“The opioid reforms have been accompanied by a dramatic increase in stigma around not just opioid medications but also chronic pain itself. Healthcare professionals are now even more predisposed to approach chronic pain patients as though they are drug-seekers. And it hasn’t gotten any easier or cheaper to access alternatives to medications.”
We had nearly 600 responses, nearly 300 comments on a social media post, not to mention the numerous emails and phone calls. To say this issue has touched a nerve within the chronic pain community is an understatement.
“My feeling of persecution because I am in pain is debilitating. My mental health has been unnecessarily put under undue stress by my private pain specialist, GP and by well-meaning yet also scared, misinformed and persecuted fellow pain sufferers. These changes were handled without adequate care, concern or education. I suspect that there were suicides, hospital admissions as well as the mental health admissions that I personally know of due to these changes.”
As I shared in my blog last week, the chronic pain community has faced many seemingly insurmountable barriers for many years. The latest opioid reforms however come at a time when people living with chronic pain find themselves in an increasingly uncertain and anxious environment with the pandemic.
“Moving is hard enough let alone continual visits to my doctor to receive a script for pain management. In the current COVID climate & being more vulnerable it creates more anxiety & exposure to the virus that could kill me.”
Our final survey report has now revealed some clear themes. For consumers, the latest opioid prescribing reforms have created unacceptable barriers including an additional layer of complexity, loss in function and autonomy, perpetrated stigma and isolation and significant impacts on mental health.
“I have been left in limbo, I have no idea when I will get help, what help I am entitled too, by who or what options I have anymore. I’ve failed many medications with various side effects and am currently having to self-taper as I was told two weeks ago my current script won’t work (thank god it did! Or I would have had no medication for the past week.”
“You don’t stop taking 4 panadeine fort a day cold turkey!) and I needed a second opinion. Despite seeing the pain management team I still don’t know what my outcome is or will be. I’ve been in high pain and feeling suicidal for the past 6 weeks. I don’t feel safe to tell the medical professionals this as I feel they see me as a "drug seeker". I don’t feel safe, I’m scared, I’m in pain and they don’t care, I don’t matter.”
These are just a few from the thousands of comments we received. And the message is clear, these opioid reforms have penalised patients, leaving them with too few alternatives during one of the most chaotic times our country has seen.
The survey’s findings outline the lack of co-ordinated communication to support these significant reforms to the availability of opioids. The findings also highlight the lack of accessible, and affordable options for the management of chronic pain, and especially the huge mental health impost of chronic pain.
“I cannot keep my pain under control, if my GP is away and I need to see another GP to get a script because it has run out due to the smaller quantities I am falsely accused as being a opioid dependant addict and not given a new script even with explanation of my illnesses and therefore I am left with over the counter meds or having to sit at home in chronic pain and call an ambulance to take me to hospital.”
These are issues that need urgent resolution. Painaustralia has recommended that these reforms must be supported by a targeted communications campaign that is consumer centred and can address the negative impact on patient sentiment. We must now also expedite key activities that were outlined in the National Strategic Action Plan including:
system navigation support
MBS supported pain management plans to provide support for consumers and health professionals in managing the effect of these reforms
mental health support specifically for those within the chronic pain community impacted by these reforms together with the pandemic.
Just like there is no one size fits all solution for chronic pain, there is no single policy reform that will fix the enormous toll chronic pain exacts on our country. While we would like to see a strategic and comprehensive approach to chronic pain, we recognise that even baby steps can make a difference when it comes to providing some relief to people grappling with accessing appropriate care and support.
In a pandemic landscape, ensuring there are replacement treatment options to the ready availability of medications that had become a staple treatment for pain is not only what is needed, it is the moral responsibility of any society. We have to do better!