Policy around chronic pain must be strongly influenced by the voices of those who matter most – those living with chronic pain themselves
AJP spoke to Jarrod McMaugh, Melbourne community pharmacy owner and the new president of Chronic Pain Australia, about the importance of listening to people living with chronic pain.
Mr McMaugh, who was elected to the position last year, told the AJP that a key objective as president of the organisation is to represent the concerns of people who live with pain, and ensure that these concerns are Chronic Pain Australia’s concerns.
“As the voice of people living with pain, Chronic Pain Australia must be present whenever the interests of people in pain are discussed,” he says.
“Further to this, Chronic Pain Australia has an objective to improve access to evidenced-based care. This means advocating for improved funding in areas where the evidence exists, and advocating for clarity where evidence is still considered incomplete.”
A prime example of this latter is medicinal cannabis,” he says.
“Too often we hear that medicinal cannabis might have promise, but the evidence isn’t clear yet.
“This kind of narrative has gone on long enough, and wherever there is doubt as to the application of a treatment or therapy that might help people manage their pain, we will be advocating for better, focused, high quality research that can help bring the issue to a point of clarity.
“Whether this demonstrates that a therapy is useful, or that it is not, is secondary to the need for clarity – we want to see an end to people experiencing false hopes for treatments that aren’t going to be effective, and we want to see barriers removed from treatments that will improve outcomes and quality of life.”
Mr McMaugh says his involvement with several health advocacy groups and charities has highlighted to him a similar theme: representation for people who have a lived experience, and ensuring that they have a voice when policy is developed.
“I’ve noted for a long time that many prominent advocacy groups are made up of various stakeholders, but the voice of those people who should be represented by these groups is usually not the primary voice—it’s one amongst many,” he says.
“Chronic Pain Australia develops their position from the views of people who live with chronic pain.
“Chronic Pain Australia has an active member forum that provides constant feedback on issues affecting people who live with pain. This feedback culminates with the National Pain Survey—which receives thousands of responses each year—and guides the development of our advocacy and policy work, ensuring that this is always the core of our work.
“This is why Chronic Pain Australia took the position that schedule change for codeine was not in the best interest of people in pain, because people who are actually experiencing significant pain every day made it very clear that they did not feel this was in their best interest.”
Making better use of pharmacists
The only people who actually manage chronic pain are people who experience chronic pain, Mr McMaugh says.
“Everyone else has a supportive role. For pharmacists, this involves providing education and advice on treatment options and how medicines (regardless of indication) may impact on a person’s pain or their capacity to live their life in the manner of their choosing.
“It is vitally important that all health professionals live up to this supportive role, and aren’t falling in to bad habits that lead to paternalistic lecturing or judgements.
“Stigma is a big issue for people living with pain, as it is with many other chronic conditions, and pharmacists have an obligation to ensure that their interactions with people in pain don’t create or perpetuate stigma.”
He says that pharmacists could be better utilised in all areas where medicines are used.
“From my clinical experience, I see a lot of instances where medicines are a primary concern for error or misadventure, yet a pharmacist is not funded to contribute their expertise. Examples include when a person transitions from one care setting to another (hospital admission and discharge, for instance), nursing or aged care facilities, GP clinics, Aboriginal Community Controlled Health Organisation, or other settings where medicines are used or discussed.
“This is a broader issue than chronic pain, and the Pharmaceutical Society of Australia is highlighting this need for pharmacist involvement in all areas of medicines use in their Pharmacists 2023 document.
“Specifically in the areas of chronic pain, pharmacists can be better utilised in care teams as educators and coordinators of care, not only with regards to a person’s pain, but overall health in general.
“We know that pharmacists are the most accessible health professional – not just because of where they are located, but also due to their skill in being able to talk to people as equals and without jargon.
“We also know that people with a chronic condition will spend the majority of their time with General Practitioners and Specialists focusing on their primary health concerns, which can mean new health considerations may appear seemingly out of nowhere.
“When a person is seeing a pharmacist for medicines, this creates an opportunity to ask about other health matters, keeping these issues front of mind with the person in pain so they don’t slip through the cracks.
“After all, a person in pain is still a person—they aren’t ‘chronic pain’ and still have the same risks as everyone else to develop chronic conditions.”
Mr McMaugh told the AJP that pharmacists can also be better utilised in Pain Medicine stewardship.
He said the SHPA recently highlighted that people with short-term or acute pain issues are being discharged with far more doses of pain medicines than are probably necessary, without adequate guidance on when to cease or review.
“This can have a significant impact on a person’s life if they are inadvertently exposed to dependence that could have been avoided,” he warns.
“Conversely, people with chronic pain have experienced under-utilisation of treatments (medicines and other therapies) that can lead to periods of untreated pain, lack of engagement, loss of productivity, and escalation in medicines used in an attempt to achieve analgesia.”
Mr McMaugh says he hopes health professionals and people with pain alike see Chronic Pain MedsChecks for what they are: a funded service that focuses on assisting a person in pain to access detailed information about their current treatments and options for treatment.
“In my opinion, the language used around the Chronic Pain Medscheck has been poorly chosen,” he adds.
“Of significance is the word ‘manage’.
“A MedsCheck isn’t about managing a person or their condition or their medications (regardless of the type of MedsCheck provided)—it is an opportunity to provide expert advice, while listening to an expert in the lived experience of a condition (ie the person in pain!) talk about their experiences and expectations.
“It is also an opportunity to optimise treatment by providing feedback and listening to how treatment is being utilised. Basically, the Pain MedsCheck is an instance of focused collaboration between a pharmacist and a person with chronic pain that allows for both to learn from each other.”
Ultimately, it’s people living with chronic pain whose voices must be heard, he says.
“My perspective is that people who live with chronic pain must be involved and represented in decisions made about chronic pain, whether it be treatment availability, funding of services, access to new and emerging treatments, development of evidence around existing and new treatments, and recognition of pain as a unique condition, rather than a symptom.
“All health professionals and people who make decisions about public policy should have this same perspective.
“This shouldn’t be a revolutionary idea, but sometimes I think people lose sight of it.”