Sammi: Good evening everybody and welcome to this evening’s Providing Quality Care for People who use Illicit Drugs webinar. We are joined by our presenters tonight, Ms Annie Madden and Dr Rob Page, and my name is Samantha and I will be your host.
Before we jump in I would like to make an Acknowledgement of Country. We recognise the traditional custodians of the land and sea on which we live and work and we pay our respects to Elders past and present.
Okay, so I would like to now formally introduce our presenters this evening. So firstly we are joined by Ms Annie Madden. Annie for over 30 years has represented people who use and have used illicit drugs at the highest levels within Australia and globally. She has provided technical expertise to UNODC, WHO and UNAIDS, and has been a member of the Australian Government delegations to the UN General Assembly. Until April 2016, Annie was CEO of the Australian Injecting and Illicit Drug Users League for 16 years, and CEO of the New South Wales Users and AIDS Association, NUAA, who are very grateful to have partnered with on this webinar this evening from 1994 to 2000. She is also a founding member and a current board member of Harm Reduction Australia. She is well-published and held numerous high level appointments and is an inductee into the Prime Minister’s Honour Roll for Service to the AOD Sector in Australia. Annie is currently a PhD scholar at the Centre for Social Research in Health at the University of New South Wales, undertaking doctoral research into drug user representation in high level policy contexts. In 2019, Annie was made an Officer of the Order of Australia for her decades of work and dedication to promoting the health and human rights of people who use drugs globally. So welcome, Annie.
And secondly, but certainly not least, we are joined by Dr Rob Page. Rob is a Sydney based GP who has been working in various rural and urban settings in New South Wales for more than a decade. Over the past six years, his work has focussed largely on providing quality healthcare to marginalised populations. He has a keen interest in general practice and addiction medicine, hold post grad qualifications in Public Health and is currently working towards Fellowship of the Australian Chapter of Addiction Medicine. So welcome, Rob.
Rob: Thanks very much.
Sammi: Alrighty. I will just take you through our learning outcomes quickly before we jump into the content. So tonight we would like to hope that by the end of the session you will be able to utilise effective engagement and communication skills in relation to patients who use illicit drugs, recognise and actively address the key barriers to accessing primary healthcare for people who use illicit drugs, refer patients who use illicit drugs to appropriate AOD and / or peer-based programs and apply an evidence-based harm reduction approach and risk-benefit analysis when assessing patients who use illicit drugs. So we will work through those and we will come back to them at the end to recap what we have learnt. And I would now like to hand over to Annie to get us started.
Annie: Thanks, Sammi. Good evening, everyone. As has been said, my name is Annie Madden. I am a peer consultant and facilitator. I am presenting on behalf of NUAA this evening and I am going to be focussing on creating better access to primary care for people who use drugs and with a particular emphasis on barriers and facilitators to care. Just before I get into those issues though, I just want to briefly talk about who NUAA is. NUAA is the New South Wales Users and AIDS Association. It is a state-wide peer-based drug user’s organisation which has been funded continuously by the New South Wales Ministry of Health for over 30 years. Its primary aim is to promote and protect the health and human rights of people who use drugs in New South Wales. It is a really important and unique organisation, largely because it is staffed, led and governed by people who have direct lived experience of alcohol and other drug use issues. NUAA is a really important part of the New South Wales Government investment in AOD and harm reduction policies and programs. And they deliver a range of holistic and peer-based services. And I would just say that part of the reason that NUAA has asked me to present on their behalf in these trainings is because I also come from a background of lived experience of drug and alcohol issues. And that has informed my approach to the presentation this evening.
So, what are some of the key barriers to healthcare for people who use illicit drugs? Unfortunately, the bad news is that there are many, many barriers to healthcare for people using illicit drugs and indeed, way too many for me to really get into talking about all of them in detail here tonight. But what I can say, is that there is a large and growing literature that identifies stigma and discrimination as one of the key barriers, if not the key barrier to health access for people who use illicit drugs, particularly when it comes to accessing alcohol and other drug services. Indeed, research has found stigma to be a fundamental social cause of health inequalities and further, it has been shown to worsen stress, reinforce differences in socioeconomic status, delay or impede help-seeking and lead to premature termination of treatment. Now as you can appreciate, any one of those would probably act as a significant barrier to most people accessing health care. But when you think of all of those combined together, you can see how people who use illicit drugs have significant challenges when it comes to accessing quality healthcare.
So, what is stigma? Well, stigma has been described as “the thought”. So ongoing negative thoughts, beliefs, attitudes and importantly, labelling that causes problems and creates what are called a spoiled or discredited identity in the eyes of society. So we know the terms, you know, the dirty junkie, the druggie, the drug addict, the thieving drug addict. All those kinds of labels that get applied to people discredit them in the eyes of society. Stigma is the thought. Discrimination is the action. So that is the act of treating someone differently, generally unfairly, to other people in the same or similar situation based on an irrelevant characteristic or characteristics. Now, upwards of 50% of people who use drugs who have been respondents in a national survey that was done by AIVL in 2015, reported experiencing discrimination by medical professionals. There are laws which prevent discrimination based on a number of grounds, including race, religion, gender and sexuality, but unfortunately, there are no laws preventing discrimination against people who use drugs.
Now, I guess one of the things to say about all of this is that often service providers can be very unaware of the impact of their stigmatising attitudes or discriminatory view points and actions and the impacts they can have for people who use drugs. When AIVL did some market research in 2010, the members of the general public and health professionals both believed that drug-related stigma could be beneficial, in fact even positive, and people talked about it as serving a purpose. So saying, you know, stigma and discrimination, you know, it is good for them. Or it is good to be hard on them. Or you know, if we stigmatise and discriminate against drug users enough, they will not do it. They will not use drugs. But the reality is, that this simply is not true. There is actually no evidence to support that stigmatising people who use drugs works, and indeed we only need to look at the level of alcohol and other drug use and illicit drug use in society to know that despite the punitive responses, despite the criminalisation, despite all of the things we do, people continue to use illicit drugs. So, what it does do though, it results in riskier and more harmful drug use and it creates barriers to accessing care. Now, these attitudes and are operationalised in health services today, and in drug and alcohol services. And they look like things like restrictive rules and barriers on entering detox services. So getting people, requiring them to ring back every day for two months, just to show, demonstrate that they really do mean that they want to do treatment, that they are really committed enough. We would not do that with any other form of medical treatment but we do it in relation to drug users and detox. Randomised, routine urine drug screening when we do not have evidence or very little evidence of therapeutic benefit, but it is still used in a routine randomised way. Or punitive attitudes to methadone takeaways, even with people who have been on the program for a long time who are very stable and should be seeing some flexibility towards them. So, what I want to say at this point, is some of this can be really difficult to hear and I am not hear to just criticise you and be really hard on you. I know health services often do a fantastic job and people work really hard. But even the best services are not perfect and we can always do better and we are looking at this in the face of the evidence that says, this is a significant problem and we need to do better.
So what does discrimination look like in practice? It looks like differential treatment, unprofessional manner, refusing service, ignoring people or serving or seeing people last, putting them last on the list for a procedure because they might be a risk to other patients. Denying people access to appropriate diagnoses and treatment for a condition due to an assumption of drug-seeking behaviour. Focusing on health issues the patient has not raised, sometimes to the exclusion of the issue that the patient did present with. And also breaches of privacy and confidentiality. The sad reality is, that research shows consistently that upwards of 80% of people who use and inject drugs regularly say they experience negative stigmatising and discriminatory encounters in the health sector. Now we have a very short time for this presentation tonight, but I did just want to pause there and ask you to think about that. We are talking about healthcare here and the only reason that people present to healthcare is because they need help. Your help. And I think we can do better than treating people poorly and stigmatising and discriminating against them when they present for our help.
Research also shows that there are different forms of stigma. So there is public stigma, structural stigma and internalised or self-stigma. Now people who experience public and structural stigma often internalise those negative attitudes and labels and carry stigma with them as a consequence of people’s discriminatory actions. This has been called micro-aggressions. And these are the statements, actions or incidents that are usually direct, they are often subtle, they may be intentional or unintentional, but either way they amount to discrimination against members of a marginalised group such as people who use or inject drugs. And they are often small slights and insults and indignities that build up over time so that people who use drugs come to believe that any slight they experience is due to the fact that they have used or do use, illicit drugs. And you know, sometimes it will be said to people, oh it was just a small thing, it was not that big a deal, just get over it, move on. But if you can imagine these things building up over time, happening routinely all the time, it gets reinforced through that repeated exposure. And that repeated exposure means that people who use drugs expect to be treated unfairly and / or differently from non-drug using patients. They become hypervigilant and fearful about accessing services. Many people who use drugs believe that there will be negative repercussions if they make a complaint, but this is often the only form of redress that they have access to. So people who use drugs choose not to come forward, not to access complaints mechanisms even if they are available to them, and the silence around the problem of stigma and discrimination continues unchecked and largely undocumented. This becomes a real barrier to accessing services. People effectively just give up. They do not want to come forward. They are simply too fatigued to take that one more slight, that one more criticism if you like. So, this results in people who use drugs putting up with painful, debilitating and even life threatening conditions rather than coming forward to access healthcare. And indeed research has shown that particularly older drug users frequently say things like, I only go to the doctor if I really, really, have to as a kind of option of last resort. I think you know for healthcare, we really can do better than this.
What I have just described to you, is referred to as the stigma cycle and it is particularly relevant in healthcare settings and it acts as a major barrier to access. So stigma happening, stereotyped labels resulting in expectations and roles, limited opportunities and this gets internalised and reinforced and the cycle continues.
So on the more positive side, what are we going to do about this? What do we want to see? We want to see more person-centred accessible inclusive care, more honest, willing, open-minded health providers, build more trust, support and empathy with patients, use strength-based approaches and empowerment frameworks with patients. We want to see less generalising, sensationalising and trivialising of people’s issues. Less dehumanising and marginalising treatment, less pathologising of their conditions and less treating people like victims, children and without agency.
Finally, we want to challenge and end stigma. So this starts with an honest self-reflection and evaluation of service or practice and its policies and procedures, and having a genuine willingness to change. Exploring ways to ensure all people regardless of their background or their life experiences feel welcome and respected. Treating people for the medical issues they are seeking help for with the best available evidence-based responses. Seeking genuine patient engagement and building a strong therapeutic alliance based on trust, responsiveness and balancing the benefits of an approach to treatment against any potential risks. This is called a benefit to harm approach, and Rob is going to talk to you more about this. And it is about being aware of and referring to other services that exist to support people who use drugs and can help you in working with your patients who are using drugs, such as NUAA, NADA the Network of Alcohol and other Drug Agencies, and other community-based and specialist care services. At the end of the day, what we really need people to be doing is challenging stigmatising views and attitudes wherever and whenever you find them. And in this space, it is actions that matter the most. Thank you.
Sammi: Before we move on to Rob, I have got a question that has come through here, Annie that is on discrimination. The question has been asked, if stigma and discrimination have any effect on stopping people from taking drugs or trying drugs for the first time?
Annie: Thank you. As I sort of mentioned in the presentation, the evidence on this is quite clear. Although people may think that stigmatising people and discriminating against people might act as a deterrent, there is actually no evidence to say that actually works in real life, in practice. Indeed we do have evidence to the contrary of that. So despite drug users being treated very poorly in society I would argue they are treated probably as one of the most stigmatised groups in society currently. People still, large numbers of people still are using illicit drugs and chose to use illicit drugs for the first time. So I think you know, that is not the strategy. The strategy I would encourage is if you are wanting to work with people on preventing people from moving to drug use, or continuing to use drugs, is around information and education. Non-judgmental information and education that is factually correct and accurate and engaging people on their terms and in a respectful and open way. Get the conversation going, and providing information through organisations like NUAA, that is what I would say would be a vastly more effective way than seeking to stigmatise or discriminate against them. Rob did you have anything to add?
Rob: No, I think that is a really good response there, Annie. I mean yes, intellectually it kind of makes sense right, if you stigmatise against behaviour, you would think that that would deter people from that behaviour. But if we look at the fact that alcohol use for example amongst young people is falling. But if you look at almost 30% of adults under the age of 30 in Australia have used illicit drugs in the last 12 months, I mean that really shows that people are continuing to use drugs, to use illicit drugs, despite these behaviours being heavily marginalised. So I would say that is true, Annie.
Rob: Shall I proceed?
Excellent. So, g’day everyone I am Rob Page. I will be speaking about primary care for people who use illicit drugs, partly about the benefit to harm approach that Annie mentioned there and just building as well upon her discussion there around stigma. So, if we look at providing quality care for everyone, we need to look at providing quality care for people who use illicit drugs. Almost half of Australian adults have used illicit drugs at some point in their lifetime and 16% or so within the last 12 months so it is important that all of these people have quality care. If we provided people who use illicit drugs, or people with substance use disorders rather, with good quality care, then we know that that does, especially if it is integrated with AOD treatment, lead to increased remission of substance use disorder which is generally beneficial. If we just screen for illicit drug use and combine that with brief interventions, this generally has a positive impact on substance use and problematic substance use, but also improves general physical and psychological health amongst people who use illicit drugs. And the really important thing to note is just that those people who have substance use disorders, whether it be regarding alcohol or illicit substances, they do have increased rates of morbidity and of mortality. They die younger and they have higher rates of high blood pressure, cancer, cardiac disease and lung disease. So, there is a greater burden of morbidity out there and it is important that these people are taken care of. We also want to make sure though that people’s needs are met. I mean, a large part of quality care is meeting people where they are, and the majority of people who use drugs would rather see their GP, not just for primary care but also for education around drug-use associated conditions, around withdrawal management also known as detoxification and maintenance prescribing, and for harm reduction advice. And at the very least I would argue if people do not feel comfortable providing that sort of advice either learning a bit about it or referring people on to people who do know about this stuff, such as peer services or specialist services. In many areas of Australia though, people just do not have a choice. There is a long waiting list for specialist addiction medicine care and people need to get their care in a primary setting. They just do not have any other options and it is not reasonable for doctors to say, oh look, I do not see people who use drugs. I do not see druggies or junkies.
We want to make sure that our care does avoid stigma and discrimination for the reasons that Annie mentioned, but also and if you have a look at the references there, there is clear evidence that this type of stigma does have a detrimental effect on the psychological well-being of people who use drugs. And the substance use stigma, just in the drug setting is likely to have sort of the counterintuitive effect in that it leads to poorer rates of completion of substance use treatment, leads to delayed recovery and it does generally lead to increased risk behaviour and things like increased overdoses, increased needle sharing, blood-borne infections and it obviously does then lead to poorer mental and physical health.
If we can provide quality care for people who use drugs, then this not only involves looking after the individual, but ideally we want to have some kind of community engagement as well, whether that be engaging them around the NDIS or getting sort of case workers involved in their care. Or getting other family members in, that might be their sort of children, providing good care for their children, other people in the home, friends. Because we know that substance use disorder does increase the risk of disrupted family and social relationships and other social dysfunction, and so then if we can build upon a person’s resilience, build up their social and community support, they are likely to do better and we would generally expect that their problematic substance use issues would improve through that.
I have already mentioned a couple of these statistics, but as I said, many people in Australia use illicit drugs. So the most recent National Household Drug Survey was in 2016. The 2019 one should be out fairly soon. But that shows that over 40% of Australian adults have used illicit drugs in their lifetime. Now most of that is cannabis. 10% of Australian adults have used cannabis in the last 12 months. Some rates of illicit drug use have fallen and so the things that you do not see very often like hallucinogens, LSD or magic mushrooms, synthetic cannabinoids. People are often surprised by seeing that methamphetamine rates of use decreased after 2016 and are probably at least stable since 2016. Everyone talks about the ice epidemic, but the fact is that rates of methamphetamine use overall have absolutely fallen, it is just the proportion of people using crystal methamphetamine which is more pure as opposed to powdered methamphetamine, which is speed, the proportion of crystal has increased over that time. And we also have seen, this is particularly relevant to New South Wales, that cocaine use has increased over the last 15 years or so. It is the second most commonly used illegal drug after cannabis and particularly in Sydney, its rates of use have definitely increased.
Of those people who are using illicit drugs though, not all of them would I suppose be described as having “problematic” substance use. We have got these people who have got mild to moderate substance use, or severe substance use disorder, which are by definition causing psychological or physical harms and are problematic. But for those people who have fewer issues around their drug use, people might not even be aware that those people are using drugs. And in the primary care setting in particular, you might never find out about these things unless you ask about them. But it is absolutely vital that I think every adult and probably almost all adolescents as well is screening, because if you detect those mild, moderate, severe substance use disorders, you can engage them in care or refer them to a specialist services. But if you find out about those less problematic forms of drug use, you can speak with those people and undertake brief interventions which absolutely help to decrease rates of problematic substance use or to reduce the harms around drug use, and ensure that if people continue to take drugs, they are doing so in ways that are less risky and less likely to cause harms.
If we are providing this care in general practice, I mean primary care is general practice, it is the provision of integrated, accessible health care services by clinicians in the community, and developing a sustainable relationship with patients. The good thing about that is, in Australia in particular, we have this really high quality care that we can provide. We are experts. We are specialists in general practice. And so patients get access to that through us. They get this ready, low cost or no cost access to immediate care. I think more than 80% of Australian GPs bulk bill. So the vast majority of people do not have to pay to access care. And this allows these linkages to specialist care and other health disciplines. And if we are asking people around these issues, even if we might not have detected in the first instance that they had used illicit drugs or had used alcohol or other drugs in problematic ways. If we are asking them about it, engaging them in the conversation, we can widen the focus of their goals. They might come in wanting treatment for their diabetes of their blood pressure, but if we show that we are knowledgeable or acknowledge these as issues, it might allow them to speak more openly about it, and start to address these issues as well.
If you are engaging well, this builds trust. And it facilitates initiation of certain, effective interventions, in particular things like brief interventions which I will speak to you about shortly, which certainly have good evidence for impacting people’s substance use behaviour. Harm reduction advice, such as prescribing things like naloxone if people use opioids, either prescribed or illicit opioids like heroin. Advice on safer injecting, such as using clean injecting equipment and getting screened for blood-borne infections. Motivational interviewing if you are trained in it can be extremely powerful and there is good evidence for effect. Management of low risk withdrawals in the community. There are a lot of resources out there and there are some resources attached at the end for these types of things. And for confident GPs or those who are happy to undertake further training, provision of things like methadone and buprenorphine in the community.
Here are a number of other things that engaging with people who use illicit drugs can achieve. And I think some of them are really valuable, in particular are they treating things like hepatitis C which I see, as someone who treats hepatitis C in the community, as very simple to do and I would encourage everyone to learn how to do it, or find someone close to you who is a champion who is happy to take people on board to screen for treatment of hepatitis C. Managing people’s other chronic illnesses. Because regardless of someone’s substance use choices, we are still managing their blood pressure, their diabetes, their heart disease. I mean, whatever someone’s choices might be around other things, they are likely to do better in the long term and it is really important to note that some people will decide to not address their substance use issues, but that does not mean that we need to I guess turf them. We still continue to engage them well, and overall provide them that comprehensive care and linking into other services. Because it is difficult to do these things on your own, particularly with more complex cases, as with any chronic illness. And so engaging other people in other services in care is absolutely vital.
If we are going to undertake things like brief interventions or motivational interviewing, this is I guess a brief synopsis of a brief intervention. That asking in the first place, universally asking when we ask about whether or not someone drinks alcohol and how many days they drink and how many drinks they have. Then asking about if they smoke tobacco. Then asking if they smoke anything else. Or if they have used any other drugs in the last 12 months. If they have used any other drugs in their life or have ever injected. They are not difficult questions to ask, and for the most people if they have never done those things, I do not know, have a bit of a laugh or are a bit surprised but are rarely offended. But if they have, people often really respect the fact that you are asking about these things. People know that they have impacts on their health, and it does just open that conversation up.
Assessing someone’s pattern of substance use from low risk or little to no risk of harm, all the way through to really problematic. Advising them around their substance use and assisting them at whatever stage they might be, and then arranging appropriate follow up or referral, with yourself or others.
And this is the benefit to harm approach that Annie mentioned before. There is an excellent paper on it here, because this really speaks about, if say someone comes in and you think that they might for whatever reason have used illicit drugs or have problematic substance use of some type. Either you know that through interactions you have had with them before or because of whatever other reason you might have. Immediately and I think that I am probably guilty of this as well from having managed people in Emergency Departments to in the community, who are “drug-seeking” or “doctor shopping.” Speaking with people you think, oh can I trust this person? Are they telling me the truth? Are they just chasing pills here? But that is one approach that many people start with and I guess it is very understandable.
Another framework, could you consider that a patient and a GP in this type of setting are adversarial or have offset goals. The patient is seeking as much as they can out of the interaction, as many pills as they can so they can take them or sell them, and the GP is aiming to prescribe as few pill as possible, so as little as possible and get the patient out, or use prescriptions as a bargaining chip to obtain other desired behaviours.
Another approach to take though, is I guess to consider, not I guess that person in themselves, but just each time that a patient might come in, each interaction, even be it the same person, on its merits based on what a person is coming in for. Assessing all of that case and all of that person then as well as you can I guess in that 15 to 30 minutes that you can. And assessing I guess the potential benefits of providing the person with what they want or what you think might be good for them, with the potential harms for that rather than I guess, just considering I have got to give this person as little as I can get away with. Just considering, look I mean, if someone is coming in with an injury to their ankle and they maybe have a history of problematic opioid use, giving someone a couple of tablets of oxycodone for pain relief if they might actually have relatively severe pain, what is the risk of doing that versus the potential benefit to that patient of feeling heard, humanised, and having their pain adequately treated? Just something to think about. Have a read through the article there as well. And I know that these situations are complex and I would just encourage you to think about them and talk about them and consider those issues of stigma and discrimination as well. Alright, I think that is my part up then.
Excellent. So I think we will probably come back to the questions at the end there. I can see there are a lot of comments but I will focus on these case studies.
So, we have got a couple of case studies here. But just to bring up some issues, I think Annie and I can talk through these perhaps. So the first one, I do not know if you want to read that one through, Annie?
Annie: Okay, so Mohammed, aged 31 years some in requesting hepatitis C treatment. He used to inject heroin when he was younger, but these days his main drug of choice is methamphetamine, which he uses a couple of times a month, and does not want or intend to stop in the near future. What should we do?
Rob: Yes, it is, I do not know, but it is the sort of situation I work in Darlinghurst and Kings Cross, I see this sort of situation relatively frequently. Different people will see this sort of thing from time to time or maybe not at all. It brings up a few questions I suppose. One is around someone who is injecting drugs who intends to continue to inject drugs and who has hepatitis C, and whether or not we should treat his hepatitis C. I mean he has got an ongoing risk factor to contracting it again. Hepatitis C treatment is expensive. It costs in the order of tens of thousands of dollars, it is an eight to 12 week tablet based treatment that honestly is relatively simple if someone is adhering to treatment. But we ask ourselves, do we want to treat this person’s hepatitis C? Is this person going to be able to get through it? Does he really want the treatment if he is continuing to inject drugs? And also, do we want to treat this person? I mean he is using meth. He is going to use drugs, like, does he actually care about his health? They are the types of issues that I think would probably come up in many people’s minds. Was there anything else at this point?
Annie: Yes, well look I think one of the central issues here is the decision around treating hepatitis C when someone is continuing to use. Some years ago, the criteria for treatment, would not have treated someone like this. This criteria has now changed and with the new treatments available, I would say that you would want to be treating this person for hepatitis C treatment. That they have come in requesting it. That in itself suggests the person is motivated to clear their hepatitis C. It is also an opportunity I would think to talk about safe injecting practices and harm reduction, and how Mohammed might stay hep C free post treatment. And who knows where that conversation could go in terms of other issues with his drug use or interventions as you say.
Rob: Absolutely, I mean obviously the other benefit, I mean it has been well-established through population modelling that if you treat these types of cases, people who continue to inject, this is what we need to do to get rid of hepatitis C in Australia, because the people who are continuing to inject, particularly if they are sharing injecting equipment, are going to be the ones who are going to be propagating hepatitis C further if we do not treat their hepatitis C. So, treating Mohammed and encouraging him to get his friends or his injecting partners in to get treated as well, you can treat sort of little clusters of people, networks of people and we really need to do this to stamp out hepatitis C. You are going to have benefits to Mohammed from both, he will be feeling heard and benefitting his physical health in the immediate and the long term, but there is also significant public health benefit. And also along the way, this continued engagement, the initial engagement around this drug use, taking his bloods, arranging the screen to see if he has got liver dysfunction, it means he is going to come back and you can continue to just have that conversation around, what are your feelings about the impact of methamphetamine on the brain in the long term? On your mood? On your anxiety? The long term impacts. On the initial approach, everyone hears from their doctors, you have got to stop using drugs because they are harmful. But if you are having a conversation every single time in a relatively gentle, thoughtful kind of way where you are listening in a non-judgmental way, eventually people do start to really hear what you are saying and hopefully think further about engaging in treatment and reducing their substance use.
Annie: Yes, and it opens the door as you say to a genuine therapeutic relationship and feeling heard and feeling like he can open up to you as the GP and see what might be able to be done in terms of his healthcare generally as well as any issues that he might have been very reluctant to raise. ‘
Rob: Absolutely. It is also important to remember referring these people to where they can do clean injecting in really sort of direct way, and in the resources at the end will talk about that so you will know exactly where to go. And also, ideally link in with peer services as well so that people can speak to others who have lived the experience and see I guess that it is worth engaging with that system and doing well.
Annie: I see just before we move on, Rob there is an issue there. I think it is a question around genotyping and different genotypes of hepatitis C. So now the new treatments are pangenotypic.
Rob: That is right. Yes, thankfully the treatments these days are honestly, they are really, really really simple. The majority of people, unless you have tried to treat hepatitis C in the past and had a treatment failure, you will put them on either one to three tablets between eight and 12 weeks and it does not matter what genotype you have got. If you have never been on hepatitis C treatment before, realistically you do not need to know someone’s genotype.
Sammi: And we have got a series of webinars on the RACGP website that are called Seek to Treat if you are interested in looking more into the pangenotypic drugs and the different genotypes. There is more information on that that can be found there.
Rob: I should note as well, that for Medicare purposes, you still need to check someone’s genotype. They expect that that will probably change in the next couple of years, but still do it. You will not be able to get treatment without it.
Annie: Okay. So we are moving onto the next one, a very different situation.
Rob: Shall I read this one out?
Annie: Yes, go for it.
Rob: Yes, so we have got Sarah here today. You have never met her before. She has come down from Townsville, she tells you and she is here to see her mother who is having surgery for breast cancer. She has come down, she has left all her medications at home. She left in a hurry. She was quite distraught. She explains to you that she is really worried. She came down in a rocky, emotional state. She tells you that she usually takes oxycodone extended release 20 mg twice a day and she wants a script just for 20 tablets, so just to cover the ten days that she is going to be in Sydney. She has got this chronic pain, radicular low back pain going down her left leg and it is always there, but at times she gets these flares where it is 8 or 9 out of 10 and it really troubles her. She is sort of buckled over with the pain and she is in tears. Do you want to speak to this one first, Annie?
Annie: Yes, well you know. I mean this I think would probably resonate with a lot of GPs.
Rob: A common case.
Annie: I think a good one to discuss. And I guess it is a really good one, Rob for the benefit to harm framework to come into play in terms of assessing what might be the benefits to prescribing her what she wants or something, you know, coming to an agreement around that. Or whether to just say, you know I cannot do anything to help you, sorry.
Rob: It is a really common type of case and it is the sort of case, I mean you get two or three minutes into the consultation and your heart sinks and you think this is going to be exhausting and stressful, and you will almost certainly leave the consultation dissatisfied and unhappy for one reason or another or the patient will. But I guess this just, I do not think there is a perfect answer to this case, because maybe everything she is telling you is entirely true. Maybe it is not and she wants to get oxycodone extended release from you so she can sell it on the street and make a neat little profit there. But I just encourage people to, rather than hearing the one or two minute introductory spiel from the patient and then sort of saying, no I do not prescribe Schedule 8 drugs to patients, get out of my consulting room, just to take, like I mean, I am not sure how long people generally have in their initial consultations, but ideally just to take a few minutes, talking through the issues with this person, letting that person feel heard. Because I think it is tremendously detrimental to have someone who may already, like many people who are on opioid pain medication prescribed for a long period of time have had negative interactions with the health system because of this type of situation, and if someone feels like they are being shut out of the room and potentially going to experience severe pain or go into opioid withdrawal within the next 24 hours because they are not able to access their pain medication, I just would encourage people to take the time to assess the patient or take the history, examine the patient, get in touch with the patient’s GP. Obviously, it is almost always 6 p.m. on a Friday when you are seeing this type of patient and that makes it even more challenging. But if you have the time, try to take it, try not to just sort of turf people as best as you can. And it might be that you say, look I am really sorry I do not give Schedule 8 drugs to people on their first visit. It might be that you say look, I mean until we establish more information around this situation I can give you 2 times 5 mg of oxycodone or 2 times 10 mg tablets. I am not sure that there is a perfect answer and obviously this is a very limited, potted history here. There is not enough information here to make a decision. But this I think just to me, really emphasises the importance of not just turning people away if they come in in these challenging situations. If this person lived in Sydney and was coming in similarly, it might be that you never give them a prescription but if you take the time, take the history, examine them, talk to them, explain that opioids for chronic non-cancer pain are not a good treatment. Take the time to do all of that in a thoughtful way. I will often find that those people will come back and appreciate you taking the time, rather than just turfing them out the door.
Annie: Yes. And what about things like you know, permission, talking to GPs, that sort of thing, would you?
Rob: Always, always. I mean you must get consent from a patient to speak to other clinicians about their care. So getting verbal or signed consent from a patient.
Annie: Would you do that in front of the patient?
Rob: Yes, I tell them.
Annie: Speak to their doctor in front of the patient?
Rob: Yes, like that is a good question. Sometimes I would not. Sometimes. It depends on the situation. Like ideally, I would get a written consent from the patient, fax it off and then phone their doctor and speak with the GP in front of the patient. If there is resistance from the patient to that, that is one of those things that would provide a red flag that this might not be an entirely kosha situation. So it is a good point that that is best practice, yes.
Annie: And someone has got a question here too, around where the doctor shopping hotline fits with stigma and discrimination.
Rob: And yes, I think that is a great question. I would definitely phone the doctor shopping hotline with this person, and whenever I am prescribing Schedule 4 and Schedule 8 drugs to someone that I do not know, or that I guess I am not entirely clear about the history. I would just say, look this is my standard practice. These medications are really tightly controlled and obviously you are not going to talk to this person, you are not going to show up because you get it from one prescriber in Townsville. This is standard practice through my standard of care.
Unfortunately, if someone has experienced stigma, that is probably going to make them feel a bit crap.
Annie: As we discussed, their reaction is probably, they are going to go into that sort of repeated sort of internalised stigma will make them ultra-vigilant.
Rob: Absolutely. I would argue that the benefit from a public health point of view and from the health system and being able to practice safely point of view, of doing that outweighs the potential for experiencing stigma in that situation. But I think others would argue against that and I just think it is important to consider these things when you are thinking about that.
Annie: Yes. Okay.
Rob: And someone has also mentioned the online medical records prescription monitoring system. It is absolutely vital for checking on these things. Doctor shopping online. I would categorise them all on the same sort of lines and I think that they are really valuable tools for assessing these sorts of cases.
Annie: Yes. Rather than making an assumption about people, base it on actual information.
Rob: Collect as much information as you can and then make a decision establishing benefits versus harms.
Annie: And you know, just to say on that, too, that there are documented cases unfortunately of deaths occurring when assumptions have been made about drug-seeking behaviour in serious situations where people have subsequently gone on to have very bad experiences and even there have been deaths. So it is really important I think to know where the information is and get as much as you can. This is a serious issue.
Rob: Yes, absolutely the cases that Annie is referencing are cases like sort of people with spinal tumours, people with a history of injecting drug use coming wanting pain relief for their severe back pain, being turfed out the door multiple times by multiple clinicians because they are drug-seekers wanting pain relief, and then subsequently having metastatic disease and dying because these things were not detected earlier. We really absolutely must avoid that.
Annie: Yes, and accessing all the information that is available to you. Great.
Alright, so then finally tonight what we are going to just move on to, is a resource that has been produced by NUAA and NADA which once again is the New South Wales Users and AIDS Association, and NADA is the Network of Alcohol and other Drug Agencies here in New South Wales, peak bodies for NGO treatment services. And they have developed this resource called “Language Matters.” Now it comes in a couple of formats. There is a sort of A4 type one. There is also a poster size. It is double sided but there is a poster size that you could potentially have in your clinic or your waiting room or wherever. One side sort of just gives you some alternatives around language, terms you could use instead of ones perhaps you might be using now or that you have heard. Just sort of giving you some ideas on how you might be able to sort of change things up to ensure that you are using sort of open and respectful language with people. Non-judgemental language. So you can take a look at that. And I have put up there where you can get the resources online, at the NUAA website as well, or you can contact NUAA and they will absolutely send copies of the resource to you. It has had really great feedback this resource, and I think people quite enjoy it and find it quite useful.
But what I am just going to take you through, I said it is a double sided resource. I am going to sort of focus on the second side or the back side. There is a kind of a set of about ten dot points that are about better practice or best practice guidelines. And so I am just going to take you through those, because I think they can be quite useful and might get you thinking about a few things around language. So, the first tip is not to define people by their drug use or their diagnosis. So that means sort of emphasising the person first. So, for example a person who uses drugs or a person living with hep C, not drug-user, ice-addict, meth-user, drug-addict, or I have also heard, he is HIV or she is hep C. People are not their diagnosis, they are living with a condition and we need to be careful of that. It is more empowering language for people.
Not imposing your language or values on others. So checking in with people about how they would prefer to be addressed or spoken to, and respect their views. One of the issues here and an example is, how people might be spoken about in referrals. If you are referring people to specialists and that sort of thing, writing letters about people, their background, their drug use history, you know their life, those sorts of things. Sometimes I have had very interesting surprises about what has been written about me. Sometimes not even necessarily negative but just not true from my perspective, but no one has actually asked me about that. So I think you know, these referrals can live on and they come out, particularly with drug users, you know, and they have stories of referrals coming back to bite them down the line where someone has said something about them.
Rob: Yes, I think on that as well, like people might self-refer in a variety of ways. People might call themselves junkies, or they might call themselves fags or they might call themselves like, I do not know, they might say oh yes I am pos or whatever. But it is really important that that not necessarily mean that that is how you refer to them, or that is how you refer to them in documentation, because reclaiming potentially stigmatising language for oneself is very different to a professional using it or even providing it in documentation. So just asking is always the best way.
Annie: Yes, I think so. And you know, terms that are strength-based and empowering. So you know, maybe not using things such as non-compliant, but instead, they chose not to, or they decided against something. So it emphasises agency, choice and preferences.
Be mindful of the implications of your language, of being accurate and precise. So, the example here is sort of, when people talk about doing drug screens and saying was it a dirty or clean urine drug screen instead of saying it was positive or negative for a particular substance. So being accurate and precise. And sort of further to that I guess, is to avoid saying things like such and such has a drug habit or is suffering from addiction. These things can be really disempowering for people and either trivialising or victimising them, or even just sensationalising their drug use.
Using language that is accessible, so not speaking above or assuming a person is understanding. I think it is really important to avoid and Rob sort of touched on this, you know avoiding slang and also medical jargon because it can be misinterpreted and cause confusion, particularly for people from CALD backgrounds or people for whom English is not their first language or there are literacy issues. It just is best to avoid using sort of slang and jargon in how you are talking to people.
Not making assumptions about a person’s identity, being inclusive. For example in terms of gender, neutral terms they or their, or just use the person’s name.
Be aware of the context of language. Rob has touched on this already. Some language is okay when it is used in a community to claim identity, but it is stigmatising when it is used by others.
Avoiding diminishing people. So your language should empower the person who is looking for help, not speaking to them like they are a child or pathologising them or treating them without agency.
And just remembering that we have talked about language here and words, but it is not just verbal communication. And a lot of your communication will be non-verbal. Your tone of voice, your body language. All of those things can equally demonstrate respect for the dignity and worth of all people as well as the words you choose. So just be mindful of communication generally.
Sammi: Wonderful. So now we have some time to take some questions. The first one I am going to come back to you, Rob, when you mentioned the NDIS we had a couple of questions through asking about the NDIS and obviously we know that there can be some problems in getting funds from the NDIS so we do not want to go into that too much now, but the question was asked and I am sure other people were thinking it as well, that they were not aware that alcohol and drug users were entitled for any NDIS services.
Rob: Yes, look as far as I am aware, that is the case. Unfortunately, if you ask me sort of chronic refractory relapsing, severe substance use disorder “does not count” from the point of view of disability for the NDIS. But this is from my point of view, more speaking to the fact that there is a large proportion of people who have moderate to severe substance use disorder, who have disabilities because they have psychological or psychiatric or physical health problems. And especially with that aging cohort of people who use illicit drugs, I mean in general the proportion of people using illicit drugs is getting older, we are likely to have more people who have a higher proportion of those illnesses who qualify through the NDIS for other issues, and then who can get support in a myriad of ways. Yes, I do not want to speak to much about the NDIS because, while it can be challenging for GPs to wade through all of the things we need to wade through, once patients get access to it, it really can be wonderful for them because they really can get access to so much good case management and so many resources. And that can help people a lot regardless of their choices around drug use.
Sammi: And this one I am going to come back to you, Annie. This one is not a question, it is a comment that was made and I am hoping that Rob’s benefit to harm assessment has partially helped this person. But the comment came through saying, there are two types of drug users. Some need help to be detoxified, which are the minority, but the majority are using the GP to have more drugs and causing trouble to GPs.
Annie: Well, right. I guess you know, probably the first thing to say is that like everyone in all groups in the community, people who use drugs come from a diverse range of backgrounds. There are kind of not two types of people. I think that you know, you will have a diversity of people like you will with any other patients that come to your practise. I think you know, it is really about as we said earlier, trying to sort of encourage open and thoughtful and non-judgemental communication with people, because sometimes what can appear to you on the surface on the first face of it as someone maybe you know, not being entirely honest with you or you know, perhaps drug-seeking type behaviour, what you define as that, when you actually you know, take the time to talk with them and open communication and trust and make them feel safe with you, there can be all sorts of issues that arise that you can have a very useful impact on with them as a GP. So I think rather than sort of making your mind up before you know, having an individual, treating every individual that comes before you as an individual and assessing that situation on its merits and keeping an open mind, and I would really encourage you. Sammi, you referred to the benefit to harm framework, I would really encourage the person who made the comment to have a look at the article with the link there, the police officer, deal maker, health provider article. It is a really great read and it does speak to these kinds of issues. It might actually help give you a framework for unpacking some of the experiences that you might be having with some patients. Do you have anything else to add, Rob?
Rob: Yes, I mean I would agree with Annie. I just really encourage people to try to avoid clustering people into sort of “drug users” and non-drug users.” I mean if you have got a behaviour that almost half the population has undertaken at some point in their life, like is it useful to consider that half the population are “drug users” and the other half are not. I am just not sure that it is useful and I would encourage people, clinicians to meet people where they are. I mean, people might have a history of illicit drug use, might never have used illicit drugs, might actively be using. But what is important is that impact on that person and their health and where they are at in terms of their engagement rather than whether or not they are a “drug user.”
Annie: I think so. And also, probably just there is some very good literature in the space around just the impact of the way we approach drug use in society, the way we deal with drugs in Australian society in itself can lead to all sorts of problems and issues for people and that can prevent them from sort of feeling that they can just be honest with doctors and all sorts of things. So there are often other issues going on in the background that can be really helpful to understand the context in which people come to you and what might be going on for them in their lives and why they might be reluctant you know, to speak about certain things, and that might help you get a more open conversation going on with them.
Sammi: Great. And there is a comment come through, a question sorry, regarding the doctor shopping hotline. Someone has commented that if the patient uses less than six prescribers in three months to get opioids, the shopper hotline will not catch them. Is there any methods that you can recommend outside of that that might be useful for GPs?
Rob: Yes, look I believe that in, and I may be corrected on this, but I know that Victoria and Tasmania at the very least were developing prescription monitoring systems. So I think in those states there are other options. In New South Wales, I mean yes, look outside of the doctor shopping hotline things are really limited and oftentimes, no, it is really tough. I would argue that there should be better monitoring of that sort of thing on a National level just to make it easier for general practitioners who are left in this situation with inadequate information upon which to make decisions. It makes it really tough for us. And also it does potentially make patients feel crap because they are feeling judged by us through the situation. So I am sorry, I wish there were but as far as I am aware, no not in this point of time in most states.
Annie: I think Queensland might also be doing a prescription monitoring following Victoria as well.
Sammi: Okay. And we had another one come through and this just comes back to something like the doctor shopping hotline. Obviously if they did not meet the criteria to go on there. This one is more of a comment and it refers back to our case study. One of our GPS online recently had a patient like Sarah who brought a paper of discharge letter, so the doctor had given a script of Endone and a few weeks later in a different surgery he came across another girl who showed the paper, but it was actually the same paper. So, I think that comes down to as Rob said, making best practice in situations where there might be red flags to, as Rob said contact their GP and if that is something that they are not wanting to do, that is a red flag for you to look a little closer.
Rob: Yes. Paperwork is rarely but it can be forged.
Annie: And I think one of the other issues I guess we have not touched on in this space, and “drug-seeking” behaviour, I think is just that there is you know, a chronic shortage of drug treatment in Australia and people, you know it is estimated that up to half of the people at any given time who would meet the criteria to access treatment, cannot get access to a treatment place.
Rob: You are talking about methadone, buprenorphine?
Annie: Yes, well yes. Substance use treatment generally. But there are waiting lists and there are you know, people who you know, want treatment. They really want treatment but cannot get access to it. We have limited treatment places. Some places it is better than others, but there are waiting lists and people are often travelling long distances for drug treatment. So I think there can be lots of reasons why people might be considering their options for how they get their needs met in ways that are not great for GPs and not great for the patients, but the system sort of you know, can encourage people to take matters into their own hands sometimes.
Rob: Yes. And if people find these systems frustrating and challenging or if they think there are better ways, I would encourage them to get in touch with folks like NUAA who is an excellent, really fantastic organisation to have those high level discussions about what can be done in this space, speaking to organisations who represent people who use drugs about this type of thing to see how we can address this better, because yes, there are a lot of challenges. And it makes our lives as GPs really, really difficult and often they are problems that we can solve, assistance problems.
Annie: Exactly yes, I hear you. Definitely contact NUAA about that.
Sammi: Yes. And we just had someone wanting to quickly confirm that yes, we do need patients’ consent to contact their regular GP.
Rob: That is my understanding. Yes, I believe in the case of emergency or where someone cannot give consent it is okay to, but otherwise I think you would be entering pretty sort of hairy waters if you phoning other clinicians without a patient’s consent.
Sammi: Yes, and I suppose in cases like this as well, there is an opportunity as well if they are saying, you know you cannot contact my GP, then that is a red flag.
Rob: Yes, exactly it is a red flag but it is also a reason to sort of say, look I am very sorry, but yes it is their right to say that, but it is also your right to decide what to do based on their decision.
Sammi: Awesome. That is our questions. We have got through them, so that is great. So we will wrap up now. On the next slide we have a review of our learning outcomes that we covered at the beginning. So we will just take you back through those really quickly. So, we are hoping now at the end of this activity you are feeling that you are more able to utilise effective engagement and communication skills in relation to patients who use illicit drugs, recognise and actively address the key barriers to assessing primary healthcare for people who use illicit drugs, refer patients who use illicit drugs to appropriate AOD and / or peer-based programs, and finally, apply evidence-based harm reduction approach and a risk-benefit analysis when assessing patients who use illicit drugs.
So, I would just like to again thank our presenters, Annie and Rob for joining us, and also to everybody who joined us online. We hope you enjoyed the session and we hope you enjoy the rest of your evening.