Being unwell is hard enough. Xi works in a commercial kitchen and speaks Mandarin at home. Her English is enough for the shops, but not for a medical letter.
Her daughter takes a half day off to interpret at the GP.
The referral does not say Xi needs an interpreter.
The hospital rings, then writes, in English.
Xi cannot follow the instructions, and misses the appointment.
Xi is 55 and works in a commercial kitchen in New South Wales. She came to Australia twenty years ago and speaks Mandarin at home; her English is enough for the shops, not for a medical letter. In March the result of her free bowel screening test arrives.
Xi’s information was lost or delayed once, and the story was told from the start 3 times. The failures in Xi’s story reflect documented patterns, with sources below.
In the proposed pathway, Xi is diagnosed on day 56. As it happened, Xi had her colonoscopy on day 290, and waited another 21 days after that for a treatment plan.
4 selected moments from this composite story.
Her daughter helped with the kit’s form and left the language question blank, and named no doctor; the result goes only to her, in English. The letter says the test found blood and to see a doctor as soon as possible. Xi can tell it is important, not what it says, and keeps it for her daughter to read.
“I encourage you to make an appointment to see your doctor as soon as possible, preferably within the next two weeks, to discuss the result.”
Almost five months after her result, and weeks past its category, the hospital rings, in English, to offer a date: the referral did not say she needed an interpreter. Xi says yes to what she cannot follow, and nobody on the call checks that she has understood. The letter confirming it, with the bowel preparation instructions, is in English, and her daughter is interstate. She misses the appointment. A second call, again in English and with no interpreter, offers a date two weeks later, and she says yes again; the letter confirming it is in English too.
system $120
Dr A reads the program’s letter, and finds the hospital’s letter from a month before in her file. He books a long appointment with a phone interpreter. For the first time Xi hears it from a professional interpreter: blood in the sample needs investigation, but a positive screening result does not itself mean cancer. The new referral says ‘Mandarin interpreter required’. He explains that as a public patient she will pay nothing. Having it done privately is not raised, and he cannot say how long the list is, and does not say whom she should ring if the hospital does not.
“I should have called an interpreter the first time.”
25 min with a clinician · told the story from the start · Xi paid $52 · 0.5 days off work · system $87
The biopsies confirm colon cancer. Staging scans suggest nearby lymph-node involvement, without distant spread. After the cancer team’s review, the surgeon explains a plan through an interpreter: surgery, and then a decision about chemotherapy that depends on the pathology of the tumour and lymph nodes, and on Xi’s health and what she wants. A nurse calls in Mandarin.
40 min with a clinician · 1 day off work · system $492
“It’s easier if you come along. Can you come next time too?”
“You did not attend your appointments. If you have any questions about your care, please contact your GP.”
People who are unwell get stressed, forget details and ask questions, and care should allow for that. Open a label to see what it leaves out.
Ten minutes, with her daughter interpreting between her own questions. The notes say ‘poor historian’. A free professional interpreter was a phone call away.
Two calls in English booked two dates, and the letters and the bowel preparation instructions came in English. Her daughter was interstate, and Xi could not follow any of it. The hospital records ‘did not attend’ twice and takes her off the list.
Sixteen weeks after her referral, the screening program writes to her and her GP: no colonoscopy recorded. On its register, Xi is one of the people with no colonoscopy after a positive result. She had been taken off the list for missing two appointments in letters she could not read.
Two of the ten things below, at two referrals.
A point counts as told if anyone explained it when the referral was written or the appointment booked.
The pathway we propose answers the last column: one place responsible for the case, and a status that shows where the referral is.
Xi’s story also has people in it who got it right. They are the health system as well, and most people who see a GP say the GP always shows them respect.
Read the program’s letter, booked a long appointment with a phone interpreter, and wrote ‘Mandarin interpreter required’ on the new referral.
“I should have called an interpreter the first time.”
Rang her in Mandarin to explain the preparation, and had a professional interpreter there on the day.
“We found a growth. We need to talk about what happens next.”
Explained the plan through an interpreter; the nurse calls her in Mandarin.
Some of the care in these stories was careless or dismissive, and the chart marks it in red. Good care also has to be reached: much of Xi’s case was lost in the waits and handoffs between the people who got it right.
Same Xi, same test, same positive result. Two changes: one record that checks her preferred language and interpreter needs, and carries it and her history from the screening form to every letter, referral and appointment, so she gets a call in Mandarin and a professional interpreter at each step; and a pathway that sees a positive screening test within a set time, such as a colonoscopy within 30 days of being listed when assigned Category 1, as in this NSW case, with one clinician accountable for the waiting list. That is the blue line on the chart. The proposed pathway still needs the staff, appointments and funding to run it, and a diagnosis, or support starting, is where the ongoing care begins.
| Measure | As it happened | Proposed care |
|---|---|---|
| Days until a diagnosis and a plan | 311 d | 56 d |
| Recorded consultation and visit time | 1 hour 45 minutes | 1 hour 25 minutes |
| Time spent chasing | 15 minutes | 10 minutes |
| Told the story from the start | 3× | 1× |
| Xi’s cost, incl. time and lost earnings | $1,098 | $864 |
| Medicare, hospital and admin costs | $1,722 | $1,480 |
| Referral letters | 2 | 1 |
| Avoidable repeated tests | 0 | 0 |
| Emergency visits | 0 | 0 |
Less in the proposed pathway: 255 days, $234 of Xi’s money and time and $242 in Medicare, hospital and admin costs.
| Day | For | Paid |
|---|---|---|
| 71 | GP visit, gap fee | $50 |
| 196 | Long GP visit, gap fee | $52 |
| Total | $102 | |
| The same case, with the fix | $50 | |
Xi is invented, but what goes wrong in the story follows documented patterns. Every figure here comes from official statistics, surveys, medical bodies or research, and each one links to its source.
Each patient is counted as if their journey went exactly like Xi’s, on both lines, so the totals are simple multiplication. The 1,000 is only a starting point. The totals cover every event shown, across all the years, and leave out the costs listed in the notes.
Often longer than you planned, and sometimes not by car. Some visits take hours, and some leave you unable to drive, and you may not hear about either until you arrive.
Public eye clinics tell patients to allow two to three hours, for tests and for drops that take time to work. We found no Australian standard for how long a patient can be kept waiting past the booked time. In New South Wales cancer clinics in 2024, most appointments started within 30 minutes of the booked time, and 28% of patients whose appointment started late were told how long they would wait.
Sydney Eye Hospital, outpatient factsheet · Bureau of Health Information, Outpatient Cancer Clinics Survey 2024
Drops that widen the pupils take 20 to 40 minutes to work and usually last about six hours. Their product information says not to drive until vision is clear, and public eye clinics tell patients they will not be able to drive. A patient who was not told before the day and drove there can lose the rest of it.
Tropicamide product information, sections 4.7 and 5.1 · Sydney Eye Hospital
After sedation for a colonoscopy, a patient may not drive for 24 hours or travel alone on public transport, and needs someone to take them home and, ideally, stay overnight.
Queensland Health: colonoscopy · Australian Society of Anaesthetists
State travel subsidies begin at a distance: in New South Wales, more than 100 km one way or 200 km in a week, and in Queensland, more than 50 km from the nearest public hospital. Below those distances, the schemes pay nothing towards the trip.
NSW Health: IPTAAS · Queensland Health: Patient Travel Subsidy Scheme
All of this fits in the appointment letter: how long to allow, whether drops or sedation are likely, and whether to bring someone to take you home.
Tests, drops and sedation are often needed, and a long visit can be a thorough one. What matters is knowing what the day involves before it comes.
Find a GP. Explain why you need help. Get a referral. Find someone who will see you. Wait. And if the care isn’t helping, start again with someone else.
A referral is normally needed for the higher, referred Medicare specialist rebate. Some private specialists see patients without one; others do not.
Private health insurance does not cover ordinary specialist appointments in their rooms. Medicare may pay part and leave a gap, and you still have to find someone who will see you.
Specialists set their own fees. No rule limits them, and there is no single requirement for how far ahead a patient must be told. The Department’s own paper says informed financial consent ‘is not currently established as a clear, enforceable patient right’. By September 2026, 106 of about 6,300 eligible specialists had chosen to show their fees on the government’s Medical Costs Finder; a law passed that month will let the government publish them itself.
Fee transparency consultation paper, pp. 6 and 9 · Excessive fees consultation paper, p. 17 · Minister for Health, 16 September 2026
Once a referral has been used, changing specialist generally needs a new one for referred Medicare benefits, and another appointment.
Patients should be able to question poor care and ask for another opinion without being written off as difficult.
GP visits often help: a GP can assess, gather results and follow up, and a new doctor is not always a better one. The site asks for trials of easier ways to reach a specialist, and to change one.
Getting care shouldn’t mean holding the system together.
Build on My Health Record and the referral systems connected to it, so that referrals, results, discharge summaries and specialist letters reach the patient and the people treating them, in the software they already use. Patients keep their choices, consent is still needed and access stays controlled, and there is a safe way to share the essentials for someone who does not use My Health Record.
A referral that meets agreed criteria is seen within a set time, such as a colonoscopy within 30 days of being listed when assigned Category 1, as in this NSW case. Waits to get onto the list are published, and one clinic is responsible for the case until the patient is seen. The patient and referrer can see whether it was received, accepted or needs more information, and who will follow up.
Copy this message, replace the parts in [square brackets] with your own details, and send it. Public specialist clinics are run by the states and territories, so your state or territory MP can act too.
Xi waited 311 days for a diagnosis and a treatment plan. Along the way: 2 referrals and 3 retellings of the story. About $1,100 was lost in fees, earnings and time. In the pathway the site proposes, staffed and funded, Xi is diagnosed on day 56.
You are in these stories, including as the people who got it right. Share this page with your colleagues, and ask your college, union or employer to back the two changes.
https://www.betweendoctors.org/journeys/xi/
These composite stories follow different people through the gaps between services.
The complete record: every event, explanation and recorded cost in Xi’s story.
Choose a visit to highlight it on the chart and read what happened.
Her daughter helped with the kit’s form and left the language question blank, and named no doctor; the result goes only to her, in English. The letter says the test found blood and to see a doctor as soon as possible. Xi can tell it is important, not what it says, and keeps it for her daughter to read.
“I encourage you to make an appointment to see your doctor as soon as possible, preferably within the next two weeks, to discuss the result.”
Eight weeks on, the program’s reminder arrives. Her daughter, visiting, reads both letters and rings the GP.
1 phone call · 15 min chasing · system $15
Ten minutes. Her daughter interprets, and asks her own questions too; nobody offers a professional interpreter, and both have taken a half day off. His notes say ‘poor historian’. Dr A refers Xi to the public hospital for a colonoscopy, and lets the screening register know. The referral does not say she needs an interpreter. What the colonoscopy is looking for, and that a positive result is not a diagnosis, is not explained. Nothing is said about how long the hospital’s list is, about having it done privately or what that would cost, or who to ring if she hears nothing.
“It’s easier if you come along. Can you come next time too?”
10 min with a clinician · told the story from the start · Xi paid $50 · 1 day off work · system $45
Her positive screening test is assigned Category 1, the most urgent planned category. The public median from a positive screen to colonoscopy is 85 days.
system $35
Almost five months after her result, and weeks past its category, the hospital rings, in English, to offer a date: the referral did not say she needed an interpreter. Xi says yes to what she cannot follow, and nobody on the call checks that she has understood. The letter confirming it, with the bowel preparation instructions, is in English, and her daughter is interstate. She misses the appointment. A second call, again in English and with no interpreter, offers a date two weeks later, and she says yes again; the letter confirming it is in English too.
system $120
She misses the second date too. The hospital removes her from the list and writes, in English, to Xi and her GP. Her daughter is still interstate, and the letter waits for her; at the practice, the GP’s copy is scanned and filed.
“You did not attend your appointments. If you have any questions about your care, please contact your GP.”
Sixteen weeks after her referral, the program writes to Xi and her GP again: no colonoscopy has been reported. It wrote at eight weeks too, and its staff may have rung at twelve; her need for an interpreter has still not been recorded.
Dr A reads the program’s letter, and finds the hospital’s letter from a month before in her file. He books a long appointment with a phone interpreter. For the first time Xi hears it from a professional interpreter: blood in the sample needs investigation, but a positive screening result does not itself mean cancer. The new referral says ‘Mandarin interpreter required’. He explains that as a public patient she will pay nothing. Having it done privately is not raised, and he cannot say how long the list is, and does not say whom she should ring if the hospital does not.
“I should have called an interpreter the first time.”
25 min with a clinician · told the story from the start · Xi paid $52 · 0.5 days off work · system $87
Category 1 again. More than 30 days have passed since she was removed; neither copy of the removal letter said that a return within 30 days would have kept her original listing date. The hospital accepts the new referral as a new listing and records a new waiting-list start date.
system $35
A phone call in Mandarin the week before explains the preparation. On the day, a professional interpreter. The colonoscopy finds a growth that looks like cancer; biopsies are taken. Her daughter takes the day off to bring her home: after the sedation, Xi may not drive or travel home alone.
“We found a growth. We need to talk about what happens next.”
30 min with a clinician · told the story from the start · 3 days off work · system $893
The biopsies confirm colon cancer. Staging scans suggest nearby lymph-node involvement, without distant spread. After the cancer team’s review, the surgeon explains a plan through an interpreter: surgery, and then a decision about chemotherapy that depends on the pathology of the tumour and lymph nodes, and on Xi’s health and what she wants. A nurse calls in Mandarin.
40 min with a clinician · 1 day off work · system $492