live in that much pain all the time, for so many years.”
He also refutes criticism of Dr Buttfield. “I think he’s at the cutting edge of what he does,” he said. “He’s got plenty of international support for what he does. These people aren’t on it because they’re drug addicts, they’re on it because it’s the only thing that keeps their pain under any kind of reasonable control. And there is a consensus amongst experts in this field that there is no upper limit to the amount of narcotic you can use.”
One of reasons this is such a sensitive issue is the risk that some of these drugs will end up on the street.
But that’s where some of these people might be forced to go to get the medication they need.
“My only brief excursion into trying to do that failed, with me being taken for a ride, losing a lot of money, getting assaulted,” said Colin.
Some time ago, the body that regulated drugs of dependence in South Australia merged with the one looking after those addicted to drugs, forcing the chronically ill to line up along side drug addicts.
Dr Buttfield said: “The people who should be being regulated are regulating the system, and secondly they’re using that power to force people with pain into a drug of addiction unit.”
That’s exactly where Trish Betros was sentWarinilla clinic in Norwood is a treatment facility for drug addicts.
“I’ve felt physically sick having to push these people into programs that I know won’t relieve their pain,” said Dr Buttfield. “It’s been a nightmare for me, frankly.”
And so these people, already at the end of the line, have come to a full stop.
A emotional Greg said: “I am most afraid of my wife not being given the appropriate medication, and for the next few years of her life, dying in extreme and utter agony, which I am just not prepared to watch happen. It’s just not acceptable.”
I totally support the provision in the public health system of a sector devoted to keeping chronic-pain sufferers as functional as possible. Whatever they need in the way of medication (methadone, morphine, pethidine) is surely a lot cheaper on the system than putting them through programs for people who self prescribe these drugs illegally for mental health problems. We don’t want loads of people not working when they could, just because they can’t get relief from pain- it’s hard enough to get a disability pension anyway. We give disabled people with schizophrenia and manic-depression hugely expensive drugs in whatever quantities will keep them out of doctors’ hair (and out of the non-existent refuges we used to call mental asylums). What’s the difference?
I’m a student of public health and I find a lot of current health policies completely impractical, especially when implemented the way this pain medication business has been. Let’s get some serious debate on this out in the open where ordinary people can hear it.
Hi, good post. I have been woondering about this issue,so thanks for posting. I’ll definitely be coming back to your site.