By Tim Michael
Many people living with chronic pain want access to medicinal cannabis to be simpler andmore affordable, with 32% of people speaking to their GP about accessing the treatment.
They were the key findings of Chronic Pain Australia’s annual National Pain Week survey conducted in conjunction with National Pain Week held this week.
“What we are hearing from people living with pain is that they want to know more about medicinal cannabis but they are facing a range of hurdles when it comes to accessing treatment,” says pharmacist Jarrod McMaugh, National President of Chronic Pain Australia.
This includes a complicated approval process and prohibitive costs.
Survey respondents said approval can be at the will of the specific doctor you are seeing.
And in many cases, it depends on the doctor’s attitude toward medicinal cannabis.
“What we are hearing very clearly is that they feel there is stigma being attributed to medicinal cannabis which is not necessarily placed on other treatment options,” said McMaugh.
Chronic Pain Australia would like to see medicinal cannabis treated in the same way as any other legal treatment option, he said.
It should be subject to the same regulatory standards and evidence as all other medications used in the treatment of pain.
Community education is vital
“Barriers such as regulatory burden, stigma, lack of investment in research, and low uptake of opportunities for professional education by health professionals need to be overcome to ensure that everything is being done to better the quality of life of people in pain,” said McMaugh.
“Community education is also an important part of the process.”
Almost 68% of respondents wanted to gain more knowledge about the science behind medicinal cannabis.
Chronic Pain Australia is planning more public education sessions on medicinal cannabis for consumers throughout Australia later this year.
The survey also showed that people living with chronic pain continue to face high levels of stigma and can suffer from the invisibility of their illness.
The frustrations of living with chronic pain
A common theme with successive National Pain Surveys has been the constant struggle many chronic pain sufferers have in trying to hold their life together.
“The frustration of not getting a definitive diagnosis or inability to find a suitable treatment, the impact on a person’s ability to work, financial pressures, feeling judged or not being believed by doctors, colleagues or loved ones,” said McMaugh.
The burden of not being believed was strongly reiterated in the survey responses. This highlights how it compounds peoples’ feelings of helplessness and hopelessness.
“All too often this leads to isolation, mental health issues and a declining ability to effectively manage pain – an extremely vicious and heart-breaking cycle.”
Only 14% of respondents of the survey were men, a low result for the second year in a row.
“We certainly feel this is a group that the health community, including Chronic Pain Australia, needs to engage and communicate with better,” McMaugh said. “This will be a key focus of ours over the next year.”
“If men don’t participate in this process, we may end up with a pain management system that hasn’t included the needs and wishes of half the population.”
Many respondents said they want to minimise their use of medication. This is due mainly to unwanted side effects.
But this requires the support of a multidisciplinary team, which is commonly out of their reach.
“Whilst the majority of respondents utilise a range of allied health professionals to help manage their pain, 84% do not find them affordable and 96% felt the government should provide support in the form of a partial or full rebate,” says Mr McMaugh.
“On the other hand, responses to the survey also tell us that medication regularly plays a very necessary part of person’s treatment plan, yet people living in pain are all too often labelled as drug seekers for requiring assistance to simply get out of bed in the morning.”
The theme for this year’s National Pain Week is Equal Partners in My Healthcare to highlight the need for people with chronic pain to be included in the decisions and policies that affect their lives.
“What people in pain are telling us very strongly is they want to be at the centre of their healthcare and pain management plans,” said McMaugh.
“They want to be seen as an equal partner by the healthcare professionals treating them, which includes accepting and understanding that they are the experts in their body and their pain.
“While people in pain can learn and benefit from healthcare professionals, so too can healthcare professionals benefit from hearing and really understanding the lived experience of the person they are treating.”
People in pain need partnerships based on mutual respect
Chronic Pain Australia has found that when a person’s pain is managed to allow them to work and participate in everyday activities, it is because they have a good working relationship with their GP, their pharmacist, and their allied health care providers.
“People in pain don't want to manage their pain alone, but they need partnerships that are based on mutual respect,” McMaugh said.
“Chronic Pain Australia is committed to working with government, consumers and the allied health sector to explore how allied health treatments for pain can be more affordable.
“We will be also working with pharmacy and general practice to better assist their professions to understand the pain journey.
“Managing pain is not straightforward and a person may require a range of different treatments to manage their pain in the best way.
“What might work for one person will not necessarily work for the next. The experience of pain can change from day to day and can be complicated by psychological and emotional factors.
“We need to listen to people living with pain, take their concerns seriously and ensure they are involved in the decisions that can so dramatically affect their lives.”
Share your experiences
During National Pain Week, people living with chronic pain are encouraged to share their experiences and ideas on the chronic pain forum or on social media using the hashtags #NPW2019, #nationalpainweek, #equalpartnersinhealthcare.
Leaders in the medical and political communities are also encouraged to support the initiative using the hashtags and are encouraged to engage with Chronic Pain Australia and its members to develop a better understanding of their condition.
National Pain Week Events – Get involved
WHAT: National Pain Week
WHEN: Monday 22 July to Sunday 28 July 2019
People living with chronic pain:
Of the more than 1,200 respondents:
The full survey and Chronic Pain Australia’s position statement on medicinal cannabis can be accessed here
Chronic pain – pain that doesn’t go away after the injury or illness has resolved and lasts at least three months – is arguably Australia and the world’s fastest growing medical condition and is a significant issue affecting Australians.