Providing education and information on cystic fibrosis life.

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Welcome to our 
CF Adult and Family Newsletter...

Hospital. Whether it be attending outpatient clinics or an admission, hospitals are a reality for the cystic fibrosis journey. It can be a stressful and challenging experience for both the patient and the individual. So this newsletter is dedicated to the Hospital Hack, making the hospital experience just a little bit easier.

 

On route 

It all starts with leaving home and getting to the hospital in the first place right? This process can be "another day in the life of CF", but sometimes (and maybe more likely for our adults) it can be a little less planned or foreseen. So what can you do to lighten the load?

Do we have everything? 

  • Keep a list in your phone of everything you need for a Clinic or Hospital admission. If it's on your phone if you think of something new, you always have it with you to add and remove things. 
  • As your hospital admissions become more frequent having a pre-packed bag with everything you need for a few nights is a huge time saver, especially for those unplanned admissions.

Access Interstate Travel Assistance?

Travelling further than 100km to your treating hospital may make you eligible for financial assistance towards travel and accommodation costs. ACT residence can access IPTAS here or NSW residents can access IPTAAS here. Print the forms and take them with you to the hospital. If you forget ask the CNC for copies.

Where should I park?

If attending the Canberra Hospital you can park in the multi-story car park and utilise the drop off and courtesy bus to get to the hospital. Disability parking is also located under Emergency. If you park in the Canberra Hospital site and your parking time is running out, let the CNC or Ward Nurse know your registration, model and vehicle colour, so that the Parking Inspectors can be informed and you don't receive a fine.
**Make sure you do this before your time is to run out, as they can not do anything if the fine has already been issued.

For our interstate travels talk to the CNC or Social Worker at your hospital about accessing subsidised parking. Note: CFACT will reimburse parking and TV Rental expenses within your annual cap.
 

The Canberra Hospital Pediatric Outpatient Clinic are reviewing their forms and need YOUR feedback. Follow the links to see the form under review, then complete the consumer consultation questions and return it to Fiona Matthews, or send it to info@cfact.org.au to be returned anonymously.

CF Parent Information - seeking help when unwell
 

Lauren Rowe from Gifted Life has a bunch of great videos, including #18 Hospital Hacks.

Check it out here for some awesome packing tips.

What about these?

*Your own pillow and blanket
*Single Euro bed for carer
*Small bag to hang on your drip pole when moving around.
*Nebulisers and a few days of medications.
*Winter = Uggies
*Teddy
*Fun activities - colouring in, play doh, board games, cards and books.


Make sure any electrical devices have a tag on them so you can use them.

Bring a notebook or something to take notes from your medical team.

Canberra Hospital now have WIFI. But additional dongle devices can assist for streaming.

 

When your an inpatient.

I guess we spend most of our time trying to stay out of hospital, that can even be the case when you are admitted. Did you know about Hospital in the Home (HITH)?

HITH is an inpatient service of the Canberra Hospital. It provides access to health care for patients in their home 24/7. Being at home in a familiar environment can provide a better environment for healing and recovery from illness. It can be less disruptive than remaining in hospital. Patients often comment how much happier they are receiving their treatment at home. 

It should be noted that currently HITH provides access to community nursing but not Allied Health Services. In this case you should discuss with your team your individual needs and what is the best care for you.

Some Members who travel interstate establish transfers to the Canberra Hospital for their admissions. As being away from home may not be practical for everyone. You can discuss this with your CF Team during an admission, or at clinic to plan ahead when the time comes.
 

Coming Home

YAY! But let's not get over excited. There are a few things to do before you run out the front door.

* make sure you know and understand the treatment plan for home and how long to keep it up for before returning to regular treatment
* book your post admission clinic check up before being discharged
*ensure any home care or rehabilitation is in place before you leave
* allow yourself/family about 1 week after admission to relax and recover before settling back into a normal routine.
 
 

General Business

Consumer Connect
On Wednesday 31st August from 4pm CF Australia will be holding a Consumer Connect focus group at LJ Hooker Dickson. To find out more about this program or register to attend contact Heidi

What is Consumer Connect?
CF Australia currently manages the Australian Cystic Fibrosis Data Registry and the Clinical Peer Review across Australia. Over the past decades the knowledge gained through these two assets has been massive. Now it's time to complete the circle of evaluation and add the voice of the consumer to this research.

Consumer Connect, a consumer representative digital portal, will forge a critical link in the communications and awareness chain, allowing the CF community's core individuals have a more engaged relationship with their medical and allied health care groups and hospital teams.

Keep up to date with the latest Advocacy activities led by Cystic Fibrosis Australia here. 

 

We have 2 seats left at our table this Saturday for the Queanbeyan Lions Club Gala Dinner Dance. If you would like to join us contact Heidi on 0437 485 454 or info@cfact.org.au 

 

Next Sunday July 31 101 Santa's will shuffle
in speedos for
cystic fibrosis.
Please like, share, encourage and support our Santa Teams.
WEBSITE HERE

 

Please feel free to forward where appropriate to your extended family and friends. 

If you would like more information on any of the above, please contact Heidi Prowse or discuss with your CF Clinic Team.

Our next topic is: CF Bugs

e. heidi@cfact.org.au || m. 0437 485 454

Disclaimer: The information contained herein is provided in good faith. However accuracy of any statements is not guaranteed by Cystic Fibrosis ACT. We provide the information on the understanding that persons take responsibility for assessing relevance and accuracy. Individuals are encouraged to discuss their health needs with a health practitioner.

 
Cystic Fibrosis ACT
PO Box 909
Civic Square ACT 2608
e. info@cfact.org.au || m. 0437 485 454
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