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"Can Assist" - Cancer Assistance Network, NSW - re accommodation, advocacy, assistance & resources

arpiearpie Mid North Coast, NSWMember Posts: 6,121
edited March 21 in Online Community Info
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.

Comments

  • jennyssjennyss Western NSWMember Posts: 1,477
    When I was having to travel for radiotherapy CanAssist helped us with petrol vouchers. It was such a relief and meant we could just keep our nose above  water. I am now a member of the Dubbo CanAssist group. I'm making fig jam to sell at our up-coming open garden day.  Like Arpie, I encourage BCNA network members to get in touch with CanAssist for information and practical support.
  • arpiearpie Mid North Coast, NSWMember Posts: 6,121
    edited March 21
    That's awesome, @jennyss - I understand that all the rural 'offices' are manned by volunteers & sadly, some close when the volunteers retire if no-one else puts their hands up  ..... so that's great that you have joined them & are also helping others.  Our closest office is 1/2hr away - and it was the hospital social worker that got in touch with them on our behalf.  I've been having some chats with them online, too. xx

    Do other states have a similar group, I wonder?
  • arpiearpie Mid North Coast, NSWMember Posts: 6,121
    edited April 25
    2 articles in the Sunday paper today ..... showing the additional price that rural people have to pay (on top of any gaps in fees) for getting 'access to decent treatment' ..... that perhaps those in cities may possibly 'take for granted' - as they rarely have to travel even 1/2hr for treatment or surgery and definitely don't have to pay for accomodation .... but it is 'not so' for us 'rural folk'.  When we arrived in rural NSW, the first thing we were told was - WHEN IN PAIN, TAKE A PLANE ..... 

    Can Assist is actively agitating the NSW Gov for more realistic 'assistance' in both fuel and accommodation costs.

    Just by including 'everyone on the Medicare Card' to be eligible for the weekly Kms covered for compensation .... would be a start, instead of every person on the card individually having to do the 100kms a week to qualify.  We've been affected by this stupid rule, big time, since my husband became seriously ill 15 months ago .... with many trips being denied compensation.  eg - he had to have an abscessed tooth out before he started the stronger chemo in Dec (as necrosis of the jaw can occur if the extraction occurred after he started the new chemo ...) and had to go to a town 1/2hr away to have it done - but IPTAAS will only contribute to fuel costs if the extraction is done in a hospital, not at a dental surgery - and the travel covered had to be in excess of 200km within a 7 day period to qualify .... as it was, he had to have 2 trips & we only cracked 90km X 2 = 180KM ... but the week before he'd been to hospital on 2 occasions (another 90km X 2 = 180), but they couldn't be added to the dental 180km ....... We had 5 weeks of 'overlapping' trips to the closest hospital/treatment including a 4 day stay in hospital - but none of them equated to the 200km per week, so all trip expenses (7 of them) were denied even tho there was about 500km involved.

    Tommy's parents were left WAY out of pocket for them being in Newcastle to support their son ...  basically, IPTAAS says that travelling to be with their ill child is almost considered a 'holiday' - so not eligible for any compensation .....   

    Can Assist very kindly jumped in and paid for the shortfalls ..... Please read these articles .....



    When we DID get travel 'in excess of 100k a week' and 2 nights accommodation - they stuffed up the application & didn't process the accommodation component - so numerous emails were required to rectify that .... and that was only because I tried to work out 'what they'd paid' and it didn't add up (they don't readily tell you what the payment is made up of ...) 

    Most older folk just don't even bother applying .... as it is just so confusing and time consuming, for such little 'return' - and many are not computer literate.  They are impossible to contact by phone & you never speak to the same person twice.

    I am amazed at the ridiculous requests - like getting my Radiation Oncologist to fill in a Referral for the 'random person' who happened to be working on the day I had my recent Ultrasound Recalls ...... I already had the 'trip dairy' filled in and signed by the Radiology Clinic on the day (that has sufficed previously with claims over the last 4 years) - but suddenly that wasn't good enough - I now had to contact my specialist to fill in yet ANOTHER form with the 'specific radiologist' name on it (which was ON THE TRIP DIARY along with her ID number) - which was a total waste of her time, when she always has many very sick patients requiring her attention.

    PS ... MAKE SURE YOU KEEP COPIES OF EVERYTHING THAT YOU SEND IN, too - cos they lose them!!



    Centrelink isn't much better - they tell you to upload documents to their site during covid (rather than going to the Centrelink Offices) and then don't check the documents.  I had my pension stopped  for 2 months because they hadn't checked the documents that I'd loaded up for them, twice (same ones!)   grrrr
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 697
    Hi @arpie,
    thank you once again for all of this information, I had not heard of canassist until now, we do not have anything like this in SA, I did have occasion a few months ago to ring the cancer council sa to try and get some financial information, they were great, they put me in contact with a financial adviser,I had already told them I was unable to travel so it would have to be via phone, which they did,it was on a pro bono scheme, so I did not have to pay for it, mind you, I had to answer a lot of questions prior to see if I was eligble,which I was, we also have the pats system here in sa but again requires a lot of work and if I need to go to the dental hospital in Adelaide thats not covered.I had quite a invigorating conversation with them regarding paying me for radiology visits for scans, they wanted my oncologist or gp to pre sign each form, any way I got that sorted and do not need any forms to be signed prior once I had explained everything to them.
    I do think the amounts paid need to be reviewed as it 
    certainly is not enough with petrol prices what they are and accomodation, we are a 4 hour sometimes nearly 5 away from hospitals and accomodation, I am grateful we do get something, I just think it all needs re looking and and dont get me started on the carers allowance that my partner gets that is dismal and almost an insult to all the men women and children who look after their parents 24/7.

    wendy55
  • arpiearpie Mid North Coast, NSWMember Posts: 6,121
    I hear you @wendy55 - I am so pleased that you received some help from the Cancer Council and don't have to continue all those bloody forms being filled in .... 

    I have asked Can Assist if they are aware of similar groups available to rural Cancer Patients in other states. xx

    It was the hospital social worker that put us onto Can Assist late last year & they helped us with a fuel & Woollies voucher & they paid a Council Bill  .... we'd never heard of them before, either.  So maybe check with your Breast Care Nurse to see if they are able to check into it?   When I was having my Rads in 2018, the Hospital social worker put me onto the Cancer Council when I got that $500 bill for my own pathology that wasn't covered by medicare & it just broke me (not covered by private health care either ...) and they paid for that. To this day, I still don't know why it was knocked back by medicare .... 

    When they knock you back - IPTAAS sends you an email with an attachment to open, to read why you've been knocked back - another inefficiency, when they could have just copied it directly into the email ..... and then the attachment wouldn't open on my laptop - so I had to go back to the desktop ...    I received 7 of them in a week - most of them sent to my husband's obsolete email address, even tho I'd asked for all communications to come directly to me! grrr

    NSW IPTAAS currently requires EVERY specialist you see to have a NEW referral form from the GP/Specialist every 2 years (and you are supposed to remember the dates!) whether the patient is Stage 4 or not .... which is just more unnecessary paperwork for the rural patient (and unnecessary expense for multiple visits to the GP for said form to be signed as they never 'come due' at the same time!)  Every referral should be for the length of the illness (if they get better, we won't be submitting repeat Trip Diaries anyway) or until the patient has passed away - in which case, no more submissions either!  Even if a 'code' was needed for submissions to tie it back to that 'permission' .... 

    I missed out on all compensation in 2010 with hubby's first surgery/chemo etc as I was just so tied up with his surgery, recovery, chemo, recovery etc and was emotionally & physically spent anyway ... as there was a one year limit on the time you could submit the paperwork & I was 2 weeks too late, so it was denied. ..... (Now it is 2 years that I believe that you can submit it ....). So make sure you double check that too!

    If you stay in private accommodation whilst undergoing treatment, you can also claim $20 a night - I bet you've done that before, Wendy? .... but this was never explained to me, so I never claimed for it either!  It is like 'secret business' - don't tell anyone, or they might make a claim! .... when it should be made available to EVERY rural patient, once it is determined that they will need to travel to get decent treatment that most city folk take for granted, as it is already available on their doorstep.

    Like you, I appreciate everything we 'get' - but when it is mishandled & made almost impossible to access - they've got it wrong.  Someone needs to do a spreadsheet of actual rural patients requiring 'outside' treatment vs actual claims!  They will be stunned that most don't even bother claiming as they've made it SO difficult to do so!

    I am my husband's carer too - I recall being given the 3rd degree, to sign up for it!   

    If politicians were being paid $20/40 a night towards THEIR accommodation expenses, they would be screaming!
  • arpiearpie Mid North Coast, NSWMember Posts: 6,121
    edited April 26
    In discussion with Can Assist - it would appear that there are many 'sub groups' both in rural NSW and interstate towns that deal with 'specific cancers' (eg prostate, breast, bowel to name a few) but Can Assist is the only one (other than the Cancer Council which are usually city based) who assists those in  ALL rural areas, with ALL types of cancers in a meaningful, financial way.

    They have indicated that if any rural town in any state knows anyone who is keen to volunteer for a Can Assist Office in their town - they would be happy to help them set it up - after checking the various state laws & regulations in case they are different to NSW.  They are really keen to get an office set up in Broken Hill, for example - but it needs feet on the ground, in the town to kick it off ..... anyone interested (in any state) can contact them via the website: https://canassist.org.au/

    Please note that this is NOT an election sales pitch - it is about the current NSW Parliament member and her experiences with assisting patients in rural areas.

    In NSW,  Bronnie Taylor (NSW Minister for Women, Regional Health and Mental Health) was one of the original Breast Care Nurses in the Cooma/Monaro area and also helped kick off fundraising to set up a dedicated Oncology Unit in Cooma - which she was told at one stage, would never happen.   She knows her stuff from a grass roots level and will have seen the financial stress put onto rural families (as seen in the newspaper clippings above) first hand.  

    Govt budget negotiations are going on now and Can Assist are really hoping for some changes to be announced by the end of June! 

    Bronnie Taylor has spent QUOTE: eight years as a clinical nurse specialist in palliative care, both in the city and the Monaro, three years as a clinical nurse consultant in cancer care, and four years as one of the original Breast Care Nurses for the McGrath Foundation. UNQUOTE

    She also says: QUOTE: I felt so acutely that my patients were not getting the services they required or receiving the treatment they so desperately needed as close to their homes and their families as possible.

    Country people are so stoic—incredibly so—and this is something that struck me when I made the move from the city to the Monaro. It was because of my patients that I set about lobbying for a local oncology service. I knew we could safely deliver chemotherapy locally and that this would contribute greatly to the treatment options and experiences of our local patients.

    I approached the health service with my ideas, based on evidence that patients who live outside the metropolitan centres have poorer health outcomes, often because they choose treatment options that will not take them away from their homes or their communities but that do not reflect best practice.

    For example, a rural or regional patient will choose to have a radical mastectomy instead of breast-conserving surgery partnered with chemotherapy and radiotherapy so that the time they are away from home is minimised. I must make myself clear: I do not advocate for being able to deliver all specialised health services and treatments in the regions—we want the best specialists providing the best treatments in the best environments. But the services that we can provide to the highest standards locally should be absolutely delivered locally, and there is no doubt that this can be done with many cancer treatments. UNQUOTE

    I recommend you read her Opening Speech in Parliament here, and see how passionate she is for better health outcomes for those of us in rural areas.  She outlines her nursing/advocacy for rural groups here (particularly on pages 2 & 3 which relates to her nursing & experiences with cancer patients):
    https://www.parliament.nsw.gov.au/member/files/121/Hon Bronnie Taylor - Inaugural speech.pdf

    It is just fantastic that we have women of her calibre putting forward the fight for better services for rural people across the whole range of health issues - not just cancer.

    SO .... if you live in rural NSW and have (or know anyone with) financial difficulties due to their cancer treatments away from home, please make contact with them at the website above - or message them directly (as I have been doing) on Facebook:  https://www.facebook.com/CanAssistNSW1.  They usually reply within an hour or so during working hours.

    These are the towns in NSW that Can Assist is currently servicing with volunteer-manned offices ..... as you can see - Western NSW and the South Coast, Central Coast & North Coast areas of NSW is not well represented ..... yet

    cancer support nsw
  • arpiearpie Mid North Coast, NSWMember Posts: 6,121
    edited May 23
    Another article in today's Sunday Telegraph about rural patients difficulty in receiving access to quality treatment, without great financial loss ..... I hope Labour comes to the party with rectifying this.

    I don't know about other states - but NSW  IPTAAS reimbursement really needs VITAL updating/upgrading to realistic levels .... 

    To make the pic 'bigger' to read, click on 'control or command' AND the pic - and choose 'open in new tab'.  Go to the new pic - Then you can make it larger by clicking on 'Command +' to enlarge it.


  • arpiearpie Mid North Coast, NSWMember Posts: 6,121
    GOOD NEWS - ABOUT BLOODY TIME!!!

    A wonderful morning in Dubbo with Deputy Premier Paul Toole and Minister for Western NSW and Local Member Dugald Saunders announcing a significant boost to the Isolated Patients and Travel Accommodation Assistance Scheme as part of the NSW Budget.

    For the first time, the scheme will be expanded with patients seeking non-commercial clinical trials, high risk foot clinics, highly specialised publicly funded dental health clinics and ocularists to be eligible for assistance.

    The subsidy for people requiring accommodation will be almost doubled, while the NSW Government will also nearly double the private vehicle subsidy rate from 22 cents to 40 cents per kilometre for patients who have to travel more than 100 kilometres for care.

    Following months of lobbying by the Regional Accommodation Providers Group (RAPG), of which Rotary Lodge Port Macquarie is a member, and Can Assist, the Minister for Regional Health announced changes to the Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) rebates for rural and regional patients today.

    The main changes are:
    1. Increase in travel rebate from 22c/k to 40c/k for patients who live 100k from the facility or specialist or who travel more than 200k in a week visiting the facility or specialist.
    2. The single rebate has been abolished saving many single patients hundreds of dollars.
    3. The rebate for the first seven nights is now $75 (up from $43 a single and $60 a double)
    4. The rebate for stays of eight days or more in a financial year is now $120 (up from $65 a single and $85 a double)
    5. There is no difference between the rebates for commercial and not-for-profit facilities.

    The changes to IPTAAS will result in significant savings for many rural and regional patients. 
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