Join us on this episode as we talk about experiences with the medical profession. That we have to be prepared for our doctors appointments have the support and make the most of them. Be an advocate for yourself and make the most of the time you’re there. We also touch base other subjects all fnd . Follow Jess on Instagram @functionallyjess for educational information / slides / posts about FND https://thefndpodcast.simplecast.com/episodes/the-jjsegment-advocate-yourself-make-the-most-of-your-appointment
Join us on this episode as we talk about experiences with the medical profession. That we have to be prepared for our doctors appointments have the support and make the most of them. Be an advocate for yourself and make the most of the time you’re there. We also touch base other subjects all fnd .
Follow Jess on Instagram @functionallyjess for educational information / slides / posts about FND
LINKS AND INFORMATION TO CHECK OUT:
recap on jjsegment episode with the neurologist appointment
https://thefndpodcast.simplecast.com/episodes/the-jjsegment-advocate-yourself
make the most of your appointments here’s some ideas
https://www.patients-association.org.uk/make-the-most-of-your-gp-appointment
Information on NEAD: Pdf on how to manage your Nead
https://www.sth.nhs.uk/clientfiles/File/Epilepsy/pil2072.pdf
Ryan’s Rule: based in qld only
Ryan’s Rule assists you to get help when you are concerned about a patient in hospital who is getting worse or not improving. All CQ Health hospitals and services fully support this initiative.
https://www.health.qld.gov.au/cq/patients-and-visitors/your-rights-and-responsibilities/ryans-rule
REACH : based in NSW only
REACH is a system that helps patients, their family and carer/s escalate their concerns with staff about worrying changes in a patient's condition. It stands for Recognise, Engage, Act, Call, Help is on its way. REACH was developed by the Clinical Excellence Commission in collaboration with local health districts and consumers. It builds on the surf life‐saving analogy for recognition and appropriate care of deteriorating patients by encouraging patients, their families and carer/s to 'put their hands in the air' to signal they need help. This is consistent with the emergency response systems already in use in NSW Health services.
https://www.cec.health.nsw.gov.au/keep-patients-safe/deteriorating-patient-program/reach
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.
https://disabilityadvocacyfinder.dss.gov.au/disability/ndap/
The myFND App
myFND, has been launched to support people with Functional Neurological Disorder (FND) to understand and manage their symptoms. Supported by St George's Hospital Charity and St George's NHS FT, the app has been launched by Consultant Neuropsychiatrist, Dr Chris Symeon. You can find it at any App Store.
https://myfnd.co.uk/
for more information about the fnd app
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: '
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
FNDer amplified: Meg Jacks
follow on Instagram @ Meg.jacks_
TicTok: @megjacks
The Fnd Podcast always suggests that you always talk with your gp and or specialist with any treatments in regards with FND.