Being unwell is hard enough. At 38, Sam, a bookkeeper and parent of two, is living with pain in the hands and feet, exhaustion and a rash. A night in Emergency brings urgent advice.
Sam types up a timeline the night before.
The first specialist does not read it.
The emergency registrar writes ‘needs urgent rheumatology’.
Filed at the GP practice, marked ‘no action’.
Sam is 38, keeps the books for two small businesses and has two kids. Sore hands and feet, exhaustion, a rash on both elbows.
Sam’s information was lost or delayed 8 times, and the story was told from the start 9 times. The failures in Sam’s story reflect documented patterns, with sources below.
In the proposed pathway, Sam is diagnosed on day 28. As it happened, Sam did not see a specialist until day 170, and waited another 189 days after that for a diagnosis.
4 selected moments from this composite story.
Three months of pain in the hands and feet, exhaustion and a scaly rash on both elbows. Dr A, Sam’s usual GP, orders basic bloods and suggests it is typing and stress. Sam mentions the rash; it is not written down.
“Let’s not jump to conclusions. Try ibuprofen and see how you go.”
12 min with a clinician · told the story from the start · Sam paid $50 · 0.5 days off work · system $135
The clinic’s criteria for suspected inflammatory arthritis ask how long the stiffness lasts, which joints are swollen, and for the blood results. The two-line letter has none of them, so the triaging clinician sends it back to the GP practice, where it is filed. Sam is on no list, and nobody tells Sam.
system $35
No call has come from the GP practice, so Sam rings the public clinic. It has received nothing from Emergency, and has no referral for Sam: the first went back to the GP in March. The GP needs to send a new one, and the practice needs an appointment for that. On the second call Sam’s voice rises, and the call is noted: ‘patient agitated’. Sam is now the only one carrying the story from place to place; most of it sits unread in the GP’s file.
“Your GP would need to send us a new referral.”
told the story from the start · 2 phone calls · 40 min chasing · system $15
Thirty-five minutes past the booked time: Dr D’s appointments run long, and so does Sam’s. Dr D listens, reads the typed timeline, examines hands, feet and elbows. Asks for every prior result; Sam has paper copies of some. The imaging practice directs the request to Dr C’s rooms, which want it in writing. Dr D orders an ultrasound to assess the worsening joints, without the earlier report available for comparison. Diagnosis: psoriatic arthritis. The rash and the joints fit the same condition. The plan is once-weekly methotrexate with folic acid after pretreatment safety checks, early and ongoing blood monitoring, and a nurse line number. The GP letter goes the same day.
“Your rash and your joints are the same disease. I’m sorry it took this long.”
35 min past the booked time · 45 min with a clinician · told the story from the start · 1 h chasing · Sam paid $324 · 0.5 days off work · system $156
“This is textbook. Why hasn’t anyone sorted this out for you?”
“Your rash and your joints are the same disease. I’m sorry it took this long.”
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.
Sam brings a typed timeline and the February blood result because no results travelled with the referral. Dr C reads neither.
Sam stops tablets that caused nausea and came with an eye warning nobody explained. The prescriber was away for six weeks, and the GP felt unable to change a drug a specialist had started.
Sam asks for a second specialist after two visits with the first: fifteen minutes and ‘You’ve been reading Dr Google, haven’t you?’, then eight minutes and two prescriptions.
Sam had seen a GP five times. The emergency registrar calls it textbook and writes ‘needs urgent rheumatology’.
Ten months in, Sam has been sent from specialist to GP and back again: ‘Speak to your GP’, ‘You’ll need to ask them’, and now ‘Your GP would need to send us a new referral’. On the second call that day, Sam’s voice rises.
Two specialist appointments arrive after the diagnosis: the public clinic’s, eleven months from Sam’s first referral, and dermatology’s, nine months from its referral. Sam cancels each the day it arrives.
Six of the twenty things below, at four 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.
Sam’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.
Examined Sam’s hands, feet and elbows that night, called it textbook, and wrote ‘needs urgent rheumatology’ in the discharge summary.
“This is textbook. Why hasn’t anyone sorted this out for you?”
Forty-five minutes. Read the typed timeline, examined hands, feet and elbows, made the diagnosis, wrote a plan, and sent the GP a letter the same day.
“Your rash and your joints are the same disease. I’m sorry it took this long.”
Responded promptly to a mouth ulcer and arranged a same-day clinical review.
Wrote a shared-care plan, so Sam’s GP and specialist each know who is responsible for what.
“From here your GP and I share this. You shouldn’t have to carry it.”
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 Sam’s case was lost in the waits and handoffs between the people who got it right.
Same Sam, same disease, same GP on day 0. Two changes: one record that Sam and the treating team can see, with consent and access controls, and a structured referral form that asks what triage needs to know and attaches results as they arrive. Queensland’s Smart Referrals already prompts for clinical details and lets GPs attach results; this version makes the form compulsory and adds automatic attachment. The other change is an early-arthritis pathway whose checklist comes up when a GP records joint pain, held to Queensland’s own thirty days for suspected inflammatory arthritis, with one clinic accountable for meeting it. 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 | 359 d | 28 d |
| Recorded consultation and visit time | 4 hours 51 minutes | 2 hours 15 minutes |
| Kept waiting past the booked time | 2 hours 25 minutes | 35 minutes |
| Time spent chasing | 7 hours 45 minutes | 10 minutes |
| Told the story from the start | 9× | 1× |
| Sam’s cost, incl. time and lost earnings | $4,782 | $478 |
| Medicare, hospital and admin costs | $2,506 | $1,898 |
| Referral letters | 5 | 1 |
| Avoidable repeated tests | 0 | 0 |
| Emergency visits | 1 | 0 |
Less in the proposed pathway: 331 days, 7 hours 35 minutes of Sam’s time spent chasing, $4,304 of Sam’s money and time, $608 in Medicare, hospital and admin costs and 1 emergency visit.
| Day | For | Paid |
|---|---|---|
| 0 | GP visit, gap fee | $50 |
| 45 | GP visit, gap fee | $50 |
| 98 | GP visit, gap fee | $50 |
| 170 | Specialist, first visit, gap | $294 |
| Fee first given at the desk | ||
| 177 | Ultrasound, gap | $160 |
| 214 | Specialist review, gap | $142 |
| 232 | Prednisolone script | $12 |
| 232 | Hydroxychloroquine script | $32 |
| 235 | GP visit, gap fee | $50 |
| 270 | GP visit, gap fee | $50 |
| 291 | Prednisolone script | $12 |
| 291 | Taxi home at 3 am | $45 |
| 312 | GP visit, gap fee | $50 |
| 359 | Specialist, first visit, gap | $324 |
| 366 | Ultrasound again, gap | $160 |
| 366 | The same ultrasound, charged twice | $160 |
| Refund not received by day 452 | ||
| 400 | Methotrexate script | $25 |
| 452 | Specialist review, gap | $142 |
| Total | $1,808 | |
| The same case, with the fix | $114 | |
Sam 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 Sam’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 thirty days for suspected inflammatory arthritis, Queensland’s own Category 1. 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.
Sam waited 359 days for a diagnosis and a treatment plan. Along the way: 5 referrals, 9 retellings of the story and an emergency visit. Chasing the system took more time than the recorded consultations and visits, and about $4,800 was lost in fees, earnings and time. In the pathway the site proposes, staffed and funded, Sam is diagnosed on day 28.
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
These composite stories follow different people through the gaps between services.
The complete record: every event, explanation and recorded cost in Sam’s story.
Choose a visit to highlight it on the chart and read what happened.
Three months of pain in the hands and feet, exhaustion and a scaly rash on both elbows. Dr A, Sam’s usual GP, orders basic bloods and suggests it is typing and stress. Sam mentions the rash; it is not written down.
“Let’s not jump to conclusions. Try ibuprofen and see how you go.”
12 min with a clinician · told the story from the start · Sam paid $50 · 0.5 days off work · system $135
Sam phones for the results. A receptionist reads from the screen. The lab flagged a raised inflammatory marker; the GP who cleared the results queue had marked it ‘no action’. Sam is told there is nothing to worry about.
“Doctor says nothing to worry about.”
1 phone call · 10 min chasing
Dr A is booked out for three weeks, so Sam sees Dr B and starts from the beginning. Morning stiffness now lasts an hour. Dr B refers to the public rheumatology clinic. The referral is a two-line letter, not the state’s referral form, which would have asked for them: no mention of the stiffness, the rash or the blood result, and nothing attached. Dr B does not say what the clinic is to look for, how long its list is, or that a private rheumatologist is an option, at a price.
“I’ll pop a referral through. They’ll be in touch.”
12 min with a clinician · told the story from the start · Sam paid $50 · 0.5 days off work · system $45
The clinic’s criteria for suspected inflammatory arthritis ask how long the stiffness lasts, which joints are swollen, and for the blood results. The two-line letter has none of them, so the triaging clinician sends it back to the GP practice, where it is filed. Sam is on no list, and nobody tells Sam.
system $35
Twenty-five minutes on hold, to learn Sam is not on the list: the referral went back to the GP practice six weeks ago. The practice finds it filed; a new one needs another appointment, and the clinic says the wait is long anyway. Both suggest going private.
“You could always go private.”
told the story from the start · 2 phone calls · 45 min chasing · system $15
Dr B copies the same two-line letter and addresses it to Dr C, the rheumatologist the practice usually writes to, with no word on what Dr C is being asked, why Dr C, who else there is, or what the rooms charge. The returned public referral stays filed; nobody suggests completing and resending it as well. Sam asks for a printout of the February blood result to take along. The first available appointment is ten weeks away; nobody mentions the fee when Sam books.
“I’ll send the same letter to the private rooms.”
10 min with a clinician · 20 min chasing · Sam paid $50 · 0.5 days off work · system $45
Seventy minutes past the booked time, and nobody says how long it will be, so the half day Sam took off becomes a whole one. Sam brings a typed timeline, put together the night before from receipts and dates, with the printout of the February blood result. Dr C reads neither, examines the hands but not the feet, and does not look at the rash Sam raises. Bloods are ordered afresh; the GP’s results are not in the letter. X-rays and an ultrasound too. The fee, $450 with $156 back from Medicare, is first mentioned at the desk on the way out.
“You’ve been reading Dr Google, haven’t you?”
1 h 10 m past the booked time · 15 min with a clinician · told the story from the start · 1 h 30 m chasing · Sam paid $294 · 1 day off work · system $156
The private ultrasound leaves Sam $160 out of pocket and finds mild inflammation in three joints. The blood panel repeats the one from day 0; the February printout went unread, so nobody sees that the marker was raised in February. The reports go to Dr C only; the GP never sees them.
40 min with a clinician · 15 min chasing · Sam paid $160 · 0.5 days off work · system $310
The Medicare rebate for Dr C’s first visit has not arrived: the rooms lodged the claim with the wrong referral date. The rooms say it is between Sam and Medicare; Medicare says only the rooms can fix the claim. Three calls and a copy of the referral later, the rebate lands on day 290, four months after the visit.
“That’s between you and Medicare.”
3 phone calls · 1 h 15 m chasing
Forty minutes past the booked time, then eight. ‘Mild something.’ A short course of prednisolone and a start on hydroxychloroquine. Nothing about how long it takes to work, what side effects to expect, or what to do if it fails. Sam asks about the rash again. The letter to the GP is dictated today and sent five weeks later.
“That’s dermatology, not me. Ask your GP to refer you.”
40 min past the booked time · 8 min with a clinician · Sam paid $142 · 0.5 days off work · system $78
The short course of prednisolone, $12, helps while Sam takes it; after it ends, the pain comes back and Sam misses four days of work. Hydroxychloroquine, costed at $32, brings nausea, and the leaflet mentions eye checks nobody discussed. Sam phones Dr C’s rooms.
“Doctor is away for six weeks. Next review is in nine. Speak to your GP.”
1 phone call · 15 min chasing · Sam paid $44 · 4 days off work
This time Sam sees Dr A, who has received nothing from Dr C. Sam starts from the beginning. Dr A repeats the blood tests (bulk billed): the marker is still up, which Dr A says to raise at the specialist review. Sam describes the nausea and the eye warning. Dr A will not adjust a drug a specialist started, and writes a referral to public dermatology for the rash, which months of pharmacy creams have not shifted. Nothing is said about how long the list is, what a private dermatologist would cost, or who to ask if no letter comes.
“I can’t change what a specialist has started. You’ll need to ask them.”
12 min with a clinician · told the story from the start · Sam paid $50 · 0.5 days off work · system $135
The rash referral is triaged Category 3. An acknowledgement letter goes to the GP practice.
system $35
It reads: ‘? early rheumatoid arthritis. Trial HCQ. Review 3/12.’ The rash remains unassessed. The letter is scanned and filed. Sam never sees it, and nobody connects the joint symptoms to the dermatology referral written two weeks earlier.
Nausea, the eye warning and no one to ask. Sam stops hydroxychloroquine alone, decides not to go back to Dr C, and rings to cancel the review booked for day 295. Almost nine months in, there is no plan at all, and Sam is on nothing.
1 phone call · 10 min chasing
Dr B is reluctant, but writes a referral to Dr D, whom Sam found online. Dr B does not say what Dr D is being asked to look at, or suggest anyone else. Sam asks the fee before booking: $480, with $156 back from Medicare. First available appointment: twelve weeks. Dr C’s letter is in the file; Dr B does not open it, so the new referral does not mention the working diagnosis.
“Dr C is very good, you know.”
10 min with a clinician · 20 min chasing · Sam paid $50 · 0.5 days off work · system $45
Sam cannot hold a cup or turn a key. At 9 pm Sam goes to the emergency department and is there for six hours. The registrar is kind and thorough: examines hands and feet, looks at the elbows, and writes ‘clear synovitis, psoriasis, needs urgent rheumatology’ in the discharge summary. This hospital has no rheumatology clinic, so the referral is left to the GP, and Sam is told the summary will be sent there. Sam is handed a copy on the way out. Another prednisolone script and a taxi home at 3 am: $57 between them. Five days off work.
“This is textbook. Why hasn’t anyone sorted this out for you?”
45 min with a clinician · told the story 2 times · Sam paid $57 · 5 days off work · system $833
The discharge summary arrives by fax, is scanned, and is marked ‘patient under specialist care, no action’. The file also holds the referral Dr B wrote to Dr D, whom Sam has not yet seen. Nobody writes the new referral it calls for, and Sam is not called.
No call has come from the GP practice, so Sam rings the public clinic. It has received nothing from Emergency, and has no referral for Sam: the first went back to the GP in March. The GP needs to send a new one, and the practice needs an appointment for that. On the second call Sam’s voice rises, and the call is noted: ‘patient agitated’. Sam is now the only one carrying the story from place to place; most of it sits unread in the GP’s file.
“Your GP would need to send us a new referral.”
told the story from the start · 2 phone calls · 40 min chasing · system $15
Dr A writes a new public referral with the discharge summary attached. Twelve minutes, a $50 gap, and the first time the public clinic has seen an accurate description of Sam’s joints.
12 min with a clinician · Sam paid $50 · 0.5 days off work · system $45
Category 1 has a thirty-day target. The stiffness, rash and raised blood result were there on day 45 but missing from the first referral. The new referral also carries the emergency registrar’s findings after Sam’s severe flare: synovitis, psoriasis and a request for urgent review.
system $35
Thirty-five minutes past the booked time: Dr D’s appointments run long, and so does Sam’s. Dr D listens, reads the typed timeline, examines hands, feet and elbows. Asks for every prior result; Sam has paper copies of some. The imaging practice directs the request to Dr C’s rooms, which want it in writing. Dr D orders an ultrasound to assess the worsening joints, without the earlier report available for comparison. Diagnosis: psoriatic arthritis. The rash and the joints fit the same condition. The plan is once-weekly methotrexate with folic acid after pretreatment safety checks, early and ongoing blood monitoring, and a nurse line number. The GP letter goes the same day.
“Your rash and your joints are the same disease. I’m sorry it took this long.”
35 min past the booked time · 45 min with a clinician · told the story from the start · 1 h chasing · Sam paid $324 · 0.5 days off work · system $156
An appointment for day 380, a month past the Category 1 thirty-day target and eleven months from Sam’s first referral. Sam rings to cancel it. The first public rheumatology referral was returned; the second was triaged but produced no appointment before the private diagnosis.
1 phone call · 10 min chasing · system $60
Another ultrasound, another $160 gap. It shows inflammation in several joints. A repeat scan after symptoms worsen can be reasonable, even with the earlier report missing and nothing to compare it with. The practice takes the $160 twice. A refund is promised within thirty days; two calls later, on day 452, it still has not come.
35 min with a clinician · 2 phone calls · 45 min chasing · Sam paid $320 · 0.5 days off work · system $100
Scheduled monitoring bloods, bulk billed, and a methotrexate script. Sam reports a mouth ulcer; the nurse responds promptly, arranges same-day clinical review and gives instructions about the medicine and any further tests. Morning stiffness has begun to improve.
10 min with a clinician · Sam paid $25 · system $90
An appointment for day 520 to assess the rash. Dr D has told Sam the rash and the joints are the same disease, and Sam has started a psoriatic arthritis treatment plan, so Sam rings to cancel. The rash may still need a skin specialist, even with the arthritis treated.
1 phone call · 10 min chasing · system $60
Twenty-five minutes. Improving. A shared-care plan goes to the GP: what to monitor, when to call, who is responsible for what.
“From here your GP and I share this. You shouldn’t have to carry it.”
25 min with a clinician · Sam paid $142 · 0.5 days off work · system $78