My favorite lesson about self-advocacy comes from the film Legally Blonde 2, when cute Reese Witherspoon gets snaps in the senate for a great extended metaphor around getting a bad haircut from a famous salon. She explains that by not communicating her wants and needs, by watching on silently as bad decisions were being made for her, she only had herself to blame. She punchlines: “I didn't participate in the process."
I love that scene. I love the advice more: it's your life, step up and shape it. Seize control! Take personal responsibility for getting good service.
Too often users feel powerless because we have so many agencies laying down so many rules for our behaviour. Everyone seems to think they can have an opinion about our lives (yes, Miranda Devine, I mean you). Being an active consumer starts simply by letting people know, calmly and directly, what we need and how we want to be treated. And if they don't listen, we get to tell someone who can help; we make a complaint.
There are four ways to complain effectively: anonymously in a service survey or to a service consumer representative; formally to the service at fault through their complaints process; formally to a specialist complaints body, like the Methadone Advice and Conciliation Service (MACS), the Health Care Complaints Commission (HCCC), the Anti-Discrimination Board and the Ombudsman; or through the political process - the right of all Australians. A consumer group like NUAA can help you tease out the issues and work out who to complain to.
When you complain in a constructive and effective way, you make things better not only for yourself, but for everyone else. You raise the bar for all of us.
A service will assume everything is okay unless we complain. In “real life", consumers vote with their feet. Unfortunately, it's not that easy for us, with few alternatives and long waiting lists. We can't walk, so we need to make it work better.
We often don't say anything because we assume a complaint is unwelcome, but this may not be the case. A service may need your evidence to discipline a staff member, hire more staff or change a process that isn't working. Our complaint can provide ammunition for change.
Alex Wodak once told me about the first customer satisfaction survey put in at Rankin Court pharmacotherapy clinic. At the time, the clinic was housed in a cramped, dirty old terrace that stank and leaked. Including a question on physical environment, Alex hoped to get evidence to pressure the hospital to move the unit to a better location. Except 80% of patients responded that the venue was just fine. They lost a chance to get a service improvement and sent a message that for users, horrible is good enough.
So if you're asked your opinion, don't hold back. Find out if your service has a consumer representative and who it is. If a service doesn't have a feedback route, complain about it until they do.
Most of the things people complain about relate to practice issues: the way a professional has behaved or the way rules have been interpreted. You deserve to be treated with respect and compassion. You deserve to be given the benefit of the doubt and not to be accused of wrongdoing without proof. You deserve to have your activities and details kept private. You deserve to be medicated if and when you need it, and not under- or over-dosed.
It is advisable to complain first to the service at fault; then, if you are not satisfied, go to a complaints body. The benefit of complaining to a complaints body is you get an objective opinion and can shine a spotlight on the issue by taking it to the attention of senior people in the field. Remember: “the personal is the political." In other words, if it is happening to you and you don't like it, the chances are it is a larger problem affecting other people.
Unfortunately, some things are just not fixable through a service's complaints process. If your chemist only offers methadone and you want Biodone, or your clinic has moved to Suboxone film and you want Subutex, maybe you have to change services. Likewise, you can't make a GP prescribe methadone or a chemist dose even though they can and should. Internal complaints services won't help here. But you can write a letter to the editor or go on A Current Affair. You can take up a petition, have a demonstration outside their business or get everyone to wear slogans on T-shirts saying “HIPPOCRATES WOULD ROLL IN HIS GRAVE!" You could even try suing the service. You can ask NUAA to take up those issues through their committee participation. Or you can write to Queen Elizabeth's public servants - our politicians - about it.
When something is wrong with the rules themselves, you need to complain to the rule makers. This sort of complaint needs to be kept personal and specific: talk about how the status quo makes life difficult for you and how changing it would make life better. Tell them that because they have spent the lion's share of money targeted for drug services on drug law enforcement, you were unable to access treatment when you needed it. Describe what happened in your life as a result. Say how your livelihood has been threatened due to ridiculous methadone takeaway rules. Talk about the overdose of a friend that could have been prevented through the provision of naloxone to peers.
Complaint is a dish best served cold. Losing your temper and swearing at someone is going to turn you into the problem, even if you are totally justified. It's best to step back, think logically, and get it on paper. It is important your complaint be courteous and reasonable. As my mother used to say, you get more ants with honey than vinegar.
It is always better to complain in writing. It packs more of a wallop; it can't be ignored or misinterpreted. If writing is not your strong suit, enlist a friend or family member to help, or ask NUAA. Hospitals, prisons and government departments will usually have a form designed to help you and are required provide support for language, disability or learning issues. One of the few exceptions to the writing rule is MACS, set up to take methadone complaints over the phone.
For best results, name yourself. If you are complaining about a person, they will usually get to read your complaint so they can give their side of the story. Don't be scared. If you are being bullied or singled out by a professional, your best protection is to make a formal complaint. It is very hard for people to get away with bad behaviour when they are being monitored.
Most importantly, be clear about what you want out of your complaint. If you have been treated badly, an apology is nice, but what you really want is for it to never happen again to you or anyone else. You need them to activate a plan for change to improve the dodgy aspect of the service. For example, you might ask for staff to be trained in being fair and equitable - you could suggest NUAA run a training session on how to work with us.
It is in our best interest to get along with the services and professionals who are treating us. Services are not ideal and are often under-funded and short-staffed. Things like queuing and waiting are part and parcel of life, especially in a big city. People are definitely far from perfect and everyone can have a bad day. But ongoing and serious breaches of behaviour, and obvious and institutionalised discrimination need to be addressed.
You owe it to yourself and to your peers to help services improve their game. If you think it's about time for drug policy and law reform, tell your local member and the Minister concerned. Or here's a thought: write an opinion piece for User's News! You'd be amazed who reads it.
Parliamentarians, be they champs, crooks or clowns, are the representatives of the people, your doors to the parliamentary process. It’s up to you to tell them what is important to you and why.
I truly believe most people in Parliament are there because they think they can make the world a better place. Many a slip between cup and lip, I know, but I think the majority start out passionate and authentic. So see what they can do for you. Educate them on your issue and harness them to work for you.
The best way to connect with them is to write a letter. In a letter, you can be clear about what you believe and what you want. No one can misrepresent you or wedge in words you don’t mean.
Ringing up or asking for a meeting doesn’t really work. Ministers just don’t have time and even if you get to see someone (an advisor, even your local MP) chances are they won’t know the issue and you won’t achieve anything. Better to write and get a considered response.
Many issues-based websites have e-petitions and/or ready-made draft letters you can customise. You fill in your details and click the letter off to the provided email address of one or more policy makers. This kind of activism is sometimes labelled “slack-tivism”; critics say it’s a lazy way of entering the protest process. But I think it’s efficient. The advantage with joining an e-based campaign is that you are part of a focussed offensive.
But there are times when you need to go it alone, make a personal mark on the world, tell your own story. So how do you do it?
First take a moment to think about where you are coming from and what you want to achieve. You’re angry, but you don’t want to swipe blindly; you want your whole weight behind what you do. That means saying what you mean and meaning what you say. It means picking the right person/s to say it to. And it means accessing all the tools of communication - style, tone, structure, argument, audience.
You want to use your letter to bring positive attention to your issue. So be a fine, upstanding representative for your cause. Be rational, keep on the topic and be courteous, following the knightly code of combat. Above all, be constructive. Make suggestions you think will work. And it’s a conservative world, so be moderate in approach so you can be feisty in substance.
Above all: DON’T WHINGE!! Whingers change nothing. Lots of people write to Ministers to whine that someone else (usually junkies, refugees and single mothers) is getting their share. This kind of letter is just letting off evil steam. It won’t be taken seriously, so don’t even bother.
If you want your letter to get a good reading, keep it short and to the point, just one page. It doesn’t make a difference if your letter is hand written or typed, posted or emailed.
Think in terms of four points:
Write it out then make it lean.
Work out the nub of the problem, the main thing that irks you. Read up on it, talk it out with your friends. So you know what is wrong. Now tease out your case. What evidence do you have for your position? You can quote facts and figures from your research (say where you got them from) or give examples from your personal experience. My partner died last year of a heroin overdose, a death that needn’t have happened if I had naloxone in the house.
Tell them why the issue might be important to them and to all Australians. It is worth finding out if the person you are writing to has some special interest in your issue. Labor has a vested interest in “social justice” and Liberal in “fairness”, so you can play to these core values at a pinch.
Then challenge them! Ask them for facts and figures or if they are familiar with how people are coping under the weight of the issue you are raising. You could ask a Minister to justify the government’s decisions in a certain area. You can ask for your representative’s position. You can ask for a progress report on activity or what the impediments are to the government moving forward on something.
Ask for something concrete, but make it achievable. You want a second MSIC in the west? Say so, but as a first stage ask for a report assessing the local situation. You want free methadone? Suggest investigating how the price of methadone delivery could be reduced. You want drugs to be legal? Ask that drug law reform be put on the Australian political agenda. You want more money spent on health and care and less on cops and customs? Ask for an inquiry into spending around drugs policy.
It can be useful to call a related group (like NUAA or AIVL) to get their take and ask about their campaigns. You don’t want to undermine a strategy already in place or suggest something naïve.
Once you know what you want, you can identify who can achieve your goals for you: federal, state or local government, or a mix. Read the newspaper, research the web or ring Parliament House to find the relevant Ministers and spokespersons. Sadly, drugs and alcohol get sidelined to a junior “Mental Health” Minister under the Health Minister both federally and at state level. There’s a letter in itself. Please write and ask why.
On the whole, state government covers services regulation, staffing and funding; federal government deal with overarching policy, international law, medication approval and income support; and councils consider the local impact. With methadone for example, the state regulates doctors, pharmacies and clinics, the Commonwealth provides the legal infrastructure and the medicine, and the council says where you can actually put a clinic.
Writing to the local, state and/or federal MP for your electorate is a good place to start, especially if you are in a marginal seat and they are sweating on your vote for next time. You can also write to the opposition candidate for the seat you live in. And of course the Minister and Opposition Spokesperson.
I think it is best to personally write to everyone you think is important and related to your concern. Don’t just “cc” them in. Think strategically. Is it more useful to write to everyone at once, the splatter gun approach? Or to snowball, motivating each new correspondent with advice from another area: Dear Tony, Julia says she will “come out” if you do… or Dear Julia, Barry says it’s all your fault…
Just remember, a Minister and their department are interchangeable. Letters from the Minister aren’t actually written by the Minister or even their personal staff, nor are letters to the department head written by them. Both are drafted by the same public servant who is expert in the letter’s subject matter.
No matter who you write to, be sincere, courteous and balanced. You don’t want to make an enemy; you want respect, to persuade them onto your team. So present professionally, check your spelling and grammar, and get someone you respect to comment.
It may take a few weeks to get a response, as it has to go through a few people’s hands. But when you do get your response back, please share it with us through User’s News so we can see if democracy actually works, or if we need to kick start the revolution…
Goal: Say you are writing in support of introducing medicinal cannabis.
Argue: You could talk about how it helps you, and how it could help other Australians in pain. Cite the US example - the number of states, the co-operative doctors, a system that works. Mention the mounting evidence that cannabis has clinical value and cite the last NSW review that acknowledges that.
Challenge: Ask that given there is evidence, and a country like the US can find ways to do it within international law, why medicinal cannabis has not been progressed here? Ask what it would take?
Request: Suggest the issue be reopened for debate with a committee to progress reform. Ask for a public consultation process.
Goal: Say you support increased funding.
Argue: Talk about your difficulty or that of a friend or family member in accessing treatment. Remind them that all Australian families are affected by drug/alcohol problems. Give figures showing a reduction or stasis in funding, or money spent less worthily.
Challenge: Why is funding for drug and alcohol treatment and harm reduction not increasing, despite burning need? What does the government suggest people who cannot access services do?
Request: Ask that funding levels be increased in line with the burning need and a spotlight be thrown on this important area.
Goal: Say you are writing in support of improved funding options for methadone.
Argue: You could talk about your own experience of trying to cope with expensive treatment on a limited budget, money that could go to your kids, your education or other health needs. You could show how much cheaper it is in other states through subsidizing ($5 a week in SA; $15 in ACT). You could mention that for each $1 spent on methadone, $7 is saved elsewhere in the public ledger.
Challenge: Say it is not a new problem and the government is aware of the issues through numerous reports yet have not acted. Suggest that people are being set up for failure by needing $180 a month for one medication, often on low incomes, often parents.
Request: Ask for an update on what steps are being taken to address this already identified problem and the timeline for implementation.
Leah McLeod is a former President of NUAA