FREE TUBE FEEDING EQUIPMENT THROUGHOUT AUSTRALIA
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Australian families are being forced to pay up to $700 a month for tube feeding supplies they desperately need just to keep themselves or their children alive. Even families of children with terminal illnesses are facing this overwhelming financial burden. At present, the amount of supplies provided free of cost varies depending on state, hospital, even which dietician you see. Having complex medical needs yourself or caring for loved ones with complex medical needs is extremely stressful and causes huge amounts of financial strain already, hence we believe that paying such high costs for the supplies to be able to feed yourself or your child should not be a burden these Australian families should have to deal with.
This week is Tube Feeding Awareness Week 2018 (5th – 9th of Febuary 2018). As part of this week tube feeders and their families in Australia, with the support of the Reflux Infant’s Support Association, are calling for universal access to free tube feeding equipment – regardless of state, hospital, condition, specialist or type of tube.
The following are just a few examples of the discrepancies found between and even within Australian states:
• Elvie is living with cerebral palsy and a terminal brain tumour. They live in New South Wales, so her mum pays $170 a month for formula and equipment, plus $200 for each tube change.
• River suffers from extreme reflux that he aspirates into his lungs and an oral aversion. Because he is from Western Australia his mum spends $500 per month on tube feeding equipment and formula.
• Emma (NSW) suffers from gastroparesis. When Emma (2) and her mum turned up at a major metropolitan hospital to have her first feeding tube inserted, her mum was sent away to the equipment shop to buy one before the procedure could begin. She then spent $210 per month to allow Emma to grow and thrive.
• Jaxon has a cleft palate and lives in Northern Queensland, his mum spends $50 per month on feeding tube equipment.
• Callum suffers from a variety of medical conditions including airway defects, severe reflux and respiratory problems. He and his family live in Brisbane, they spend $6 per month on tube feeding supplies. However In the same city, Karen spends $280 per month on Wini’s (8) tube equipment for her cerebral palsy.
• Ethan and his mum Madi live in Victoria, so they receive all feeding tube equipment for free.
Within states, Supply also varies depending on the type of tube used. For example, in NSW, generally
• nasogastric tubes and the associated equipment are unfunded
• Gastrostomy tubes and the associated equipment are usually partially funded, often for a period of 9 months out of the year, with families left to front the remaining costs for the year which could be up to $2000 dollars worth of equipment.
• Jejunal feeding tubes are totally funded year round.
We believe that access to basic needs like the nutrition needed to grow and thrive should be available to all Australian families. Whilst the NDIS will help for some of these tube feeders, the NDIS won’t cover “medical” tube feeding, which is a large percentage of tube feeding families. So River’s mum will continue to struggle to pay $500 per month. We believe the Australian Government needs to step up and help provided a universal standard of free access to tube feeding supplies, regardless of diagnosis, state or type of tube, because tube feeding is not a choice, it is a necessity for life.
Today: Reflux Infants Support Association is counting on you
Reflux Infants Support Association needs your help with “Hon Greg Hunt MP Minister for Health: FREE TUBE FEEDING EQUIPMENT THROUGHOUT AUSTRALIA”. Join Reflux Infants Support Association and 38,645 supporters today.