A health passport for a rare or complex condition is a short document controlled by the person it describes. It sets out who they are, how they communicate, their diagnosis, current medications, care team contacts and emergency steps, so families don’t have to re-explain everything to every new clinician. In Queensland, start with Julian’s Key. Keep the front page brief and update it after every change.
The rest of this article is about doing that well. We write as a Cairns-based registered NDIS provider supporting adults with high-intensity and complex needs. We also write from our founders’ experience of caring for their own child with Sanfilippo Syndrome. A rare condition teaches you quickly that the person who knows the most in the room is usually the parent, spouse or long-term support worker, not the clinician who has just walked in.
Why rare conditions make the retelling problem worse
Most clinicians will never have treated someone with your family member’s condition. That isn’t a criticism of them. It’s arithmetic. A GP might see one person with a given rare syndrome in an entire career, and an emergency registrar on a night shift has no time to read up on it. So the family ends up as the briefing service, repeating the history to the triage nurse, the registrar, the ward team, the night staff and the discharge planner.
Research backs up what families already know. In a 2025 UK pilot, 96.2% of 157 patients and caregivers living with rare conditions said they spent a lot of time explaining medical needs to new care teams, and 65.6% found this challenging (European Journal of Human Genetics, 2025).
Time is only part of the cost. When you’re stressed at 2am in an emergency department, details slip. The details that slip are the ones that change care: how someone shows pain, the position they need to be in to eat safely, the early signs of a seizure that can look like something else, the medication that has never agreed with them.
Australian death reviews show where the gap sits. Some people who needed a communication plan had none on record. We mention that to show something families and providers can actually fix. A good deal of what clinicians need to know already exists in people’s heads. The job is to write it down where clinicians can find it.
Julian’s Key: Queensland’s own health passport
Queensland already has an official health passport, so you don’t need to design one from scratch. West Moreton Hospital and Health Service first developed Julian’s Key in memory of Julian Klass, a young man with intellectual and physical disability. Queensland Health adopted it in 2019, trialled it at Ipswich and Logan hospitals, and released a revised version in 2024 after about 18 months of consultation (Queensland Health, 2024).
Queensland Health describes it as a “consumer/carer-controlled tool co-designed with users to improve your care while in hospital.” The person decides what goes in. You can order a free printed copy through an online form or by calling 13 HEALTH (13 43 25 84), or download a fillable PDF to complete on a computer, tablet or mobile. Queensland Health is also working with users on a more user-friendly digital version, though it hasn’t announced a launch date (Queensland Health).
Plenty of families already use it. By the end of 2025, more than 5,150 printed copies had been handed out and about 6,300 digital copies downloaded (Queensland Government, 2026).
We recommend Julian’s Key over a homemade template. The reason is practical: staff find information faster in a layout they recognise. A review of 60 UK hospital passports found big differences in content and length, and key information was sometimes missing or hard to find (Journal of Clinical Nursing, 2017). A standard format fixes much of that. For a rare condition, add one extra page: a plain-English condition summary or emergency letter from the treating specialist, attached to the back.
What goes into a health passport for a complex condition
Before you fill in anything, ask yourself one question: if a nurse reads only the first page, what must they know in the first hour? Put that at the top. Communication, allergies, swallowing requirements and the emergency plan nearly always belong there. Favourite music and the story of the person’s life matter just as much for dignity and rapport, but they can come a page later.
The table below shows how we’d organise a passport for an adult with high-intensity support needs. The right-hand column matters most. Clinical sections should match what the treating professionals have written, not the family’s memory of it.
| Section | What to record | Who can help confirm it |
|---|---|---|
| About me | Preferred name, what matters to me, likes, dislikes, what helps me feel calm | The person, family, regular support workers |
| Communication | How I say yes and no, how I show pain or distress, any communication aids | Speech pathologist, family, support team |
| Diagnosis and history | Primary condition, other conditions, a one-paragraph plain-English summary of the rare condition | GP, treating specialist |
| Medications and allergies | Current medication list, allergies, how medicines are usually given (for example via PEG) | GP, pharmacist, nursing team |
| Eating, drinking and swallowing | Copy of the current mealtime plan, texture requirements, PEG feeding arrangements | Speech pathologist, dietitian |
| Seizures and emergency plans | Copy of the current seizure management plan, what is typical for this person | Neurologist, GP |
| Mobility and positioning | Transfer methods, equipment, pressure care needs | Physiotherapist, occupational therapist |
| Behaviour support | Summary of the positive behaviour support plan, known triggers, what helps | Behaviour support practitioner |
| Decisions and contacts | Guardian or substitute decision-maker, NDIS number, support coordinator, provider contacts | Family, support coordinator |
The swallowing row needs particular care. Death reviews of people with disability have identified aspiration pneumonia as a cause of death. If a speech pathologist has written a mealtime plan, put a copy of the actual plan in the passport rather than a summary of it. If you aren’t sure the plan is current, ask the speech pathologist or GP before you include it.
The same goes for seizure plans, wound care plans and medication lists. The passport carries the plans. It doesn’t replace the clinicians who write them, and any question about changing a plan belongs with the person’s doctor or allied health team.
Writing it with the person, not about them
A health passport belongs to the person it describes. That holds even when they need a lot of support to put it together. Start with them: what they want staff to know, what frightens them about hospital, what makes a good day. Plenty of adults with complex support needs will have strong opinions about what goes in, and those opinions come first.
For someone who doesn’t use speech, write their communication in their own terms. “Looks away and goes quiet when in pain” helps a nurse far more than “non-verbal”. Photos help too, of the person’s yes and no signs or of how they like to be positioned in bed. Ask several people who know them in different settings, because a parent, a day program worker and an overnight support worker may each have noticed different signals.
The most underrated field in any passport is baseline: what’s normal for this person. For degenerative conditions it matters even more, because the baseline moves. A clinician meeting someone for the first time can’t tell whether reduced responsiveness is a new problem or how the person has been for months. Write it down plainly, and date it.
A health passport is only as good as the last time someone updated it, and only as useful as the hand that puts it on the table.
Who holds the pen? Usually the person themselves with help from family. Support workers add day-to-day observations, and health professionals check the clinical sections. Our support team works under registered nurse oversight and alongside occupational therapists, physiotherapists, speech pathologists, dietitians and psychologists. With the participant’s consent, we can help families collect current plans from the right clinicians and point out when a section looks out of date. The decisions about what goes in stay with the person and the people they choose.
Keeping it current and getting it into the room
Hospitals don’t add Julian’s Key to the medical record automatically. Someone has to bring it, hand it over and ask staff to read it. Cairns and Hinterland HHS asks patients to bring care documents such as Julian’s Key or a positive behaviour support plan. It also notes that “your consent is required for NDIS and our health service to share your information,” and explains that this sharing helps it coordinate discharge with NDIS services (Cairns and Hinterland HHS). Sort out that consent conversation before an admission if you can, not in the middle of one.
An out-of-date passport can mislead, so tie reviews to events rather than to good intentions. We suggest reviewing it:
- after every hospital admission or emergency department visit
- whenever a medication is added, stopped or changed
- when a new mealtime, seizure, wound care or behaviour support plan is written
- when a guardian, support coordinator or key contact changes
- every six months even if nothing seems different, because slow change is easy to miss
Copies need to be wherever an emergency is likely to start. A passport in a kitchen drawer does nothing for someone being loaded into an ambulance. Keep current copies in these places:
- a packed hospital bag that also holds the person’s communication aids
- the support worker folder in the home or SIL house
- the primary decision-maker’s mobile, as a PDF or clear photos
- with the GP, who can help make sure My Health Record reflects the same key details
Put a date on every page and destroy old versions when you replace them. Two versions saying different things is worse than one.
When care means a transfer out of Far North Queensland
For families in Cairns and across the Far North, some admissions mean a transfer to Townsville or Brisbane. That puts a new team in front of the person, and sometimes family can’t travel straight away. This is when a passport earns its place. It travels with the person and briefs people who have never met them.
Support doesn’t have to stop at the hospital door. An NDIS support worker can go into hospital with a participant if both the NDIA and the hospital approve (Queensland Government). If a person’s function changes permanently during an admission, a separate NDIS hospital pathway can help put a new support plan in place (Cairns and Hinterland HHS). Questions about how either process applies to a particular plan are best taken to the hospital’s social work team, the NDIA or the support coordinator.
What a passport can’t do on its own
Be honest with yourself about what this document can do. A 2024 umbrella review found strong support for hospital passports as a low-cost way to communicate needs and secure reasonable adjustments. Evidence that they improve hard outcomes like length of stay or medication errors was thin, and the usual failures were passports going out of date, being left at home, and clashing with staff time pressure and clinical workflows (British Journal of Learning Disabilities, 2024).
Users rate them highly anyway. In the UK pilot, 72.2% of respondents said a passport made it easier to explain their needs to unfamiliar teams, although the follow-up sample was small (European Journal of Human Genetics, 2025). We’d read the two findings together. A passport improves the conversation. It can’t guarantee that anyone acts on what it says.
That’s why we treat it as one part of a set. The National Roadmap for Improving the Health of People with Intellectual Disability recommends health passports alongside better use of My Health Record (Australian Government Department of Health, 2021). Add a third part: a support person in the room who knows the participant, can point to the right page and can say, “this isn’t how she usually is.” With all three in place, a hospital stay can feel less like starting from zero each time, and families may find they finally get to sit beside their loved one instead of briefing everyone who walks in.
If you’d like to talk through how a health passport, high-intensity supports or a hospital plan might work for your family member, we’re glad to have that conversation. Call us on 0425 168 053, email [email protected] or use the contact page on our website. There’s no obligation, just a chat about what the person needs.
Can we use Julian’s Key if we travel or move interstate?
Julian’s Key is a Queensland Health tool, but the document itself goes wherever the person goes, and any clinician can read it. Other states and territories may have their own hospital passport formats, so it is worth asking the local hospital or GP whether they prefer a particular template. Many families keep their Queensland passport and simply copy the key details into the local format when they move.
Will an NDIS plan pay for help to put together a health passport?
There is no specific NDIS line item for a health passport, and whether any help is funded depends on the individual plan and the NDIA’s decisions. Some participants have support coordination or capacity building supports that can include help organising health information. The best step is to ask your support coordinator or planner how your current plan can be used, rather than assuming either way.
What if the person does not want some information in their passport?
The passport belongs to the person, so their wishes about what goes in should be respected. If something they would rather leave out could affect their safety in hospital, talk it through with them and their doctor so they can make an informed choice. Where a guardian or substitute decision-maker is involved, or there is disagreement, an independent disability advocate can help everyone work through it fairly.
Is a health passport the same as an advance care plan?
No. A health passport helps unfamiliar staff understand the person day to day, covering communication, routines, current plans and contacts. An advance care plan records a person’s wishes about future medical treatment and is usually developed with a GP or specialist. They do different jobs. The passport can note that an advance care plan exists and say where staff can find it.
