Woman feels abandoned by WA health system amid year-long chronic pain battle
Jayde Guest spends most evenings in extreme pain.
For almost a year, the mother of two from Esperance, 700 kilometres south-east of Perth, has barely been able to work or socialise.
She feels as though her life has been stripped of all its best parts.
"I'm at the end of my tether right now.
"Day-to-day life is a real challenge."
While she has turned to Western Australia's health system numerous times for help, she said the process had only compounded her suffering.
The pain, which "feels like her chest wall is caving in", arrived out of the blue on a normal winter's morning.
It has returned each day since, intensifying the more active she is and often becoming unbearable by night.
Her doctor's first suspicion was cancer, as she had been in remission from an aggressive form called osteosarcoma for about 20 years.
But the medical system was at a loss when tests ruled out cancer.
She made the journey to Perth, seeing five different specialists on separate occasions, none of whom could produce the answers she sought.
Ms Guest said she was then twice rejected from the WA Health Department's central referral service — designed to triage and allocate cases — and the hospital stopped calling her back.
"I [was] in the too-hard basket," she said.
Ms Guest said she turned to support groups on social media and sought out experts in London, America, Melbourne and Sydney.
Finally, she found someone who might have an answer to her pain.
During her previous bone cancer battle, she had five ribs removed and replaced with a Gore-Tex mesh.
A doctor in Sydney believes the 20-year-old mesh is now shrinking and pulling against her chest wall.
The doctor, who specialises in mesh removal, told Ms Guest they were confident of being able to remove hers but is still working out how to rebuild her chest wall.
Ms Guest is relieved to have a way forward, but the wait continues as they work on a solution.
She said the uncertainty of her experience felt harder than the 16 rounds of chemotherapy she endured in her 20s.
"The lack of communication from the medical system has been really disappointing," she said.
"And I think that's what makes people feel really alone.
Clare Mullen, executive director at WA's Health Consumers Council, said experiences like Ms Guest's happened "too often".
But Ms Mullen said cases involving regional patients and chronic pain could be particularly difficult.
She said this was due to the disconnect between country GPs and metropolitan health professionals and the scepticism that could follow chronic pain.
"Unfortunately, it's one of the areas where we see a lot of people having to convince the clinicians … that their pain is real."
Ms Mullen said anyone feeling like their case was not progressing or who had been rejected from the service should contact the GP who made their first referral.
"It's not ideal, particularly in a case like this [where] someone is living with chronic pain," she said.
"It's a time-consuming process."
Ms Mullen said if they still had no luck, they should contact the Health Consumers Council.
Monika Boogs, chief executive of Pain Australia, said the number of Australians suffering chronic pain was about 3.7 million and growing.
But Ms Boogs said there were only about 200 pain specialists in the country, with access proving particularly difficult for regional residents.
She said a national action plan for pain management was done six years ago, but many programs were still unfunded.
"Pain is like mental health was 20 years ago. It's something that's growing. It's impacting so many people," she said.
WA Health Minister Meredith Hammat said the health system aimed to provide world-class care to all West Australians.
"We will never stop working to advance the care our health system provides," she said.
A WA Health spokesperson said initiatives were in progress to improve access to public specialist outpatient services.
To help others, Ms Guest started blogging about her experience.
She said she was a big believer in documenting experiences and helping others to advocate within the medical system.
"By me sharing it, I've had people open up to me and hopefully I've helped them to see that they're not alone.
"And Facebook groups, as much as they can be a little bit negative sometimes, I've found some great people and great friends going through similar things to me.
"And that's definitely helped."
Ms Guest said it also kept her sane, as the wait for a cure continued.
"I think it's hard for people to understand because I look kind of normal, I don't walk around going, 'Oh, my gosh, I'm in so much pain.'
"I just have to carry on."
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Woman feels abandoned by WA health system amid year-long chronic pain battle
Jayde Guest spends most evenings in extreme pain. For almost a year, the mother of two from Esperance, 700 kilometres south-east of Perth, has barely been able to work or socialise. She feels as though her life has been stripped of all its best parts. "I'm at the end of my tether right now. "Day-to-day life is a real challenge." While she has turned to Western Australia's health system numerous times for help, she said the process had only compounded her suffering. The pain, which "feels like her chest wall is caving in", arrived out of the blue on a normal winter's morning. It has returned each day since, intensifying the more active she is and often becoming unbearable by night. Her doctor's first suspicion was cancer, as she had been in remission from an aggressive form called osteosarcoma for about 20 years. But the medical system was at a loss when tests ruled out cancer. She made the journey to Perth, seeing five different specialists on separate occasions, none of whom could produce the answers she sought. Ms Guest said she was then twice rejected from the WA Health Department's central referral service — designed to triage and allocate cases — and the hospital stopped calling her back. "I [was] in the too-hard basket," she said. Ms Guest said she turned to support groups on social media and sought out experts in London, America, Melbourne and Sydney. Finally, she found someone who might have an answer to her pain. During her previous bone cancer battle, she had five ribs removed and replaced with a Gore-Tex mesh. A doctor in Sydney believes the 20-year-old mesh is now shrinking and pulling against her chest wall. The doctor, who specialises in mesh removal, told Ms Guest they were confident of being able to remove hers but is still working out how to rebuild her chest wall. Ms Guest is relieved to have a way forward, but the wait continues as they work on a solution. She said the uncertainty of her experience felt harder than the 16 rounds of chemotherapy she endured in her 20s. "The lack of communication from the medical system has been really disappointing," she said. "And I think that's what makes people feel really alone. Clare Mullen, executive director at WA's Health Consumers Council, said experiences like Ms Guest's happened "too often". But Ms Mullen said cases involving regional patients and chronic pain could be particularly difficult. She said this was due to the disconnect between country GPs and metropolitan health professionals and the scepticism that could follow chronic pain. "Unfortunately, it's one of the areas where we see a lot of people having to convince the clinicians … that their pain is real." Ms Mullen said anyone feeling like their case was not progressing or who had been rejected from the service should contact the GP who made their first referral. "It's not ideal, particularly in a case like this [where] someone is living with chronic pain," she said. "It's a time-consuming process." Ms Mullen said if they still had no luck, they should contact the Health Consumers Council. Monika Boogs, chief executive of Pain Australia, said the number of Australians suffering chronic pain was about 3.7 million and growing. But Ms Boogs said there were only about 200 pain specialists in the country, with access proving particularly difficult for regional residents. She said a national action plan for pain management was done six years ago, but many programs were still unfunded. "Pain is like mental health was 20 years ago. It's something that's growing. It's impacting so many people," she said. WA Health Minister Meredith Hammat said the health system aimed to provide world-class care to all West Australians. "We will never stop working to advance the care our health system provides," she said. A WA Health spokesperson said initiatives were in progress to improve access to public specialist outpatient services. To help others, Ms Guest started blogging about her experience. She said she was a big believer in documenting experiences and helping others to advocate within the medical system. "By me sharing it, I've had people open up to me and hopefully I've helped them to see that they're not alone. "And Facebook groups, as much as they can be a little bit negative sometimes, I've found some great people and great friends going through similar things to me. "And that's definitely helped." Ms Guest said it also kept her sane, as the wait for a cure continued. "I think it's hard for people to understand because I look kind of normal, I don't walk around going, 'Oh, my gosh, I'm in so much pain.' "I just have to carry on."
