I had a terrible experience with the Shoalhaven Chronic Pain Service recently. This is a letter I have sent to the hospital this evening. I'm positing this because I don't want any other young person with chronic pain in this area to have the same experience, and also am reaching out to members here to see if you've experienced anything similar.
Background: I am 31 year old woman who has experienced chronic back pain for the past eight years, beginning in my early 20's. Sometimes debilitating and sometimes manageable. Currently un-diagnosed.
Hi ***** (administrative liaison that I don't want to name),
I am hoping you might be able to tell me who I could give some feedback to about my appointment today with the pain specialist?
I found the initial chronic pain nurse education seminar interesting and informative, the nurse was very empathetic and told us we'd get a 'full hour' with the pain specialist after the seminar. I left feeling quite hopeful and looking forward to the appointment with the pain specialist.
That said, I attended the pain specialist appointment today and I was very disappointed. It seemed as though the doctor had not read the long questionnaire that I filled out regarding my symptoms, treatments & medications, tried to send me on my way within 20 minutes with a script for anesthetic patches and told me to come back in six months. Considering how long I’ve waited for this appointment (just under 5 months), I expected something much more comprehensive.
When I expressed my frustration to Dr*** at being told to come back in six months with little to no treatment plan, he said that ‘you have had this pain for eight years so what’s another six months?’.
I was upset by this comment and expressed my disappointment. I asked if there was anything else he could suggest and he said that I could attend the group pain management therapy available at the hospital, but also that he didn’t think it would be suitable for me because (I paraphrase here) I am too ‘functional'. I am thankful that I can work and lead somewhat 'normal' life, but I cannot understate or begin to describe in this email how living with pain has and continues to affect my work, social life, mental health and physical health. I cope by self medicating and trying my best to ignore it. I would not have sort out this service, gone to my doctor to ask for a referral and waited for 5 months if I didn't need help.
When I asked Dr *** if he could refer me to a physiotherapist, exercise physiologist & psychologist who have experience treating people with chronic pain he said that he ‘didn’t know of any’ and to go back to my GP for a referral. Considering he is a ‘pain specialist’ I found this unbelievable. He then suggested I see a Rheumatologist and a Neurologist but when I asked him to refer me he said he couldn't, and that I should ask my GP. Again, I don't understand why someone who is a pain specialist couldn't refer me to these services.
I had also expected that the pain specialist would at least TRY to pursue a diagnosis or some kind of explanation as to why I’ve spent my 20’s (and now my early 30's) with persistent, unrelenting, unexplained back pain that has impacted every area of my life, regardless of the fact that previous blood tests & imaging scans have not been able to point to a diagnosis.
As someone who is open minded and actively (sometimes desperately) seeking out medical professionals to help me cope with my chronic pain, hopefully with the minimum amount of drugs necessary, I was expecting the chronic pain service to put together a multidisciplinary management plan to reduce/manage my pain. I am devastated by my experience today.
I understand that the public health care system is under a lot of pressure, and probably full of people like me asking for help. I also understand that there are many people who are in much more serious health situations than I. I commend the initiative to run a chronic pain service for the community to access and I hope it does help some people.
When I consider the difficulty I've experienced in finding effective treatment for my chronic pain over the past eight years and my experience today, when I consider the experiences of people near to my age (20-40years) that like me have suffered chronic pain, especially those who are as yet 'un-diagnosed' - it seems blindingly obvious why there is an epidemic of opiate abusers in this country (& around the world).
I do not in anyway mean to direct this to you ***, thank you for your correspondence. I just ask that you pass this on to someone who might be interested in feedback about the chronic pain service, and I hope that another hopeful person like me doesn't have to go through the same experience.
Hi Layli P
Good on you for writing the letter, may be if more of us did who did have a terrible experience with a multidisciplinary pain clinic they might change a few things (though I doubt it)
I was basically one of those people who were told it’s in my head ( even though mri’s proved otherwise) The highlight of my first visit was when they said I could fence my sheep off From getting to the dam to drink????? Having a huge projector image of a pack of sheep/ some lines down to a dam where they walk to drink.
I did months of travelling to these seminars, travelling is my main cause of flare ups, then they expect you to sit/ stand/ lay for 5 hours???? February of last year I asked my gp to refer me to a pain specialist who runs his own clinic, I seen him in the March and through 7 horrifying months I was off my meds. No I never coped well at all and will never get that dependent on pain meds again, the pain is a forever hell , it hurts while on pills or without and the migraines are constant (though I do get a few days reprieve from them after a visit to the osteopath, $80 to be migraine free for a little while— ) and they will always be back , never go too far. now i take endone often, gave up panadol osteo, turmeric, ect all to which was just wasting money , ok I will admit I drink more now than I did on pills . I do TRY To walk when I can , even if it bloody well hurts, hurts before a walk and after . If I can get to a shopping centre I find walking is head friendly there, I window shop, might even see someone for a chat, plenty of seats to rest on . I walk down to end shop and back .
Good luck on that letter, wish I had thought about that 4 years ago,