On this episode our ever wonderful Deb is being her wonderful supportive self. she helps Detty with Centrelink talks about what’s going on especially with her Durcums Disease and the importance of having the supports in place and speaking up not only for yourself but for others and having an advocate for you.
‘What is Dercums Disease?
https://rarediseases.org/rare-diseases/dercums-disease/
How to make a complaint : several avenues to go:
The Australian Practitioner Regulation Agency: How are complaints or concerns managed?
https://www.ahpra.gov.au/Notifications/How-to-submit-a-concern.aspx
Human Rights Commission : How to make a complaint
https://humanrights.gov.au/complaints
Commonwealth Ombudsman making a complaint: what they do
https://www.ombudsman.gov.au/How-we-can-help
here’s a great guide on how to advocate for yourself or others
http://www.sa.agedrights.asn.au/files/19_how_to_advocate_yourself_and_others.pdf
If you need someone to advocate for you and you are disabled there is the disability advocacy finder:
Disability advocacy is acting, speaking or writing to promote, protect and defend the human rights of people with disability. The Australian Government, and some state and territory governments, fund independent advocacy to help people with disability who face complex challenges or are unable to advocate for themselves, and do not have family, friends or peers who can support them as informal advocates, to access advocacy support.
To listen to our song playlist started by our lovely Maggie on Spotify click on the link below
https://open.spotify.com/playlist/5lvGhN4Ab3AtwBj42L5DDA?si=IyN0V1ENQdi1_6W6MrNjAA
FND Merchandise to support FND Australia Support services by Chucky from @friendswithfnd
https://imprintmerch.com.au/collections/lets-have-the-chat
from masks to bags hoodies and tshirts check them out!
HELPFUL RESOURCES:
A website all things Functional neurological Disorder written by Professor Jon Stone who is the leading FND researcher and Consultant Neurologist in Edinburgh, Scotland.
https://www.neurosymptoms.org/
Neurosymptoms has an app that you can download now too. Look up neurosymptoms or Jon stone and you will find it there.
FND ORGANISATIONS:
FND AUSTRALIA SUPPORT SERVICES INC: A wonderful resource for people in Australia with FND: from reasearch into FND, finding medical specialists and services and just information about FND. Solely dedicated to all things FND and helping those with FND in Australia.
https://www.fndaction.org.uk/
FND Dimensions aims to develop a network of ‘peer support groups’ across the UK either in face to face meetings or online via methods such as Skype. By bringing people together on a regular basis, this helps alleviate the isolation that many FND patients feel. It also gives opportunity for others to open up dialog and to talk to others in a similar position about the day to day challenges, issues or concerns with one another.
A really helpful article and explanation of what FND is:
MY FND APP is another great tool that can be downloaded at any App Store which can help you monitor your FND symptoms and document it so you can see it for yourself long term and keep a log. Also it can be great to take along for appointment.
Other podcasts/ blogs / vlogs to follow:
itsmeitsmeitsfnd
https://open.spotify.com/show/6RSjTADQCw9tA4Udnutf0L?si=JZy4CAfuSB6FWaBCi8Avgg&dl_branch=1
Bed Life and Beyond by Rach also a lovely FNDer
https://pandoralocksmith.wordpress.com/about/
John McLeans Fnd Journey
https://m.facebook.com/JohnsFND/?ref=page_internal&mt_nav=0
Lmtd Life with FND
https://m.youtube.com/channel/UC3xLKpn7gkgvVoH29ulu4IA/videos
The Fnd Podcast always suggests that you always talk with your gp and or specialist with any treatments in regards with FND.
Potrebbe piacerti
