Finding accomodation during treatment

[strong]

I am from the Far South Coast and had to attend POW for 6 weeks radio - too far to make regular trips so stayed the entire time with my daughter. My question is this - a) had my daughter not been available how does one generally find out about facilities when one lives so far away. b) on similar vain - big Sydney hospitals seem to have no concept of distance patients travel for treatment as there is NO indication on the forms how far ie in Km - one travels for appointments - only the name of your town which in my case is obscure. eg they thought I would pop home for the weekends - 4 hours one way, bad bladder and bowels and feeling so-so. ( as I am a widow this was not very likely ).

[mangosalad]

Hi Strong, this is precisely the problem we are working on at Cancer Council. To answer your questions, a) it's not in anyone's job description in the Health Department to help people arrange transport and accom so every hospital approaches it differently.  It's very time consuming and gets de-prioritised. It's an area we will be attempting to improve with a trial service early next year. b). Yes that's true big city hospitals can be impersonal places particularly for outpatients.  Ideally there would be a lot more care in healthcare. Please post again or use the private message function next to my name (mangosalad) if you would like to work more on this with Cancer Council.

[Annie]

We've been to PA in Brisbane and now Port Macquarie, both hospitals help with accommodation, via IPTASS, fill in a few forms and there's a set fee that is refunded... they even pay per kilometre

[jenny]

I was reading message about Port Macquarie. I attent a support group which meets very Thursday at the Rotary Lodge most of the people who attend are having treatment but there are few who have had treatment at other centres.  My treatment was at the Mater in Newcastle but I have settled in the PM area.  I find thish group very helpful and have made some very nice friends.  Regards jenny

[ArnZo]

Hi all Just floating around the website and wanted to post a message about Lilier Lodge in Wagga Wagga. I stayed with my rellie who was receiving radiation at the Riverina Cancer Care Centre in Wagga and can't speak highly enough of Lilier Lodge. Their fees are set at the IPTAAS amount ($36 single per night), so you can still put in your IPTAAS form at the end of the treatment and hopefully get a full refund... but even if you don't, then at least $36/night is affordable. Lilier Lodge is not very old and was built by the Cancer Council on community donations. It's a single storey building and great facilities.  The rooms can seem quite sterile/like a motel room, but there are great recreational facilities and a communal kitchen/dining area. Christine, the manager and other staff of Lilier Lodge are available to talk to and are very emotionally supportive. They are also great at giving you the good oil on Wagga so you know where to find places, shops, the all important Medicare office etc etc. My mother in law was hospitalised with bad reactions to the radiation, and both Lilier Lodge and onco nurses at Riverina Cancer Care Centre were wonderfully supportive during that difficult time. Coming from Canberra (Cbr radiation oncology were renovating at the time and had a waiting list), the emotional support and advice they gave us were invaluable.  A bus was also run to and from the lodge and cancer centre, so that patients were easily transported.  It was only about a 10min walk, but not viable to patients who were knackered from their treatments. My mother in law is getting her second dose of palliative radiation in Canberra this time, and being a much bigger unit, it is not a personal experience like it was in Wagga.  Plus the parking is atrocious so we drop her off at the entrance and spend 10mins looking for a park. Hats off to Lilier Lodge! 

[Krista]

I know this is old but I just wanted to reiterate how difficult it is. I am 3 hours from our hospital (we attend at least every 6mo) and on my husbands last big surgery, I ended up forking out $700 out of our savings. Due to the fact that IPTAAS gave our last reimbursment to my husband's brother and mother (who, stole the money and pocketed it and lied until we told them we knew they had received it), we were still hurt and never claimed. It is very difficult. In a sense, I am now lucky that our son will be having scopes and so we should be able to stay at the Ronald McDonald house and have my husband's scopes scheduled at the same time. I am working part-time. My husband has attempted to study but has had to defer 3 times over the last 3 years and isn't getting anywhere and I am unable to hold a full time job due to caring for him. So we are both currently on centrelink payments. I think we may have to go for Carer's allowance now that our son has been diagnosed as the constant trips to hospital are really taking a toll on our budget.