WHAT ARE YOU RIGHTS... AND WHAT TO DO IF YOU ARE NOT HAPPY
What are your rights on the Opioid Treatment Program (OTP)? Check out what the Australian Charter of Healthcare Rights and the NSW OTP Clinical Guidelines have to say about it.
Not all prescribers do things the same way, and they definitely don’t all do the basics well. So what do you do if you are not happy with your care? You deserve the best but sometimes it’s a compromise, like all relationships. Here are some tips about what to do if your prescriber and/or service falls short – especially if you can’t just move to a new service.
YOU HAVE RIGHTS
The Australian Charter of Healthcare Rights
The Australian Charter of Healthcare Rights explains what every patient, not just those on the OTP, can expect from the health system. The table below shows the Charter and explains what your rights means.
NSW Clinical Guidelines – Patient rights and responsibilities
While on OTP you have certain rights as a patient, as well as responsibilities. Knowing your rights means that you know what to expect while on the program. This helps you know if certain things are just part of the process or if they are unfair.
The NSW Clinical Guidelines: Treatment of Opioid Dependence is the document that healthcare providers must follow when treating people on the program.
The Guidelines tell us that while on the program, you have the right to
be treated with consideration and respect and without bias or discrimination.
privacy – this means that your file and test results are confidential. Keep in mind that the new My Health Record electronic file may mean that your info goes wider than it used to and that if you have a file at a public clinic, your info can be accessed by health care workers at all public hospitals in your area.
be advised of all info about the OTP – treatment, what might happen, risks, side and after-effects, and other ways you can be treated. It must be explained to you clearly and in a way you understand. This information is important, especially about what can happen if you use other drugs, when you might overdose and whether you can drive safely.
refuse to have students in your appointment and refuse to be involved in research.
be provided with a trained interpreter if required.
be provided with culturally appropriate support when requested.
know who your prescriber and heath care workers are. This means knowing their first and last names, the job they do at the service and what and where they studied.
get other health care or a second opinion; refuse treatment; or withdraw consent at any time.
expect to be safe as far as where and how you are dosed. You can also seek legal advice if you think the service has been negligent and you have ended up hurt.
have a family member, friend, carer or professional person come to your appointments to help you.
be given info about costs before you start and if they change while you are on the program.
make a complaint and be told how to complain.
As patient, you also have responsibilities to:
work with your prescriber and other workers towards your individual treatment plan.
treat all doctors, chemists, nurses and other workers with respect.
not be violent or threaten anyone with violence. This is a deal breaker – you will get thrown off the program for this one. If you have trouble keeping your anxiety under control and you’re worried about this, talk to the staff about getting some counselling ASAP.
be aware that your driving will be affected when you start on the OTP or if you change your dose, or if you use other drugs or alcohol. Don’t drive or operate heavy machinery if your prescriber tells you not to.
What you deserve from your prescriber and other health care staff
Your OTP provider should live by the “Australian Charter of Healthcare Rights”.
They should follow the “NSW Clinical Guidelines: Treatment of Opioid Dependence” and have a good understanding of patients’ rights and responsibilities according to the NSW Ministry of Health.
They should show an understanding of “real world” drug use or at least show a willingness to listen to you when you talk about the realities of your life. They should have a clear understanding of harm reduction – and they support it!
Your prescriber should know you should be in the driving seat when it comes to choices around your health care. They should treat you with respect and kindness, listen to you, encourage your opinions and questions and allow you enough time for a meaningful consultation. They should never make decisions for you but give you advice and info to help you decide.
As this is often long-term treatment, your prescriber should help you to make your program something you can live with. They should also recognise that you have an important long-term relationship and be willing to work on making that work for both of you.
When discussing takeaway doses with you, your prescriber should take into account travel, child care and other carer responsibilities, work/study and personal disabilities. You get and lose takeaways based on how the treatment is working for you over time – they are never removed as a punishment for a one-off event.
Urine drug screens aren’t used as a trap or for shaming, but rather for motivation (compare it to weighing yourself when you’re try to lose weight).
They should make appointments based on your need, not on some “clinic policy” e.g. fortnightly forever, or over-service you by making you see them too often or do too many urine tests.
WHAT TO DO IF YOU ARE NOT HAPPY WITH YOUR CARE
If your prescriber is not up to scratch, you have some options. Sometimes you will be in the position to get a new service but because of the shortage of OTP providers (especially in rural areas), you may have to learn some skills in how to get along, and failing that, know how to make a complaint that won’t wreck your OTP arrangement.
Before you start, you might like to get some advice about your particular situation by:
talking to a peer at NUAA (8354 7300 or free-call 1800 644 413); or
calling the Opiate Treatment Line (OTL) (free-call 1800 642 428).
If you live in an area where there are various treatment options, voting with your feet and looking for a new prescriber is sometimes the easiest way of improving your health care in the long term. Here are some tips:
Do your research. Talk to other people on the program about their prescribers. Call OTL to find out what other services are in your area. If you are at a public clinic, check out what other doctors are prescribing there and talk to their patients.
Work out what is important to you and what is a deal breaker. For example, some people can put up with travelling a long way to their doctor if they have a respectful and kind prescriber with whom they can have an honest relationship. Others are willing to sacrifice “nice” for someone who bulk-bills and always has an appointment at the last minute or will see their prescriber every fortnight if they can get 6 takeaways a week. Sometimes it’s about money and they need to sacrifice takeaways and other freedoms for a free clinic. Think about what you want and ask your peers about their experiences.
If you have a great GP, you can ask them to prescribe your methadone or buprenorphine for you instead of your current prescriber. Any GP can prescribe for a small number of people without any special training and they can be supported by an OTP specialist by calling the Drug and Alcohol Specialist Advisory Service (DASAS) line on (02) 9361 8006 or toll-free 1800 023 687. It helps if you have been on the program a while and are on a steady dose. Just remember that sometimes doctors who aren’t trained in drug and alcohol issues may be more conservative when dealing with a restricted medication like methadone or bupe – so be prepared for fewer takeaways and more urines. Of course this isn’t always true, especially if they have known you a long time.
A new prescriber may do a “reset” and treat you like a newbie until they get to know you, but if you end up in a better situation long-term, it may be worth it.
A new prescriber will need to request an exit from your doctor. Doctors cannot refuse to do this when asked.
You may want to send your old doctor a polite note as to why you decided to change services. Be careful not to burn any bridges in case your paths need to cross again.
Talking to your prescriber
If you don’t have the option to move services or would rather try and stay where you are, the first step is to work on making your relationship with your prescriber better.
You can go a couple of ways with this – a big meeting to raise all the issues at once or a slow repair, one appointment at a time.
Fronting your prescriber
If things have come to a head, you may need to deal with things straight away. Go “old school” and talk to them (very calmly) to get your cards on the table.
Here are some tips:
Book a long appointment so you have time to deal with the problem.
Take some notes with you to help you keep to the point and say the things you need to say.
If it would help, take a friend or family member with you for support – make it someone you admire for their communication skills.
Be calm, controlled and co-operative.
Start by thanking your doctor for their care and the service they have provided so far. Talk about how helpful OTP is for you and how much you value their involvement in the program.
Think of something that is working about your health care that they may have helped you with and talk about that in a positive way.
You can tell them you would like to have an honest relationship with them, so you are getting the best health outcomes possible.
Let them know that you feel they are not listening to you or respecting your opinion about certain things, and name those things (e.g. too frequent appointments, refusing takeaways, pushing you to go up/down on your dose etc.)
Maybe talk about the positive way other doctors have treated you or your friends in the past and what you admire about those prescribers, including how they have handled the things you are having trouble with at the moment.
Ask if they will consider making changes in your relationship or the way your OTP is managed (e.g. fewer appointments, more takeaways, letting you take the lead on dose changes).
Ask them what they would want from you in order to make them more comfortable to make those changes (e.g. regular contact by phone, guarantees about takeaway storage, working out a care plan). Sometimes prescribers behave as they do because they have medico-legal responsibilities and regulations they need to follow. They need to know you understand that OTP medications are very strong, restricted medicines and that you take your responsibilities to the program seriously.
You could ask them to call DASAS (02 9361 8006 or toll-free 1800 023 687) – the advice line for clinicians - to find out what the industry standard is on the things you are concerned about.
Thank them for listening to you and make sure you finish up on good terms – especially if changing doctors isn’t an option for you because of the lack of services where you live.
Don’t expect them to change instantly, it may take a little time for them to adjust their thinking.
Working with your doctor over time
If you live in a rural/remote area and don’t have many options, you might be concerned about losing your only chance at getting OTP. Your only option may be to work on improving your relationship over time.
Take a representative with you to your regular appointments so there is another point of view. They can tell you if you are being over-sensitive or if your prescriber is actually giving you sub-standard care. If there is a major break-down in your relationship with your doctor, make your support person some sort of professional, like a community worker or even a church worker. If you are lucky enough to have a peer worker at your clinic, use them.
Over time, show your doctor you are responsible and trustworthy by meeting your responsibilities on the program.
Check in with them at each appointment – ask if they are happy with your relationship and the way you are working with them. Let them know how they could support you better.
Be calm, courteous and patient, even when things aren’t going your way. Losing your cool will only set you back.
Let your doctor know you better by telling them your story. Talk about your family, your job, your hobbies during your appointments. The better they know you, the more supportive they are likely to be.
Gently challenge them from time to time with clear arguments e.g. tell them why 2 weekly appointments stops you moving ahead in your life, why you don’t need regular monitoring (on a stable dose for a long time, clear urines) and suggest trying 3 weekly appointments for 3 months to see if it works for you both. Go for small changes made gradually but bring it up every time you see them.
Making a complaint
If all that doesn’t work, go next level and make a formal complaint.
It helps if you can show how you have tried to fix things in an informal way, so if you have tried to talk things through with your prescriber or service, know that all that work wasn’t for nothing.
It’s not always possible to talk it through first, because the discrimination and power imbalance are just too great. Sometimes you need to go straight to the protection of a formal process.
You can’t be thrown off the program for making a formal complaint.
Complaining to the service
Your first step in the formal process is to complain directly to the organisation your prescriber works for. Unless your prescriber is in business for themselves, you can make a complaint to your prescriber’s service. If it is a public health clinic, you can go through the Local Health District to the senior doctor or manager. For a private clinic, try the owner or manager. Doctors in private practice may have a senior doctor or practice partner above them or a practice manager that co-ordinates the practice.
Here are some tips:
Find out what the complaint process is at the service – every service will have one.
It is always better to make a formal complaint in writing. Not only is it taken more seriously, no-one can add in words you don’t mean or take something the wrong way. Get someone to check it for sense and typos. If you don’t have anyone to help, call NUAA and we can find you a peer mentor to help you.
Be calm and courteous in your written complaint and in all dealings with the service.
Keep a diary so you have a record of events when you go to make your complaint.
Give specific examples of where you feel your rights have been overlooked in terms of the “Australian Charter of Healthcare Rights” and/or the OTP guidelines.
Include dates, incidents and circumstances.
Be clear about what you want changed, e.g. you can ask for certain decisions to be reconsidered (e.g. the number of takeaways you are allowed) or that the doctor or other staff be given stigma and discrimination training (NUAA provides great courses).
As part of a service’s complaints process, they will have to get back to you within a certain number of days. If they haven’t, send them a polite reminder.
Making a complaint through the Health Care Complaints Commission (HCCC)
If you didn’t get a reasonable response when you complained to the service or if the care you received from your prescriber was particularly bad or harmful, you can file a formal complaint with the office of the NSW HCCC (1800 043 159 or www.hccc.nsw.gov.au).
The HCCC gives you a voice and provides some protection against a service making things harder for you if you complain about them.
In general, you can complain to the HCCC about the professional conduct of a health practitioner and/or the clinical care and treatment provided by an individual or organisation. Note that they cannot make a health care provider treat you if they don’t want to or to change their fees.
You should talk to staff at the HCCC first as they can tell you how to lodge a complaint. There is a form to use and they will even help you write your complaint.