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PACE program for chronic pain

Posted By octoberjm53

"PACE program for chronic pain"

About: Perth Children's Hospital / Complex Pain Management - Clinic K

(as the patient),

I took part in the PACE program for chronic pain and it seemed to me that my individual experiences were ignored and not taken into consideration when planning treatment.

I believe I was urged to do exercises which meant I suffered from minor joint dislocations, as I was hyper-mobile in a group of hypo-mobile peers. When I reported to have pain, I was told it was a part of the recovery (think of the saying it gets worse before it gets better).

I feel that I also had my anxieties improperly treated; a part of my fears were regarding feeling unsafe and like people were going to attack me while I slept. I was told to gradually take steps to essentially disprove this by leaving my bedroom door and curtains open. 

What I felt was the dismissal of my very real problems still affects me to this day; I feel like it’s my fault that I’m in pain because I’m not doing stretches every day (part of the program was about getting into a pattern of doing the same things every day even when I felt so weak I can’t stand) and feel like I need to get used to it when I am overwhelmed because withdrawing just causes it to get worse.

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Responses

Response from Tim Jones, Co-Director Medicine, Child and Adolescent Health Service - WA 2 years ago
Tim Jones
Co-Director Medicine,
Child and Adolescent Health Service - WA

Head of Department

Submitted on 20/10/2021 at 4:28 PM
Published on Care Opinion at 4:29 PM

Dear octoberjm53,

It sounds like things are really difficult for you at the moment. I have discussed your feedback with the PACE team, and they are very sorry to hear of your experience.

The PACE program was established to help young people to gradually return to activities and functions that have been limited by pain and it was developed based on several well-researched international paediatric pain programs. One of the key components of this type of program is self-management and graded exposure. This is used to address both physical strength and conditioning as well as managing fears and anxieties individuals may have.

We acknowledge that this type of treatment can be challenging, and understand that it can feel uncomfortable for some at times. We always endeavour to work hard in supporting patients through their individual processes. As you may remember, a thorough assessment was conducted prior to you starting the program in understanding the individual needs of our participants. Our team work hard to use this information to tailor individual programs within the overall group program. We are deeply sorry if you felt that your individual needs were not adequately met during your treatment.

I would encourage you to contact the CAHS Consumer Engagement team on (08) 6456 0032 or at CAHSFeedback@health.wa.gov.au to discuss your concerns in greater detail. Please know that the PACE team did their very best to provide you with customised pain management at the time, and I am truly sorry you feel this was not the case.

Yours sincerely,

Prof. Tim Jones

Co-Director – Medicine

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