Navigating the minefield
I fall outside the norm. I live in a motorhome with no fixed abode. I had a GP in Maclean, first mammogram in Coffs Harbour, biopsy at Sydney Breast Clinic, 2 x surgery at Lifehouse, scan and drain at Goulburn then referred to Canberra for radiation. I chose Canberra because they have accom attached to the hospital and caravan parks in the city as a back-up. After reorganising my life to stay put for 2 months, I've just been told that the waiting list for Canberra radiation is 6-8 weeks so they have shunted me back to Sydney. Does anyone know which hospitals have accom attached to them as there are no caravan parks in the city. Has anyone stayed in the accom? What's it like? (the rooms in Canberra looked like cells).
"Can Assist" - Cancer Assistance Network, NSW - re accommodation, advocacy, assistance & resources
Can Assist has numerous branches around rural NSW and have a great list of resources that are available to Cancer Patients in NSW ..... over and above the ones that you already know about! https://canassist.org.au/cancer-assistance/#community They can also provide practical financial assistance too - and helped us out last year when my husband was diagnosed as Stage 4 - even paying a Council Rates bill on our behalf and giving us a Petrol Voucher and Grocery Voucher. https://canassist.org.au/cancer-assistance/ They are always canvassing the NSW Gov to improve (by reducing) the amount of paperwork required with completing & returning the IPTAAS forms (Isolated Patients Transport & Accommodation Assistance Scheme) whereby travel and accommodation can be partially reimbursed - if you've been knocked back on transport or accommodation reimbursement for any reason - they'd like to hear from you. They are advocating for more support for rural cancer patients in many submissions to the Govt ... with increased reimbursement rates and decreased paperwork ie, that IPTAAS referral should last as long as the illness (not requiring new IPTAAS referrals every 2 years) and reducing the number of signatures for a single appointment (sometimes up to 6!). eg there is NO NEED for a GP to sign off on a referral from your Cancer Specialist ..... as, apart from anything else - it is throwing money away (yours and/or the Gov if bulk billed) and it effectively reduces the amount you receive from IPTAAS, as you've had to 'pay out' to get it! RIDICULOUS! https://canassist.org.au/about-us/advocacy/ Jump onto these links above & see just what they are all about .... and what resources are available to us, here in NSW.Can you add more suggestions re travel & accommodation schemes in Australia
NSW Gov is asking for comments re travel & accomodation schemes - but, really, it relates to ALL states .... If you live in rural/regional/remote areas, make your concerns KNOWN to the powers that be ..... and JOIN OUR PRIVATE GROUP to share/agitate for better reimbursements! https://www.haveyoursay.nsw.gov.au/nsw-regional-health-plan?fbclid=IwAR1pSqCbCrPsargRf6xFxO817kIRjlrwB7Ll6evGRs1AOivg5VC9ZIaaWyU I reckon it is all of the above - as the hoops needed to jump thru for IPTAAS are ridiculous. 3 things that need to change asap - 1) ALL family members on the Medicare card should be able to contribute to the 200k a week travel required to access the payments - not each individual having to travel that amount themselves. 2) The specialist referrals for chronic/terminal conditions should last for the length of the treatment, not needing a new referral every 2 years. Either the patient gets better & the treatment/claims stop - or the patient passes away & the treatment/claims stop. 3) Essential Dental Treatment (eg extractions required before undergoing some forms of chemo) currently need to be done in a hospital to be able to make a claim (which takes up essential hospital beds) when they can be readily done in the Dental Chair .... THIS NEEDS to be changed - as we still need to travel for the service, but are not allowed to claim for it & it is an essential part of the patient's treatment. NOT having it done, can cause death or permanent disfigurement. And that is just the beginning ...... feel free to do the survey, tell them your ideas - hopefully some of them will be carried thru!Accommodation thru You Can Stay if aged 15-29 for rural/regional/remote cancer patients
As well as Fuel and Accommodation available thru IPTAAS (see Patients Assistance Travel Schemes - rebates & rules as at July 2025 | BCNA Online Network), I've only just heard about this service being available to those of us living in Rural, Regional and Remote areas of Australia ... the only proviso is that you or your child is aged between 15-29 at the time of the cancer diagnosis. This means the family can stay together in apartment style accommodation, to support the patient - for up to 6 months - which may be extended on a case by case reassessment after 5 months. https://www.sonyfoundation.org/what-we-do/you-can The You Can Stay Accommodation Scheme provides free accommodation to 15 – 29 year old cancer patients who live in regional and rural areas in Australia who need to travel to the major cities for appropriate cancer treatment services that are not available closer to home. This Scheme is supported by individuals, sporting groups (eg Tour De Cure) and corporations (eg Sony Foundation Australia) They ask that: When a patient is accepted on to the You Can Stay program, we ask that they, and their referring clinician assist with completing some forms for Sony Foundation to secure a rebate from the government to offset some of the costs (Patient Accommodation & Travel Rebate) eg IPTAAS/all state Travel Schemes. Check out all the Drop Down Menus here - (there are camps available for children with disabilities too.) https://www.sonyfoundation.org/youcanstay 'YOU CAN FERTILITY REFERRAL HUB' - Here you can find more information on fertility preservation options for cancer patients. You Can Fertility is a national oncofertility program for 13–30-year-olds in partnership with The National Ovarian and Testicular tissue Transport and Cryopreservation Service (NOTTCS) at The Royal Women's Hospital, Melbourne and Sony Foundation. https://www.sonyfoundation.org/youcanfertility Accommodation Information: https://d2xo9fq8pkrf30.cloudfront.net/726c4c84b39f4492760ee9ac26cbc685.pdf Quest Properties Supporting You Can Stay: https://d2xo9fq8pkrf30.cloudfront.net/6d7ec98748fc1d031e93d9985e750284.pdf Frequently Asked Questions: https://d2xo9fq8pkrf30.cloudfront.net/082d96a0c81ca7698f8715c187f3551a.pdf They even have Holiday Camps for children with a disability, to give the parents 'time out' .... https://www.sonyfoundation.org/what-we-do/childrens-holiday-camps Check out their most recent publication - SHOUT Spring 2025: https://d2xo9fq8pkrf30.cloudfront.net/e250387a59c4010e4635ff0e83c36b42.pdf Please share this information with your family & friends who live in Rural, Regional or Remote areas of Australia ..... it may be a wonderful support to them, if they need to travel to the Major Cities for cancer treatment
