Being unwell is hard enough. Fred works full time in an office, and his stomach still isn’t right. He collects the sample and drops it at the collection centre on his way to work.
If any of this is close to home, you can talk to someone now, day or night: Lifeline on 13 11 14, or by text on 0477 13 11 14, and Beyond Blue on 1300 22 4636, or by webchat. In an emergency, call 000.
Fred leaves with a jar and a form.
Nobody explains what to do. He looks it up himself.
A negative stool culture reaches his GP.
Nobody tells Fred, and his symptoms go on.
Fred is 32 and works full time in an office. His stomach has not been right for six months: bloating, loose stools, and a tiredness he puts down to work. Over the next five years, depression and a sore shoulder join it.
Fred’s information was lost or delayed 5 times, and the story was told from the start 9 times. The failures in Fred’s story reflect documented patterns, with sources below.
In the proposed pathway, Fred is diagnosed on day 45. As it happened, nobody ordered the blood test that first pointed to coeliac disease until day 1,680. The diagnosis followed 56 days later.
4 selected moments from this composite story.
Six months of bloating, loose stools and tiredness. Dr A asks about work, which is busy, and suggests cutting back on coffee. No tests.
“Probably stress. Try cutting back on coffee and see how you go.”
10 min with a clinician · told the story from the start · Fred paid $50 · 0.5 days off work · system $45
The stomach is worse: urgency, and more tired than ever. Dr D refers Fred to the public clinic, and writes a new psychology referral for the year. The gastroenterology letter lists ‘IBS; depression and anxiety; non-compliant with sertraline’, the tablets he stopped in 2022 after three weeks of side effects. It does not mention the low iron. Beyond ‘long’, nothing is said about how long the list is, about seeing a specialist privately or what that would cost, or who to ring if nothing comes.
“I’ll refer you to the public clinic. The wait is long.”
15 min with a clinician · Fred paid $50 · 0.5 days off work · system $45
A long appointment with Dr E, new to the practice. Fred tells it all again, the iron tablets in early 2021 included. Dr E reads back through the practice’s four years of notes: low iron in August 2021, a negative stool culture from November 2021 that nobody had told him about, and ‘IBS. Stress.’ from his old practice. Dr E checks that Fred is still eating gluten and orders a blood count, iron studies, CRP, tTG-IgA and total IgA.
“Has anyone ever tested you for coeliac disease?”
30 min with a clinician · told the story from the start · Fred paid $52 · 0.5 days off work · system $87
A first visit with Dr F, then a gastroscopy with duodenal biopsies; their results are back by this date. His private hospital cover pays for the day hospital; he pays the doctors’ gaps, and the anaesthetist’s bill comes a fortnight later. After the sedation he may not drive or go home alone, so a friend collects him. Coeliac disease. A gluten-free diet, a dietitian, iron, and a letter to Dr E the same week.
“It’s coeliac disease. It would explain the iron, and a lot of the tiredness.”
2 visits · 40 min with a clinician · told the story from the start · Fred paid $564 · 1.5 days off work · system $315
“Has anyone ever tested you for coeliac disease?”
“It’s coeliac disease. It would explain the iron, and a lot of the tiredness.”
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.
Six months of bloating, loose stools and tiredness, and a busy job. No tests are ordered. The first explanation in Fred’s file is the one the next five years start from.
Fred stops sertraline after three weeks of diarrhoea and nausea, both very common side effects, on top of a stomach nobody has explained. No review had been booked, and when he rang, the next appointment was three weeks away. His referral to the gastroenterology clinic, two years later, says ‘non-compliant with sertraline’.
Six sessions into treatment for depression, Fred mentions his stomach again. It is put down to his mood, and no blood test is ordered. His iron has been low twice.
On a morning Fred cannot get out of bed, he misses a psychology session. A bill for the full fee comes in the mail. Nobody rings to ask how he is.
Fred stops therapy when the year’s tenth Medicare-rebated session is used. The full fee is more than he can pay, and the report his psychologist owes his GP never arrives.
Worse again, Fred sits in his GP’s room while the GP phones the public mental health service. He does not meet its threshold, and is sent back to the GP and a private psychologist he cannot afford.
Six of the fifteen things below, at three 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.
Fred’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.
Heard the whole story from the start, and six sessions helped.
Tried an antidepressant of a different kind, on the PBS, and booked reviews at two and six weeks. This one Fred could take.
Listened, read back through four years of notes, saw the low iron, and ordered coeliac blood tests nobody had ordered.
“Has anyone ever tested you for coeliac disease?”
Confirmed the coeliac disease with biopsies, recommended a dietitian, and wrote to Fred’s GP the same week.
“It’s coeliac disease. It would explain the iron, and a lot of the tiredness.”
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 Fred’s case was lost in the waits and handoffs between the people who got it right.
Same Fred, same stomach, same GP on day 0. Two changes: a pathway that runs the standard first tests before any IBS label and sees a positive coeliac blood test within ninety days, with one clinic accountable for it; and one record that Fred and every clinician can see, so the diagnosis, the results and every psychologist’s report follow him to each new practice and clinician. The depression still comes in 2022 and the shoulder in 2025: the fix does not prevent them, and every psychology session and physio visit costs the same on both lines. It also assumes clear information about a new antidepressant and an early review to check side effects and how he is going. 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 | 1,736 d | 45 d |
| Recorded consultation and visit time | 40 hours 34 minutes | 38 hours 9 minutes |
| Kept waiting past the booked time | 1 hour 5 minutes | 0 minutes |
| Time spent chasing | 3 hours 55 minutes | 0 minutes |
| Told the story from the start | 9× | 3× |
| Fred’s cost, incl. time and lost earnings | $9,707 | $7,923 |
| Medicare, hospital and admin costs | $5,720 | $5,965 |
| Referral letters | 6 | 4 |
| Avoidable repeated tests | 0 | 0 |
| Emergency visits | 0 | 0 |
Less in the proposed pathway: nearly five years (1,691 days), 3 hours 55 minutes of Fred’s time spent chasing and $1,784 of Fred’s money and time. Medicare, hospital and admin costs are $245 higher.
| Day | For | Paid |
|---|---|---|
| 0 | GP visit, gap fee | $50 |
| 42 | GP visit, gap fee | $50 |
| 44 | Iron tablets | $15 |
| 98 | GP visit, gap fee | $50 |
| 154 | GP visit, gap fee | $50 |
| 154 | Iron tablets | $15 |
| 245 | Long GP visit, gap fee | $52 |
| 245 | Probiotics | $35 |
| 343 | Sertraline script | $25 |
| 434 | Psychologist, six sessions at a $90 gap | $540 |
| 518 | Psychologist, ten sessions at a $90 gap | $900 |
| 672 | Psychologist, ten sessions at a $90 gap | $900 |
| 773 | Missed psychology session, full fee | $192 |
| No one rang to ask why | ||
| 917 | Long GP visit, gap fee | $52 |
| 945 | GP visit, gap fee | $50 |
| 945 | Antidepressant script | $25 |
| 1,043 | GP visit, gap fee | $50 |
| 1,099 | Psychologist, ten sessions at a $90 gap | $900 |
| 1,428 | GP visit, gap fee | $50 |
| 1,442 | GP visit, gap fee | $50 |
| 1,463 | Physio, four sessions at full fee | $380 |
| 1,631 | Physio, four sessions under the plan, gap | $126 |
| 1,680 | Long GP visit, gap fee | $52 |
| 1,736 | Gastroenterologist, first visit, gap | $164 |
| 1,736 | Gastroscopy, the gastroenterologist’s gap | $250 |
| 1,736 | Gastroscopy, the anaesthetist’s gap | $150 |
| Not quoted beforehand | ||
| 1,750 | Dietitian, gap | $32 |
| Total | $5,205 | |
| The same case, with the fix | $4,233 | |
Fred 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 Fred’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 ninety days for a positive coeliac blood test. 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.
Fred waited nearly five years (1,736 days) for a diagnosis and a treatment plan. Along the way: 6 referrals and 9 retellings of the story. Chasing the system took 3 hours 55 minutes, and about $9,700 was lost in fees, earnings and time. In the pathway the site proposes, staffed and funded, Fred is diagnosed on day 45.
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/fred/
These composite stories follow different people through the gaps between services.
The complete record: every event, explanation and recorded cost in Fred’s story.
Choose a visit to highlight it on the chart and read what happened.
Six months of bloating, loose stools and tiredness. Dr A asks about work, which is busy, and suggests cutting back on coffee. No tests.
“Probably stress. Try cutting back on coffee and see how you go.”
10 min with a clinician · told the story from the start · Fred paid $50 · 0.5 days off work · system $45
No better. Dr A orders a blood count and iron studies.
10 min with a clinician · Fred paid $50 · 0.5 days off work · system $45
The practice rings: iron is low; take iron tablets. They upset his stomach more, but he keeps taking them. Unexplained low iron is one of the reasons Coeliac Australia lists for offering a coeliac blood test. None is ordered.
“Doctor says your iron’s a bit low. Pick up some iron tablets.”
Fred paid $15 · system $43
Three months after his first visit, Dr A is booked out, so Fred sees Dr B and starts from the beginning. The iron result is in the file; it is not mentioned. A diet sheet and advice to reduce stress. No tests.
“It sounds like irritable bowel. Stress makes it worse.”
12 min with a clinician · told the story from the start · Fred paid $50 · 0.5 days off work · system $45
A new job, a new city, a new GP practice. Fred signs a form asking the old practice to send his records, and rings twice to check they have gone.
2 phone calls · 40 min chasing
What arrives from the old practice is a one-page summary: ‘IBS. Stress.’ No results. Fred starts from the beginning with Dr C, who checks the blood count and iron studies again, with no earlier result to compare. Iron low again. More iron tablets.
“Your notes say IBS. Let’s check your iron again.”
15 min with a clinician · told the story from the start · Fred paid $65 · 0.5 days off work · system $88
At a visit for a chest infection in October, Fred raised his stomach and was asked to book a long appointment for it. This is that appointment: sixty-five minutes past the booked time, so the half day he took off becomes a whole one, then twenty-five minutes and a bigger gap. IBS again. Probiotics, fibre, a food diary and a stool test for infection. No blood tests.
“Keep a food diary and try these probiotics.”
1 h 5 m past the booked time · 25 min with a clinician · Fred paid $87 · 1 day off work · system $87
Fred leaves with a specimen jar and a pathology form, and nothing else. Nobody explains how to collect or store the sample, how soon his lab needs it, or how he will hear the result. He looks up the lab’s instructions online, collects the sample at home, and drops it at a collection centre on the way to work.
1 h chasing
The stool culture is negative and the lab sends the result to Dr C, not to Fred. At the practice it is filed. Nobody rings Fred, and nobody had told him to ring, so he takes the silence to mean all clear.
system $45
Months of low mood, poor sleep and dread before work. Dr C diagnoses depression and writes a mental health treatment plan, its own thirty-five-minute appointment. Sertraline, with nothing said about side effects or how long it takes to help, and a list of psychologists to ring, with nothing said about why these, their fees, their waiting lists, or what to do if none can see him.
“Let’s get you seeing someone. Here’s a list of psychologists.”
35 min with a clinician · told the story from the start · Fred paid $25 · 0.5 days off work · system $86
Two have closed their books. The other four have waiting lists of up to three months. Fred takes the first place offered.
“We’re not taking new clients at the moment.”
6 phone calls · 1 h 10 m chasing
Three weeks of diarrhoea and nausea on top of his stomach, and two days off work. No review was booked. Fred rings the practice about the side effects; the next appointment is three weeks away. He stops the tablets and does not book it: nobody has explained how to get help with side effects or how to stop or change the medicine safely.
“The next appointment with your doctor is in three weeks.”
1 phone call · 15 min chasing · 2 days off work
Fred tells his story from the start. Six sessions from May to July, each with a $90 gap. They help.
6 visits · 300 min with a clinician · told the story from the start · Fred paid $540 · 1.5 days off work · system $609
Medicare needs a GP review before more sessions. Fred mentions his stomach, now worse, and says he stopped the sertraline in March because of the side effects. Dr D puts it down to his mood, notes it as ‘anxiety-related’, and writes the referral for more sessions. No blood test.
“Your gut and your mood are linked. Let’s get the depression settled first.”
20 min with a clinician · 0.5 days off work · system $87
Sessions every fortnight from August, on Dr D’s referral and another in October for the pandemic’s extra sessions. On 31 December the pandemic’s extra ten Medicare sessions a year end: from January the limit is ten again.
10 visits · 500 min with a clinician · Fred paid $900 · 2.5 days off work · system $1,016
Ten sessions, fortnightly through the first half of the year, on a new referral in January and another after six. When the year’s tenth is used, the full fee is more than Fred can pay, so he stops. The report his psychologist owes his GP at the end of a course never arrives.
10 visits · 500 min with a clinician · Fred paid $900 · 2.5 days off work · system $1,016
On a morning he cannot get out of bed, Fred misses a session without ringing. Nobody calls. A week later the bill comes in the mail: the full fee, $191.55, under the clinic’s cancellation policy. Medicare pays nothing for a session that did not happen.
“As per our cancellation policy, the full session fee applies.”
Fred paid $192
Worse again, and not sleeping. Dr D phones the public mental health service with Fred in the room, and Fred answers the intake worker’s questions from the start. He does not meet its threshold. Back to the GP, and a private psychologist.
“He doesn’t meet our threshold. Keep going with his GP and a private psychologist.”
35 min with a clinician · told the story from the start · Fred paid $52 · 0.5 days off work · system $102
Four weeks on, at the next appointment she can give him, Dr D tries an antidepressant of a different kind, on the PBS, and books reviews at two and six weeks, both by phone and bulk billed. Fred can take this one. By the new year he is sleeping again.
3 visits · 40 min with a clinician · Fred paid $75 · 0.5 days off work · system $135
The stomach is worse: urgency, and more tired than ever. Dr D refers Fred to the public clinic, and writes a new psychology referral for the year. The gastroenterology letter lists ‘IBS; depression and anxiety; non-compliant with sertraline’, the tablets he stopped in 2022 after three weeks of side effects. It does not mention the low iron. Beyond ‘long’, nothing is said about how long the list is, about seeing a specialist privately or what that would cost, or who to ring if nothing comes.
“I’ll refer you to the public clinic. The wait is long.”
15 min with a clinician · Fred paid $50 · 0.5 days off work · system $45
With IBS, depression and anxiety in the letter and no blood results, the referral is triaged non-urgent. A letter tells Fred he will be contacted.
“You will be contacted when an appointment becomes available.”
system $35
A psychologist nearer work, with nothing from the first. Fred starts from the beginning. Ten sessions through the year, each with a $90 gap. The report owed to his GP at the end of the course never arrives either.
10 visits · 500 min with a clinician · told the story from the start · Fred paid $900 · 2.5 days off work · system $1,016
A year after the referral, a letter from the public clinic: the referral has ‘expired’, and Fred needs a new one from his GP to stay on the list. For Medicare rebates, the usual twelve-month period starts at the specialist’s first visit, not the date of the letter. Fred has not had that visit, but the public clinic still asks for a new GP referral to keep him on its list.
“Your referral has expired. Please ask your GP to send a new referral so that we can keep your place on the waiting list.”
system $35
Fred rings for an appointment, takes half a day off and pays a $50 gap for ten minutes, in which Dr D prints the January 2024 letter again with a new date: still ‘IBS; depression and anxiety’, still nothing about the iron. The clinic registers it, and his place on the list is kept.
“It’s the same letter with today’s date on it. They just need a fresh one.”
10 min with a clinician · 1 phone call · 10 min chasing · Fred paid $50 · 0.5 days off work · system $45
Fred hurts his shoulder moving a couch. Rest and physio. For a rebate through the chronic-condition pathway, a condition must have lasted, or be likely to last, six months, and a qualifying plan and referral are needed. None is arranged for this new injury. Fred mentions his stomach; he is asked to book another appointment for that.
“Rest it and see a physio. Book another appointment for the stomach.”
12 min with a clinician · Fred paid $50 · 0.5 days off work · system $45
Exercises, and some improvement. The sessions cost a day of work between them, and a flare costs two more.
4 visits · 120 min with a clinician · Fred paid $380 · 3 days off work
Six months on, Fred gets a GP chronic condition plan. It has its own Medicare item, which cannot be billed with an ordinary GP visit on the same day. It gives him five individual allied health visits for the year, shared across the services in his plan. He mentions his stomach; the plan is for the shoulder, and he is asked again to book separately for the stomach. He is still on the public clinic’s list, with no date.
30 min with a clinician · 0.5 days off work · system $161
Four physio sessions with a $63.40 rebate each. The shoulder improves slowly.
4 visits · 120 min with a clinician · Fred paid $126 · 1 day off work · system $254
A long appointment with Dr E, new to the practice. Fred tells it all again, the iron tablets in early 2021 included. Dr E reads back through the practice’s four years of notes: low iron in August 2021, a negative stool culture from November 2021 that nobody had told him about, and ‘IBS. Stress.’ from his old practice. Dr E checks that Fred is still eating gluten and orders a blood count, iron studies, CRP, tTG-IgA and total IgA.
“Has anyone ever tested you for coeliac disease?”
30 min with a clinician · told the story from the start · Fred paid $52 · 0.5 days off work · system $87
The tTG-IgA antibody result is strongly positive, with normal total IgA. It points to coeliac disease; biopsies are needed to confirm it. The antibody component has a $26 Medicare schedule fee. His iron is low for the third time.
system $65
Dr E rings with the result and explains that Fred should keep eating gluten until diagnostic testing is complete, then sends it to the public clinic to have him moved up its list, and refers him for a gastroscopy, explaining that he can wait for the public clinic or pay to be seen privately. Fred rings the clinic: after twenty-one months on its list, still no date. He books the private rooms instead, five weeks away. The rooms quote Dr F’s fees; nobody mentions that an anaesthetist will bill him separately.
“You’re still on the list. We can’t give you a date.”
10 min with a clinician · 2 phone calls · 30 min chasing · system $45
A first visit with Dr F, then a gastroscopy with duodenal biopsies; their results are back by this date. His private hospital cover pays for the day hospital; he pays the doctors’ gaps, and the anaesthetist’s bill comes a fortnight later. After the sedation he may not drive or go home alone, so a friend collects him. Coeliac disease. A gluten-free diet, a dietitian, iron, and a letter to Dr E the same week.
“It’s coeliac disease. It would explain the iron, and a lot of the tiredness.”
2 visits · 40 min with a clinician · told the story from the start · Fred paid $564 · 1.5 days off work · system $315
Dr E adds a dietitian to Fred’s plan. It is his fifth Medicare allied health visit of the year; the physio had the other four. A gluten-free diet, explained properly.
45 min with a clinician · Fred paid $32 · 0.5 days off work · system $63
A first appointment at the public clinic, more than two years after the referral, for a disease diagnosed three months earlier. Dr F’s letter had gone only to Dr E, and nobody had said the clinic needed telling. Fred cancels it.
10 min chasing · system $60