Neglect and stigmatization of chronic pain should embarrass us all

The MJA this month leads a themed edition with an editorial on the public health and social consequences of persistent pain which makes sobering reading. For my own part I am well aware of this, as I spend most of my working life (when I’m not pinching the time to write these columns of course) working with sufferers of various types of pain.

There are many barriers to adequate treatment for pain-related problems, and it is an area of medicine where Australia spends shamefully little on research. In the UK, Europe and the US there are many basic science labs researching pain-causing conditions. There are clinical research institutes and academic departments of pain management. In Australia….tumbleweeds. A few committed and charismatic individuals have been able to convince the universities and governments to fund their research, but there is no co-ordinated national framework to even begin addressing the problem. The Pain Management Unit where I am based, which was the first in Victoria, did not have a secure long-term funding stream until last year. That meant for more than a decade we were solely dependent on the goodwill of the CEO and executive of the organisation as we raided the budget of our parent department on an essentially ad hoc basis. According to the Australian Institute of Health and Wellbeing’s 2005 figures, musculoskeletal pain constituted the single largest disease non-fatal burden in adults. It is a public health and economic problem that is rivalled only by mental health and cardiovascular disease when you look at the disability it causes. It’s hard to believe that so little has been seriously done at a government level to address it.

As difficult as it has been for us to get our service funded, it has been even harder for those we serve. First-line nerve pain drugs like gabapentin, pregabalin, duloxetine and amitriptyline are not on the PBS for this indication. Pregabalin is not even on the PBS at all. One of the cornerstones of drug management of pain is the opioid class, which is subject to so much social repugnance and misinformation that many choose not to even try them. Others may be forced onto them because more effective and less potentially harmful treatments are denied them by geography or lack of infrastructure, due to decades of underinvestment in pain services. Poorly treated pain sufferers are probably second only to cancer patients in their vulnerability to outright quackery for these reasons as well. Serious pain management expertise can improve the lot of most of those who manage to get to see someone, but this expertise is only available to relatively few. In the absence of something more effective, desperate people turn to improbable measures.

Australia is a wealthy, first-world society with a strong economy and an identity built on helping others through adversity. The underbelly of this identity can be a suspicion and scapegoating of those not perceived to be pulling their weight. If I was trying to fake my way onto a pension, I would certainly not pretend to be a chronic pain sufferer. If you look at the figures it’s not a lifestyle you would choose at all.

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Anne Collins

Former IT Manager

I had worked since I was sixteen and had worked for three years at the IT Manager for one of Australias' richest men before I was suddenly without warning hit with incredible pain in my right hand and arm. It took me a year to find a doctor who could tell me what I had. Even though I told my doctors I was in incredible pain 24/7 and that nothing I brought would help they never gave me anything until I found Dr Cohen at St Vincents. I got no sleep and on top of that was bullied like a criminal until…
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I had worked since I was sixteen and had worked for three years at the IT Manager for one of Australias' richest men before I was suddenly without warning hit with incredible pain in my right hand and arm. It took me a year to find a doctor who could tell me what I had. Even though I told my doctors I was in incredible pain 24/7 and that nothing I brought would help they never gave me anything until I found Dr Cohen at St Vincents. I got no sleep and on top of that was bullied like a criminal until I had a nervous breakdown. Why would someone who worked at my level with my pain make this up to live on Workers Compensation but my boss wrote to the Insurance firm saying I was comnitting some sort of fraud. I found the whole system to be full of doctors who made I found half a million dollars a year to back insurance companies claim that there was no injury. I found that lawyers did no work because the strategy was to get the workers in a room prior to court and force them to settle for the minimum. I found medical treatment via tv programs or internet research. Everyone treats you like a criminal and a possible drug addict. I used another doctor in the same rooms because my doctor was training and the Health department sent letters to all my doctors saying I must be warned not to doctor shop. I wanted to write and complain about this mis information and slur and was told not to. I have a book of bullying and rorting of the system but by those earning millions from it not the worker. I have lost a million dollars of income yet my boss who refused to do any OH@S did not even get a warning or have to pay. This fear of us turning into the USA legal system is used by the insurance companies and all interested parties to bully all governments to take the rights of workers for a safe workplace and to sue the employer for criminal negligence. The unions have done nothing to help workers and that is why they are no longer relevant or have members. As the writer says this country is rich but the statistics show the money is going to overseas companies and the elite and the average australian worker is paying all the taxes and working in dangerous places. Workcover changes the names of the injuries or does not keep the correct figures so that there is no evidence to fight with. You can only see the trends by looking at the truth of the overseas figures. This country is not as it sells itself overseas and one day it will come out

about 1 year ago report
1. Pauline Miles
  
  Arts Practitioner/Practicing Artist
  
  In reply to Anne Collins
  
  Yes I can relate to your story your story. In 1982 on a day in September it changed my life. I was working for the WA Child Welfare Department in a low paid job, in a tin shed without the correct OSH conditions to make it a safe place to work. It was raining on that fateful day and I was taking goods out of a trolley into the shed. The shed had three steps that I had to navigate that were made of wood and had over time worn out. The dimension of the tread of each step was about 6 inches and one had…
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  Yes I can relate to your story your story. In 1982 on a day in September it changed my life. I was working for the WA Child Welfare Department in a low paid job, in a tin shed without the correct OSH conditions to make it a safe place to work. It was raining on that fateful day and I was taking goods out of a trolley into the shed. The shed had three steps that I had to navigate that were made of wood and had over time worn out. The dimension of the tread of each step was about 6 inches and one had to launch the steps sideways because you foot did not fit onto the tread. I used to hang onto the door post in order to steady myself. By the way the steps were made by children who had been detained by the department in an institution for rehabilitation. I combined many times about the steps and had notified the department that clients had taken a tumble and had hurt themselves.
  
  To cut a long story short I had a server back injury as a result of slipping on the steps. I was a single parent paying a mortgage with no other support but for the income I earned. This of course was a concern to me and the pain and worry resulted in a breakdown. Medicate the issue medicate the person rather than addressing the issues that are caused by inadequate mechanisms to make the employees accountable for the lack of attention to OSH issues. When I was going for comp I had to seethe insurance company psychiatrist, he asked me how I felt, I said I was not happy about what had happened and his reply was You are still angry and Why have you stayed single? My response was what do you want me to do clap my hands and say hooray my life is a mess and i am in pain both physical and emotional Pain. Yes lets blame the victim for not coping with a system that targets and as you so rightly say bully people into submission and silence them. A system that is discriminating and wanting to say the least.
  
  about 1 year ago report
Anne Collins

Former IT Manager

What I did not mention above is that my injury was caused by my using the computer mouse sold with the computers. I was installing Windows systems into a large office network and forced to work long hours of support by myself.
I found all the evidence that this injury was known to Workplace and government health systems by finding articles in the NSW Workcover library.
The first warning here was by the University in Canberra to its staff.
I found the first who got injured were Apple computer users…
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What I did not mention above is that my injury was caused by my using the computer mouse sold with the computers. I was installing Windows systems into a large office network and forced to work long hours of support by myself.
I found all the evidence that this injury was known to Workplace and government health systems by finding articles in the NSW Workcover library.
The first warning here was by the University in Canberra to its staff.
I found the first who got injured were Apple computer users who were graphic designers. They made the size of the Apple mouse smaller. Then it was the stafff at IBM who were hit.
I found that Mr Gates designed the mouse size on the basis of the measurment of hand size based on USA army recruits in Germany. This is a tool injury called static load and has been around for hundreds of years and would easily have been foreseen.
Now Microsoft have warning signs on the bottom of the keyboards about that and the mouse dangers. Why else is there now many sizes of mouse.
Women are the ones using computers the most but the fact their hands are smaller and more delicate is ignored.
This is a class action waiting to happen but nobody in this country has the intellect or the courage to do it or so it seems.
In the states it is called Mouse Shoulder and here it is called Mouse Arm.
They keep renaming it so that the figures do not look as bad as they really are. If someone in a union did some homework it would be easy to prove that this country has been negligent in looking after the health of its workers in a major way. Almost everyone I know of suffers some pain from being on computers all day and that is why the computer companies are trying to get people to use tablets and not keyboards or mouse. They know that one day they could be looking at being sued. Someone should hold Mr Gates accountable for what harm he is doing and he should be using some of the money he is using save those in Africa to help people like me who life his software and hardware has destroyed.
As he said the internet is the way of truth and justice and one day it will come back on him.
Why is there no legal group in this country prepared to take this on. It is hard because the medical profession do not really back up their claims of expertise in court and most will not even turn up to give evidence for patients.

The shoulder is the most fragile part of the body and the nerves that come down from the neck to operate the arm get damages as we were not designed to do this work at all let alone for days and weeks and years.
You do not have to be smart to see that is the truth and was called writers cramp. Dentists and musicans get injuried for example so why would it not be forseen that this was an injury waiting to happen.

about 1 year ago report
Anne Collins

Former IT Manager

Seventeen years ago I asked the doctors why there is no research on these injuries as before they bullied all women who complained of RSI until they shut up and every women was too frightened to complain.

He said the Australian government refused to fund research. I gather that is because they would have to then agree they were wrong and the women were not the liars they said they were.

There were no such thing as Pain Managment or Musculoskelatal specialists when I got hurt. You only have…
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Seventeen years ago I asked the doctors why there is no research on these injuries as before they bullied all women who complained of RSI until they shut up and every women was too frightened to complain.

He said the Australian government refused to fund research. I gather that is because they would have to then agree they were wrong and the women were not the liars they said they were.

There were no such thing as Pain Managment or Musculoskelatal specialists when I got hurt. You only have to see how many there are now to know that the problem is not going away.

If you are really sick you have no energy to fight the system and they make sure you have no resources to fund a fight.

This is how the system keeps the costs down. It does not sue or imprison the managers or companies who do the wrong thing it treats workers as the ones to blame. It takes away the rights of the citizen to sue the workplace .
It says if we can not see it , it does not exist and if things lke MRI proves that it is physical it finds another way to hide the evidence.

It says to lawyers and medical people we have to keep the costs down so we will only pay you a nominal amount and if you work for the patients rights we will exclude you from being able to do the work.
The methods that are used are amazing.

Now the NSW government says we have too big a hole in the budget so we are going to exclude the injured worker from assistance even more and they will do this miscarriage of justice with the help of the system.

How is it nobody is examing whether the injuries are higher than overseas or if they come from the same managers or companies?
They need to stop this cost to the country but they are picking on the victims and not the ones responsible and therefore it will never stop.
People only change behaviour when they have too.
Workcover only takes those that kill to court and that is only sometimes.

I spent thousands trying to find work to no avail. I wondered why I got nowhere when I could of worked as a hands on manager as I had before.
When my boss was told he was making my injury worse and maybe permanent he went ahead and did it more and even though it was apparent what he was doing neither the Insurance Claims Manager , nor the Workcover Representative nor the medical people present did anything to protect me by reporting him.

The system looks good on paper but nobody is really watching what is happening and certainly not the unions.

The medical profession could get together and object to what is happening but only a few will practise their oath let alone fight for the sick and poor.
I comment doctors like the above and I thank you for giving me a lift in a life of pain where I want to knock myself off every day.

about 1 year ago report
1. Michael Vagg
  
  Clinical Senior Lecturer at Deakin University School of Medicine & Pain Specialist at Barwon Health
  
  In reply to Anne Collins
  
  Thankyou for sharing your story Anne.
  
  Sadly your story is a typical one, similar to so many chronic pain sufferers. What has happened to you illustrates clearly the difficulties of the current adversarial system of compensation which deals perfectly effectively with straightforward injuries and catastrophic ones, but results in huge stress and lack of support for those whose recovery is incomplete, or who suffer from conditions where tissue dysfunction is the problem, rather than outright disease.
  
  I wish you well, and you can rely on the knowledge that there are indeed an increasing number of us who are working to improve the delivery of care to those like yourself.
  
  about 1 year ago report
Peter Redshaw

Retired

I have to agree with this article and many of the other comments here. The initial injury that set off my long-term pain issue and my journey to deal with it started over 18 years ago. It was a combination of wrong steps and very poor support from the medical fraternity that made my condition much worse and far more difficult to treat once I found the right help. That is a large part of the problem.

It is too easy for doctors and others to treat you like a malingerer, as someone putting it…
Read more

I have to agree with this article and many of the other comments here. The initial injury that set off my long-term pain issue and my journey to deal with it started over 18 years ago. It was a combination of wrong steps and very poor support from the medical fraternity that made my condition much worse and far more difficult to treat once I found the right help. That is a large part of the problem.

It is too easy for doctors and others to treat you like a malingerer, as someone putting it on, or blowing it all out of proportion than to listen to you and properly investigate your condition. The biggest problem is in finding people who will actually listen to you than those who think they know best yet only make thins worst.

Examples include when I woke up in the early hours of the morning with my neck in severe spasm and this had been set off by an earlier upper back injury from work a couple of days earlier. When I went to the hospital the doctor only came as far as the door and asked me what the problem was. I tried to tell him but he cut me off and told me to take a couple of panadol and go to work as if it was just a headache without any examination and walked away.

I than had about three years of doctors, medical specialists and physio’s who simply did not listen. They often sent me off to the wrong specialists etc who more than often only made my condition much worst. It was only after I found a physio who was also a Feldenkrais practitioner, a very good chiropractor, as well as very acupuncturist and a doctor who actually listened to me that things very slowly stated to turn around. And a very important thing, a diagnoses, by in this case a Rheumatologist for the condition. Without a diagnosis, no one takes any notice of you or your condition.

One of the biggest problems with severe long-term pain that neither painkillers, nor treatment is unable to managed, is lack of sleep. It took me about five years to be able to drop of to sleep any longer than 10 minutes before the pain would wake me up again. If I was lucky I may have got an hour to an hour and a half sleep a night. Pain aggravates the initial condition and makes it much harder to treat. And than it has many other impacts on your health your memory and ability to function in anything resembling a normal life. But treating the pain alone without treating the actual underlying cause is also no answer.

about 1 year ago report

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