Helen went home. The medicine change wasn’t explained.

Being unwell is hard enough. Helen is 79 and lives alone, in the house she has had for forty years. Her daughter works full time and lives forty minutes away.

Follow Helen’s journey
  1. Her daughter asks for a copy of the discharge summary.

    She is told it will be faxed to the GP. Helen goes home without one.

  2. The hospital stops a blood pressure tablet.

    The GP, still without the summary, renews it.

259 daysacross the events shown. The right support arrives on day 259.
14 hours 5 minutesof recorded consultation and visit time
Read the evidence

Inside Helen’s journey

4 selected moments from this composite story.

Day 0 · 10 Nov 2025 · at home; her daughter on the phone

A fall at night, and hours on the floor

Helen falls on the way to the bathroom and cannot get up. Her daughter finds her when she comes by at seven in the morning, and calls an ambulance.

Day 15 · 25 Nov 2025 · GP practice

The GP, without the summary

Her daughter takes her to the GP. The summary has not arrived. Dr A goes through her usual medicines with her and renews them, including the blood pressure tablet the hospital stopped.

“I haven’t had anything from the hospital yet. Let’s keep you on your usual tablets.”

15 min with a clinician · told the story from the start · 0.5 days off work · system $45

Day 40 · 20 Dec 2025 · Public hospital

Ready to leave, and nothing in place

Medically ready to go home, but she cannot manage alone, and nothing is in place. A second assessment, for transition care after hospital, comes within days; a provider with a place to deliver it takes sixteen, over Christmas and New Year. Her daughter rings the ward and My Aged Care three times over the holidays. Her notes say ‘failure to cope, awaiting services’. The new assessment also moves her ongoing help to medium priority, with her place in the queue kept from November.

“She’s medically ready. We’re just waiting on services.”

3 phone calls · 1 h chasing

Day 259 · 27 Jul 2026 · Aged care

Help at home starts

Cleaning and shopping each week, and a worker who checks in. As a full pensioner, Helen pays 17.5% of the cleaning: about $20 a week.

Helen paid $20

“She’s medically ready. We’re just waiting on services.”
The ward · day 40
“With the summary and the reason, I could have reviewed her treatment before renewing it.”
Dr A, her GP · day 63

On paper, Helen is the problem

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.

  • Social admission Day 0 · Public hospital
  • Back again Day 32 · Public hospital
  • Medication discrepancy Day 35 · Public hospital
  • Failure to cope Day 40 · Public hospital

What was explained at each referral?

Six of the ten things below, at two referrals.

  • Day 3 Aged care
    • The reason: told
    • The choice: not told
    • The cost: told
    • The wait: not told
    • Who to call: told
  • Day 75 Eye clinic
    • The reason: told
    • The choice: told
    • The cost: told
    • The wait: not told
    • Who to call: not told

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.

The good care is a pattern too

Helen’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.

  • The ward team Day 2 · Public hospital

    Looked past the ‘social admission’, investigated her urinary symptoms and measured the blood-pressure drop on standing, then reviewed a tablet that may be contributing.

  • A ward pharmacist Day 35 · Public hospital

    Wrote her medicines list for going home, with the reasons for the changes.

  • An occupational therapist and a physiotherapist Day 56 · Aged care

    Made her home safer: rails in the bathroom, a shower chair, the rug gone, and exercises every week.

  • Dr A, her GP Day 63 · GP practice

    Reviewed her blood pressure and the reason for stopping the tablet, asked for a Home Medicines Review, and checked her eyesight.

    “With the summary and the reason, I could have reviewed her treatment before renewing it.”

  • An optometrist Day 75 · Optometrist

    Explained her cataracts, why surgery is the treatment, and the choice between the public eye clinic, at no cost, and a private ophthalmologist, for a fee.

10 countries · Commonwealth Fund
1st
overall of ten high-income countries’ health systems in 2024: Australia, though ‘differences in overall performance between most countries are relatively small’. ‘Even the top-ranked country — Australia — does less well, for example, on measures of access to care and care process.’
Commonwealth Fund, Mirror, Mirror 2024
Australia · patients surveyed
81.9%
of people aged 15 and over who saw a GP in 2024–25 said the GP always showed them respect; 81.6% said so of hospital nurses and 83.4% of specialists.
Australia · OECD patient survey
94%
of patients aged 45 and over with chronic conditions, surveyed at 54 general practices in 2023, reported good quality of care. Australia was a top-five country in four of the survey’s ten areas, including quality and coordination of care.
Australian Commission on Safety and Quality in Health Care, PaRIS survey: Australian national report 2025

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 Helen’s case was lost in the waits and handoffs between the people who got it right.

The same case, with one shared record and one accountable pathway

Same Helen, same fall, same emergency department. Two changes: one record that Helen and her treating team can see, with access for her daughter with Helen’s consent, so the tablet the hospital stopped, and why, is on her GP’s screen the day she goes home; and a pathway that starts support at home within a set time, such as a month of an aged care assessment, as the Royal Commission recommended, with a home safety assessment before discharge and transition care at home starting within 48 hours. On the same record, her discharge plan asks for the eye test the falls guidelines advise, and the eye clinic’s call says what the day involves. 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.

MeasureAs it happenedProposed care
Days until the right support259 d31 d
Recorded consultation and visit time14 hours 5 minutes11 hours 35 minutes
Kept waiting past the booked time2 hours 30 minutes2 hours 30 minutes
Time spent chasing3 hours 20 minutes0 minutes
Told the story from the start4×1×
Helen’s cost, incl. time and lost earnings$2,896$1,373
Medicare, hospital and admin costs$16,861$8,803
Referral letters11
Avoidable repeated tests00
Emergency visits21

Less in the proposed pathway: 228 days, 3 hours 20 minutes of her daughter’s time spent chasing, $1,522 of Helen’s money and time, $8,058 in Medicare, hospital and admin costs and 1 emergency visit.

Paid out of pocket Helen · day 0 to day 259
DayForPaid
245Hospital parking, concession rate$7
259Her share of the first week’s cleaning$20
Total$27
The same case, with the fix$653

This goes beyond one story.

Helen 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.

Australia · waiting for care at home
106,977
people were waiting for an ongoing Support at Home place at 30 June 2026. The Government’s own guide to the wait for funding: seven to eight months at standard priority, five to six at medium. Helen was approved at standard priority on day 3, moved to medium priority after her second fall, and was funded on day 231; her services started on day 259.
My Aged Care, Assessment outcome: Support at Home, data current at 10 August 2026
Australia · what should happen
1 month
from assessment to services starting, the Royal Commission into Aged Care recommended in 2021, warning that ‘there is a clear danger of declining function, inappropriate hospitalisation, carer burnout, premature admission to a residential facility or even death’.
Royal Commission into Aged Care Quality and Safety, Final Report summary, 2021, pp. 97 and 101
Australia · medicines after hospital
1 in 5
changes made to a patient’s medicines in hospital were explained in the discharge summary, on average, in a Sydney hospital audit. Some studies found changes for up to 90% of patients. The 2019 report estimated 250,000 medication-related hospital admissions a year, with half the harm preventable.
Pharmaceutical Society of Australia, Medicine Safety: Take Care, 2019, pp. 6 and 11

Now multiply

Each patient is counted as if their journey went exactly like Helen’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.

$8,058,000
less Medicare, hospital and admin costs
$1,522,000
less cost borne by patients
625 years
less waiting, added up across patients
1,000
fewer emergency visits

How long will I be there, and can I drive home?

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.

Two to three hours

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 blur your eyes for hours

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

Sedation means someone else’s day too

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

Help with travel starts far away

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.

Even paying privately can leave you stuck

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.

Getting through the gate

A referral is normally needed for the higher, referred Medicare specialist rebate. Some private specialists see patients without one; others do not.

Department of Health: referral arrangements, p. 2

Paying doesn’t spare you the search

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.

Healthdirect: referrals and specialist costs

The price can wait until the desk

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

Changing specialists can mean starting again

Once a referral has been used, changing specialist generally needs a new one for referred Medicare benefits, and another appointment.

Referral choice and changing practitioner, pp. 2–5

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.

What needs to change

Getting care shouldn’t mean holding the system together.

A record that follows the patient

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 pathway with a target time, and someone accountable for it

A referral that meets agreed criteria is seen within a set time, such as a month of an aged care assessment, as the Royal Commission recommended. 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.

Write to your MP

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.

Find your federal MP

Share the one-liner

Helen waited 259 days for the right support at home. Along the way: 1 referral, 4 retellings of the story and 2 emergency visits. Chasing the system took 3 hours 20 minutes, and about $2,900 was lost in fees, earnings and time. In the pathway the site proposes, staffed and funded, Helen has the right support on day 31.

If you work in health care

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.

Other people, the same gaps

These composite stories follow different people through the gaps between services.

What happened, visit by visit

The complete record: every event, explanation and recorded cost in Helen’s story.