How old are you?
What is your gender?
If you answered 'Other', Please specify
Are you of Aboriginal or Torres Strait Islander origin?
If you are of both Aboriginal and Torres Strait Islander, mark both responses: Yes Aboriginal, and Yes Torres Strait Islander.
What country were you born in?
If your answer is Other, which country were you born in?
Do you speak a language other than English at home?
If more than one language other than English is applicabe, select the one that is spoken most often.
What is your post code?
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How would you describe the area where you live?
We understand you live with pain, do you also care for someone in pain?
About your pain experience
How long have you lived with pain?
Please rate your pain
Where 0 = no pain and 10 = worst pain imaginable.
|The worst level of pain you have had in the past week?||1||3||8||14||24||38||108||165||255||162||123|
|The least level of pain you have had in the last week?||45||83||152||175||139||126||66||58||37||11||9|
|The average level of pain you have had in the last week?||2||11||28||57||121||199||191||158||90||33||11|
|The level of pain you have right now?||17||30||40||90||107||125||135||149||122||66||20|
Tell us about your type of pain
Please select as many that apply.
Tell us how you manage your pain
Did your pain start after trauma?
If you answered YES, please indicate the type of trauma.
If your answer is Other, please specify
Reflecting on how your chronic pain started, what are your thoughts on how others may prevent their pain from developing into long term?
Please select as many that apply.
The next few questions will ask you to comment on a scale of 0 to 10
Where 0 is “not at all” and 10 is “completely”.
|How much does pain affect your life overall?||0||2||11||22||29||58||74||138||167||144||256|
|How much does pain interfere with your general activities?||1||4||13||19||43||51||109||136||174||155||196|
|How much does pain interfere with your work (paid or unpaid)||20||8||22||32||27||76||69||79||129||125||314|
|How much does pain affect your family life?||10||10||25||31||41||75||89||134||193||121||172|
|How much does pain affect your social life?||3||8||19||26||49||62||70||107||156||171||230|
|How much does pain affect your mood?||1||5||20||32||42||58||92||128||162||167||194|
|To what extent do you think you understand why you have pain?||13||19||26||19||24||69||53||77||182||183||236|
|To what extent are you able to access information to help you learn how to manage pain?||8||17||29||32||49||98||71||124||169||140||164|
|To what extent do you understand the information you have been given about your pain?||11||15||20||24||38||85||61||103||139||186||219|
|To what extent do you feel you manage your pain so that it doesn’t intrude on your life?||32||46||72||66||81||139||98||136||112||72||47|
|To what extent are you able to access services to help you learn to manage your pain?||57||82||96||75||80||114||78||101||83||66||69|
|To what extent do you believe you have access to the best possible assessment and care?||81||84||84||85||69||123||80||97||84||56||58|
|To what extent do you feel you are able to communicate meaningfully with your pain management doctors and health professionals?||55||61||79||70||68||91||91||94||111||88||93|
|To what extent do you feel you are supported to manage your pain?||71||88||86||81||88||90||84||107||81||75||50|
|To what extent do you believe that the community around you understands the nature of your chronic pain and what you have to do to manage it?||203||199||149||109||66||48||26||25||26||28||22|
|To what extent do you believe that your pain is believed by other people?||71||136||159||113||92||89||59||49||57||45||31|
Have you ever been asked by a health professional to contribute to developing educational or other materials that are used in pain management treatment?
Would you like to have more information about your pain?
Before reading this survey, were you aware of Australia’s National Pain Strategy?
If you answered YES to the above question, do you support it?
In you answered NO to supporting Australia\'s National Pain Strategy, can you tell us why?
|Guest||I have never previously been informed of the existence of a specialist pain management strategy nor been informed of research activities.|
|Guest||My pain specialist never told me about it. They usually are not concerned about those things. They don't see a big picture. It is about giving the meds to manage pain. That is their main focus - to get patient better. Only staff involved in these initiatives would perhaps talk about it, but ordinary pain specialist wouldn't. Perhaps they may be unaware themselves of the program.|
|Guest||Didn't know it exists|
|Guest||Because my old pain doctor, Chris Hayes, is part of it. And he did not do the right thing in helping me.|
|Guest||never heard of it|
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Is there anything else you would like to tell us about your experience with pain?
|Guest||GPs do not access pain management clinics enough; GPs need to be educated about pain, especially with fibromyalgia, which is often met with a raised eyebrow.|
|Guest||Life would certainly been easier without it but when you finally accept it's a lifetime experience, it's a long process to achieve of state of acceptance & peace knowing that you can actually life a full & satisfying life with it as a constant. It's also frustrating at times to know that the strategies that one develops to manage it require a faithful approach. If you do not stay faithful to your strategies, they will not remain faithful to you. Such discipline can be difficult to maintain.|
|Guest||I have severe abdominal pain, made worse with any movement. It has affected every aspect of my life. Pain medications only provide a slight edge off the pain when I overdo things. Pain specialists are inconsistent with their diagnosis, all treatments re injections, tens, physio, etc have failed. I strongly feel I have many adhesions causing this pain, not nerve pain as pain specialists think. They diagnose nerve pain and surgically there appears to be nothing that can be done to fix nerve pain. I find it impossible to believe that if nerves are causing pain, surely something can be done surgically to fix it. Nevertheless I am without doubt in my mind that I have adhesions and need an excellent surgeon to go in and firstly diagnose this for certain. I am having awful digestion problems and continual overflow with my bowels. I vomit after a large meal, but have severe reflux and I eat very small meals. My pain is there 24/7 , I have developed a spasm in my masseter muscles in my face from clenching against my abdominal pain, these spasms are also very painful at times. I desperately want to find a hero, a very special surgeon willing to listen, understand the nature of my pain, look at my history that was the beginning of this pain as it is there where the clues lie. I need someone to try to help me, I am 58 years old and this has impacted my life immensely. After saying all that, why do I feel like pitiful me, my pain is happening, real and yet I feel like no-one not even the most important people I need to listen and help me, doctors/surgeons are not interested in fixing some other surgeons mess. Too bad for me, whatever happened to duty of care, opposed to covering their #rses. I am angry, but tired and have tried to stay on top of any negativity for almost four years, it is wearing me down fast and hard now. The pain is developing new symptoms, I sense things are simply not ok in my abdomen, does it have to get to another emergency before someone will listen, care and act. Adhesions can be silent killers, I have them I know it in my bones, someone must go in and look.|
|Guest||it is debilitating|
|Guest||It has ruined my life, specially my young age when I was meant to enjoy life the most. It hugely impacted my relationship and I don't think I would want to get involved in another relationship (after my husband passed away) because nobody would tolerate me with this type of pain. It causes huge morbidity and sexual disfunction. It is a real embarrassment to talk to others about it and women suffer in silence. There is no research currently underway in Australia to unlock the mystery of this pain. Also, there is a clinic that does holistic approach to management of vulvar pain, but how can working families afford it is another issue. I am a single parent now and I do struggle financially. I can no longer afford expensive specialist visits. And who knows if what they do would really help.|
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