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Sophia's story Sophia Grace was born with the rare genetic condition Aperts Syndrome. Raising awareness of Sophia & others that are effected by rare genetic conditions

For those following along with our PTAS Journey. This was the response I received. I feel like we have not been heard an...
06/07/2026

For those following along with our PTAS Journey. This was the response I received. I feel like we have not been heard and this is what I have replied….

Dear Hon Bridget Archer MP,

Thank you for taking the time to respond to my correspondence regarding the Patient Travel Assistance Scheme (PTAS) and for acknowledging the complexity of Sophia’s medical condition. I appreciate your recognition that families caring for children with lifelong, complex medical needs face significant challenges.

However, I feel that the central concern I raised has not been addressed.

My letter was not simply about one PTAS application. It was about the suitability of the current PTAS process for children with permanent, lifelong conditions who require ongoing interstate specialist care.

Sophia has Apert syndrome. This is a lifelong genetic condition that will never change. She has been under the care of the Royal Children’s Hospital in Melbourne since birth and has undergone more than 50 procedures. She is treated by numerous specialist teams including ENT, Craniofacial, Plastic Surgery, Respiratory, Dental, Neurosurgery and others. This level of care will continue throughout her childhood and into adulthood.

The current PTAS process requires us to repeatedly obtain new referrals and complete separate applications for each specialist every 12 months. While I understand the importance of accountability for public funding, this approach places an enormous and unnecessary burden on families and on our already stretched healthcare system.

Every year we must return to our paediatrician simply to have referrals rewritten for specialists who have treated Sophia for many years. These appointments take valuable time away from other patients who genuinely need to see their paediatrician for diagnosis or treatment. The paediatrician must then spend additional time preparing referrals and completing paperwork that provides little new clinical information because Sophia’s diagnosis and need for specialist care have not changed.

The administrative burden does not end there. As parents, we are then required to complete numerous PTAS applications—often close to ten separate forms—because each Melbourne specialist requires an individual referral and assessment. This means repeatedly providing the same information, despite the Department already having extensive records confirming Sophia’s lifelong diagnosis and ongoing need for interstate multidisciplinary care.

This process consumes valuable time for families, medical practitioners and PTAS staff alike. It is difficult to see how repeatedly recreating the same paperwork each year represents the most efficient or effective use of limited healthcare resources.

I was encouraged to read that the Department is reviewing PTAS processes. I sincerely hope that this review considers more practical arrangements for patients with permanent, lifelong conditions.

For children like Sophia, it would seem far more appropriate to allow a long-term approval or a simplified renewal process that recognises an established diagnosis and ongoing specialist treatment plan. This would reduce unnecessary administrative work, ease pressure on paediatricians and hospital staff, improve efficiency within PTAS, and allow families to focus on caring for their children rather than navigating repetitive paperwork.

I respectfully ask that this issue be genuinely considered as part of the current review. Families managing lifelong complex conditions deserve a system that recognises the reality of their circumstances rather than requiring them to repeatedly prove what is already well established.

Thank you again for your response and for considering my feedback. I hope that meaningful changes can be made so that future families experience a system that supports them rather than adding to the challenges they already face.

Yours sincerely
Anita ILES

We wanted to provide a quick update following our recent post about our experience with the PTAS system.Firstly, thank y...
30/05/2026

We wanted to provide a quick update following our recent post about our experience with the PTAS system.

Firstly, thank you. We were completely overwhelmed by the response. The number of families who reached out to share their own experiences showed us that this issue is much bigger than just our family. Reading your stories was both heartbreaking and validating, and it highlighted just how many Tasmanians are facing similar challenges when accessing essential interstate medical care.

Since sharing Sophia’s story, we have been contacted by several people in positions to help make change. We have now signed the necessary consent forms to allow access to Sophia’s medical records and circumstances so that a review can be undertaken into our experience and, more broadly, the PTAS process itself.

While we know change doesn’t happen overnight, we are hopeful that our concerns are being heard and taken seriously. If Sophia’s journey can help shine a light on the barriers faced by families caring for children with complex medical needs, then sharing our story has been worthwhile.

We want to make it clear that this was never about one staff member or one individual. It is about a system that appears to be creating unnecessary stress, delays and administrative burdens for families who are already navigating some of the most difficult circumstances imaginable.

Thank you again to everyone who shared, commented, messaged us privately, and supported us. Your voices matter, and they have helped start conversations that we hope will lead to meaningful improvements for families across Tasmania.

We will continue to keep everyone updated as things progress.

❤️ Anita & Sophia

Hey all, we have had a pretty crappy experience recently so I wanted to share this publicly and hopefully bring it to th...
27/05/2026

Hey all,
we have had a pretty crappy experience recently so I wanted to share this publicly and hopefully bring it to the attention of some politicians in hope to shed some light on the current system for families like ours having to travel interstate regularly.

To Whom It May Concern,

I am writing as the mother of a 12-year-old daughter living in Tasmania with a rare genetic condition called Apert syndrome. Since birth, my daughter Sophia has required ongoing specialist medical care through the Royal Children’s Hospital in Melbourne because the care she requires simply does not exist in Tasmania.

Over Sophia’s lifetime she has undergone more than 50 procedures and surgeries involving multiple specialist teams including Craniofacial, Plastics, ENT, Respiratory, Neuro, Cardiac, Tracheostomy Clinic, Dental and many others. These surgeries are not optional. They are not cosmetic. They are life-changing and, at times, life-saving procedures that have been essential to her quality of life and ongoing health.

Recently, Sophia and I travelled to Melbourne again for multiple surgeries under one anaesthetic. What was expected to be a short admission turned into a week-long hospital stay due to complications, followed by several additional days in Melbourne before she could safely be cleared to fly home.

Before travelling, we followed the required PTAS process and had forms completed by our paediatrician confirming the need for interstate treatment. We paid upfront for our accommodation and travel ourselves, as we have done many times over the years.

What followed after returning home was one of the most stressful, disheartening and degrading experiences I have had as a parent of a medically complex child.

First, I was questioned about why no outbound flight details were included. I explained that we had used Virgin travel points for the outbound leg of the trip and were therefore only claiming accommodation and the return flight home, I was then told I was no longer in the system because we had recently moved house and had to drive back to the hospital with identification.

The following day I received another phone call advising that the reason written on the form by our paediatrician was “not good enough” and that the procedures would need to be assessed to determine whether they “could have been done in Hobart.” I was then told I would need entirely new forms completed for each individual specialist team Sophia sees, requiring detailed explanations of every surgery and justification for why Tasmania cannot provide the care.

I have now also been told I will need to try and secure another appointment with our paediatrician to have the forms redone and complete additional paperwork ahead of our next appointment in Melbourne next Friday. This is simply unrealistic. Paediatric appointments in Tasmania can take months to access, and families should not be placed in impossible situations where essential administrative paperwork depends on specialist appointments that are already incredibly difficult to obtain.

This process is not only unreasonable — it is cruel.

Families like ours are already carrying the emotional, physical and financial burden of caring for children with lifelong complex disabilities. We are managing hospital stays, surgeries, recovery periods, time away from our other children, missed work, accommodation costs and the constant stress that comes with caring for a medically vulnerable child.

To then be treated as though we must repeatedly “prove” our child deserves access to specialist care is humiliating and exhausting.

Sophia has a permanent condition. Her need for interstate specialist care is lifelong and well documented. Yet every year families are forced to repeat the same paperwork, attend additional GP or paediatrician appointments purely for administrative purposes, and burden already overstretched specialists with forms that provide information the system already knows.

It wastes valuable appointment time for doctors, delays care for other patients waiting to be seen, and places unnecessary stress on families already at breaking point.

The PTAS system, in its current form, feels designed to wear families down until they simply give up claiming reimbursements they are entitled to. In fact, many families, including ours, rarely even use PTAS because of the barriers, stress and drama involved in making what should be a simple claim. More often than not, we fund these trips ourselves simply to avoid the additional emotional toll.

No parent chooses to repeatedly leave their home, their other children, and their support systems to travel interstate for major surgeries “for convenience.” We do it because we have no choice.

Tasmanian families caring for children with rare and complex medical conditions deserve compassion, dignity and a streamlined process that recognises long-term medical realities instead of forcing parents to continually fight for support.

I urge all elected representatives and decision-makers to review the PTAS system, particularly for children and adults with permanent complex conditions requiring ongoing interstate specialist care. There should be long-term approvals for lifelong conditions, simplified renewal processes, and recognition that specialist care provided interstate through tertiary hospitals like the Royal Children’s Hospital is clearly not available locally.

Families already have enough to carry without battling bureaucracy every single year.

Sincerely,

Anita Iles
Tasmania

Address

Hobart, TAS

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