Things I Wish Someone Had Told Me
Five years of things I found out the hard way
... by Jenni
This is not about ripping off the system or getting things you are not entitled to. Sometimes we want normality and don't want to admit it is a big job - over time this info will be very helpful. I am not on retainer or anything from any of these companies listed but think you should be able to access them without hunting around forever for things that will make life easier. You may find one thing or ten things that help or make life easier - good luck.
- Do not leave hospital without at least one waterproof mattress protector; you can get good terry top ones thru RCH EDC (see below for details). You will have bags leaks at night - hopefully only rarely.
- Do not leave hospital without asking a Doctor for an explanation of an 'obstruction' and what action you should take should you have one. Not everyone does have one but it is info you should be aware of.
- MEDICATIONS - Before leaving hospital check what the hospitals policy is about pharmacy medications i.e. The Royal Children's in Melbourne has a policy that if the child has a Health Care Card which they then qualify for PBS pricing on meds, then all meds whether they are PBS or not are charged at that price. So it is cheaper for us as we live in a regional area to organise for Doctors to send the scripts internally to the pharmacy and get them to mail it to us, we are charged postage but are still well in front.
- ENEMA APPLICATORS - These are all made in adult size applicators, in any other context these would be classed as abuse! Some children at so traumatised by having used these that there is no way anybody could do further treatments in this area without them being sedated. Another option which we should all be told about sooner rather than later is decant the meds into a large catheter tip syringe and use a syringe and fine catheter to insert the meds with the aid of SurgiGel. The Doctors just don't get it, but they don't have the job of administering it. Speak to a stomal or continence nurse for advice on which size syringes and catheters to order. You can get a minimal amount monthly on the Stomal Scheme, I get mine through the NSW PADP Scheme or you can which I did in the beginning buy them direct thru RCH EDC.
- CENTRELINK - Preferably before leaving hospital, speak to a Social Worker about arranging paper work for a Health Care Card & possibly Carer Allowance and/or Carer Payment from Centrelink. The Health Care card makes lots of difference to expenses down the track. If knocked back about Carers you can appeal or reapply at a later date - apparently it is standard practice to have to appeal. You may also qualify for discounts on power and gas if you have this paperwork and if your child has problems with chronic pain you can get a further discount in NSW if the Doctor signs the appropriate forms - these forms are generally hidden within the power company's websites and may need to be asked for over the phone.
- LOCAL COUNCIL - With the extra rubbish from packaging from supplies and meds each month you may find you need an extra rubbish bin to deal with the waste. A lot of local councils will supply you with a second rubbish bin at no additional charge. You need to speak to your local government about this, most will require a letter from a Doctor to say that "because of a medical condition extra waste is generated from the packaging of supplies and medications & that none of the waste is hazardous medical waste". Depending on council, you may have to resend the request annually.
- RTA/VICROADS/LOCAL COUNCIL - Depending on where you live you -depends on who you have to apply to. You may be able to get a disabled parking permit, this allows you to also park in areas with defined time for a longer period (you don't have to park in the disabled ones if you don't wish to). Very handy when you have a leak while out or need to carry your child into a medical appointment when they are ill, or the wait at the Doctor's or hospital is a lot longer than planned.
- SCHOOLS - Stoma kids will generally have access to an aide at school to help them with their bag changes - depending on age. Unfortunately, it is not uncommon for children with chronic illness (not just Stoma kids) that they may need to find the right school for their kids. Aides are available in both public and private schools. Kids can have access to change rooms, disabled toilets, drink bottles on their desk, help with bag changes, but it will always fall back to the attitude of the staff as to how well they adapt to school life.
- VIBRATING WATCH - A company called tabtimer (www.tabtimer.com.au) make a wonderful medical alert watch. Cost about $130 on 2099. Both my son and staff at his school have found it fantastic. It can be set for numerous alarms during the day with either an audible and or vibrating alarm. My son is six years old it vibrates just prior to lunch and recess breaks and he goes off to meet the aide to get his bag changed. The teacher is not worried about watching to clock all session to send him off, he can quietly put his hand up leave the room and be back as the bell goes for the break and go off to play with his friends. The timing is to try to minimise embarrassing leaks in the playground, so he is out there with an empty bag at each break.
- LOTS OF DIFFERENT APPLIANCES - Some people unfortunately leave hospital with inappropriate products for their child and are unaware there are other options. Don't be scared to sit down with your stomal nurse and ask to see other products or ask them for a list of the companies - they will have brochures or flyers in their office and then contact the companies ask for samples and then you can order each month the right bags for your child. Larger bags for the stoma and small bags for a fistula, etc. As your child grows the type of bag required may also change so keep in contact with them for the best products available.
- TRAVEL SUBSIDIES - Depending on which state you are from there are various schemes to help with the cost for travelling to Medical appointments Victoria - VTAS, NSW - IPTAS; a social worker at your hospital or your local GP can give you the info in the first instance. Each time you travel (most states it must be over 100kms) you need a form signed by both your referring Doctor and your specialist. The paperwork is a pain and it is worked out on cents per km but over a long illness it all helps. When you have pre approval you can claim flights but it must be approved by both your Doctor and the government scheme prior to flight and you need a pre-approval number or you will not be reimbursed.
- CONTINENCE PANTS - Some children experience minor incontinence or leaking from the rectum that hasn't been closed which makes daily life 'challenging'. There are great little pants available called Conni's. They come in various sizes for very young children right thru to adults. They can also be purchased thru RCH EDC or check with your local stomal/continence nurse as the whether you qualify to get then on a government scheme. Try ringing Continence Australia in the phone book.
- GOVERNMENT SCHEMES - Different states have different schemes Victoria is not as easy as NSW as in NSW there is a PADP (Personal Appliances for Disabled People) with a co payment of $50 every six months we can get numerous pairs of Conni's and catheters and syringes for medications. Don't be scared of asking more than one person about what is available you would be amazed at info that you think the professional should know and doesn't or chooses not to pass on. Not all schemes are asset tested as some people would like you to think so it doesn't hurt to ask.
- HELPLINES - as always happens a problem usually doesn't occur during business hours, some of the stomal appliance companies have 24 hour help lines so there may be help available through a stomal nurse on the other end of the phone if you need it.
- SPORTING ACTIVITIES - Stoma kids can still play sport and have fun like everyone else. Something that we got made up for the rough and tumble of contact sport was a neoprene (wetsuit material) belt from the Prosthetics Depertment at RCH. It goes around the waste and covers the stoma with a plastic cone enclosed in the belt that raises above the stoma, so as not to squash it but to also protect it from whack with a ball or other blunt force, it has sort of been modelled on 'port guard' for kids who have plastic ports inserted for feeding etc. There is a stretchy belt on the stoma scheme, both are good for swimming, wearing a belt over a freshly changed bag will help it hold on much longer, no belt and the base plate usually lifts off the skin must sooner than you would prefer.
- RONALD MCDONALD - Although hard to get into, Ronald Mc Houses can help with accommodation for families who travel long distance to hospitals. It is worth looking at their website for the Ronald Mc Beach House program - after a long drawn out period of illness a week at a beach house can be just what the family may need. You need to access their website and will need to either provide your Doctor's details or get them to sign the form; I think it differs from state to state. Ronald Mc also have an Early Learning Program where should the child have missed a lot of school they can help with a qualified and screened tutor to help with catching the child education back up over a period of time. All are worth looking at.
- ALWAYS BE LISTENING - You never know where you next life altering tip comes from. I found out about Conni's by looking up a number in the phone book and hit the wrong page and saw Continence Australia, thought I would ring them and explain my situation within a short time I had the paper work organised and was saving about a $100 a month by getting onto the NSW PADP scheme and getting syringes, catheters and Conni's. We came across the Neoprene belt from sharing a room in hospital with a kid with a total different illness. A parent of another hospital room mate put us onto Ronald Mc Beach Houses. One very special mother in the early days in hospital was a great mentor about how to still be a mum in the hospital environment and just let the medicos do what they need to but you can still do the rest - THANKS MAUREEN.
- EDC - MAIL ORDER - many things can be sent mail order. I have found that EDC (Equipment Distribution Centre) at RCH (Royal Children's Hospital Melbourne) have a huge amount of things available. You do not need to be a patient of the hospital and you can go in an purchase or mail order (phone 03 9345 5325) if you ring they will send out a catalogue the lovely, lovely girls in EDC are great and happy to explain things if you can't follow the catalogue. They have a doorway right by the car park entrance in Gatehouse Street. Things that we regularly get are - terry top waterproof mattress protector, Surgi Gel - for catheter insertion, Nappy Goo - great for rashes around bottom or around bag leaks, blueys by the box - much cheaper than Huggies Nappy mats from the supermarket, Urine Free Laundry Spray - good for when the bag leaks (urostomy or colostomy) on clothes or bed, Ozium air freshener about the size of a marking texta - great for when you are out and have to change or have a leak in a confined space, Microshield anti bacterial gel pump bottle, Aquim small purse size antibacterial bottles. All prices are a lot less than the local chemist.
- A DOCTOR'S ADVICE - something I am sure he has regretted saying. "You are his mum and it is your job to stand up for him, sometimes you will have to stand up to me but if you do I will listen".
- DON'T BE AFRAID TO QUESTION WHAT'S HAPPENING - many Doctors have never even seen a stoma in their working life, should you feel uncomfortable about something, question it - I have even made an emergency Doctor in a regional Hospital ring our Surgeon in Melbourne before doing a procedure because it didn't feel right. It is a huge job to be your child's advocate in an unfamiliar situation. I was once told by a Doctor “You will know this better than we will so you need to be involved “.
- FOOD COLOURING - This is hilarious, a small blue iced donut can turn the contents of a bag fluoro green or some other colour unique to your child - quite strange first time around! Don't freak out at the bright red after tomato soup, you will learn to back track what they have eaten and you will laugh but the first few times around it gets the heart racing.
- STOMA DOLLS - These small calico dolls have a stoma and a bag on their stomach which can be a great comfort to stoma kids to take to hospital with them or to use the dolls to explain to other people about what has happened to them. My son will use it as a third person when in hospital to explain to staff what his doll doesn't like to happen - totally removing himself from the situation. They are around US$12 (in 2008) and can be ordered on line at www.shadowbuddies.org. If your child is a patient at Royal Children's Hospital Melbourne there is now a program in place to provide all children with a doll - if you haven't got one speak to the stomal therapy department.
- TOMMEE TIPPEE NAPPY BIN - If you are unable to run your bags outside to the bin when you change them, or choose not to every time, the Tommee Tippee Nappy Bin available at Target and Kmart is great for disposing of the bags and then every few days or weekly put them in the outside bin. It has a plastic liner dispenser inside and the bags get twisted up like sausages - no smell!! Some kids' bags are smellier than others but it works well for us. Especially in summer we live in a very hot climate and if the bags are in the outside bin in the hot sun it can be pretty smelly but if we put them out the day the bin goes we don't notice it.
Your Tips? Should you have some wonderful tips that you wish someone had told you sooner rather than later please write them down and, when time permits, submit it to Young Ostomates United so the next parent can do it a bit easier.
Apologies to those who live in other states ... I live in NSW and our hospital is in Victoria. Check with local services regarding schemes in your area.
The above was presented at the "Who Cares For The Carers?" YOU Inc Meeting held in conjunction with the ACSA Annual Conference (October 2010)