Providing education and information on cystic fibrosis life.
No Images? Click here
Welcome to our
CF Adult and Family Newsletter...
Living with cystic fibrosis is a life long journey for both an individual and their family. It can be challenging to maintain the fight all day every day and some days you can just be sick of being sick!
This newsletter is about recognising the support that is available for individuals and their carers in the ACT and surrounding region. But also acknowledge the importance of emotional well-being within your own treatment plan.
At clinic, physicians, nurses, physiotherapists and dietitians ask about your physical health – “How you are breathing, sleeping, eating, and completing your treatments?” An equally important inquiry is “How are you feeling?”
Research has shown that patients with chronic diseases (defined as a condition that persists for longer than three months) can often have anxiety and depression. It is estimated that up to one third of individuals with a serious medical condition will experience depression. Depression is one of the most common complications of chronic illness like cystic fibrosis.
As an individual with CF or a carer, you need to be aware of this and ensure that you identify and communicate these feelings so that you can receive support.
Where to start? It's ok to say, I'm not ok.When the load is starting to get heavy both as individuals with CF and carers we push it aside and get on with the daily battle of CF. In fact, human beings generally do this. But what happens? It gets heavier and heavier until you can not cope. What is available is regular opportunities to "check in" with yourself and pathways to access professional support before it becomes to much. Step 1: As individuals with CF and carers regularly check in with how you are feeling. Recognise the journey is hard for both/all of you. Your friends and family can be a huge help with this to. Step 2: Contact CFACT to access peer support. Another adult or Mum or Dad is going through this too and it can be nice to know that you're not alone. Step 3: As we said earlier, it is just as important to tell the physician about your lungs and the dietitian about your weight as it is TO TELL THE SOCIAL WORKER HOW YOU ARE FEELING! CONTACT: Social Work Department Canberra Hospital 02 6244 2316, or ask anyone in your treating team to organise a referral to the Social Worker for you. |
If you receive a high result we recommend you go straight to Step 3. 
|
Let's talk about the social worker!!
The Social Work service is provided to people with CF and their families/partners through the outpatient clinic.
At the Canberra Hospital individuals are seen for review at Clinic, as inpatients in hospital, and may also contact the Social Worker outside of clinic times to make an appointment, or for phone contact. If you don't regularly see you social worker at clinic, request a referral from your CNC.
Social Workers can assist individuals and families respond effectively to personal and practical concerns through providing information, problem solving, advocacy and counselling.
The following areas are examples of common concerns individuals may wish to discuss with a Social Worker:
- Personal or family stressors
- Adjustment to changes in your health and condition
- Anxiety / depression / mood concerns
- Carer support
- Information on support services
- Financial Entitlements and income support
- Housing concerns / transport issues
- Planning for the future
In addition to this, the Pediatric Social Worker can also assist with:
- Supporting children become active in their CF care and treatment (activities/responsibilities related to their age), with an aim towards increasing independence when transitioning to the adult service,
- supporting children and their parents when they are having difficulties adhering to their treatment,
- referral to community resources if support required re: development or behaviour changes; and,
- supporting children to maintain engagement in education.
But if you have questions/queries, ask your Social Worker, as if their not the right support for that issue, then they can assist with connecting you to who is.
Mental Health ServicesThere is help out there. Here is a list of organisations and websites that can provide support and assistance to you or your family.... and some CF humor! 24hrs Services |
|
|
|
University of Canberra Psychology Clinic eHeadspace Headspace (Bruce, ACT) Child and Adolescent Mental Health Services (CAMHS) 02 6205 1469 CatholicCare Private psychologist |
USEFUL WEBSITES
Information about depression, how to manage it and references to scientific articles. http://www.depressionet.com.au Information about depression. http://www.bluepages.anu.edu.au/
A guide for families and carers of people with severe and persistent mental illness. http://carersguideact.org.au/
A great site for self paced learning of ‘cognitive behaviour therapy’.http://moodgym.anu.edu.au/
Exercise and Emotion
Exercise makes you feel good because it releases chemicals like endorphins and serotonin that improve your mood. It can also get you out in the world, help to reduce any feelings of loneliness and isolation and put you in touch with other people.
If you exercise regularly , it can reduce our stress and symptoms of mental health conditions like depression andanxiety, and help with recovery from mental health issues.
Remember, Cystic Fibrosis ACT supports your recreational activities including sports fees, gym memberships, personal trainers and apparel. For more information contact Heidi or submit a request for support online here.
General Business
Okambi Advocacy
Keep up to date with the latest Advocacy activities led by Cystic Fibrosis Australia here. We need you to contact your local member and ask them a few questions. More details in the last
communique.
6500 Santa Speedo Shuffle
Our biggest fundraiser for the year is off to a flying start. With your help it will be a huge success! There are 3 main things we need to do right now. If you can get involved in any of the following ways we would be delighted:
1. Spread the word: Please share our posts on social media and tell everyone you know. Word of mouth is the best way to get the Canberra Community involved!!
2. Sign up: Get a team together. You can be a Santa Shuffle (register by June 30) or do the Christmas in July fun run.
3. Business Support: We are looking for businesses to donate vouchers or sponsor Santa teams (for $500). If you know any businesses that may be interested you can pass on this request for support letter or let Head Santa know.
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: Hospital Hacks
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.
 |  |  |
PO Box 909
Civic Square ACT 2608
e. info@cfact.org.au || m. 0437 485 454