Join us this episode as Jess takes us through an unpleasant experience that is FNDers may all experience one form or another on our own journey. Where we are faced to ultimately choose to advocate for ourselves, choose what’s right for us? Do we stay or do we find someone else to go with? For more details on this episode please follow this link https://thefndpodcast.simplecast.com/episodes/the-jjsegment-advocate-yourself
Join us this episode as Jess takes us through an unpleasant experience that is FNDers may all experience one form or another on our own journey. Where we are faced to ultimately choose to advocate for ourselves, choose what’s right for us? Do we stay or do we find someone else to go with?
follow Jess on Instagram @functionallyjess
Information to check out from this episode
for giggles bluey
https://tenor.com/view/bluey-bandit-bingo-bush-wee-takeaway-gif-17201974
Do you need to know where the toilets are before you go? Part of the national continence program and the Australian government health department have put up a map where it lists all the public toilets for you.
https://toiletmap.gov.au/
Continence Australia : as Continence can be affected by FND if you need more support help and advice here is the place to go to. Also it is world continence awareness week 21-27 June 2021
https://www.continence.org.au/
Ryan’s Rule in Queensland
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.
Background of Ryans Rule
Ryan Saunders was nearly three years old when he tragically died in hospital. His death was found to be in all likelihood preventable. Staff did not know Ryan as well as his mum and dad knew him. When Ryan’s parents were worried he was getting worse they didn’t feel their concerns were acted on in time. Ryan’s Rule has been developed to provide patients of any age, families and carers with another way to get help.
https://www.health.qld.gov.au/cq/patients-and-visitors/your-rights-and-responsibilities/ryans-rule
Reach in NSW
Patient Family Carer Escalation
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.
https://www.cec.health.nsw.gov.au/keep-patients-safe/deteriorating-patient-program/reach
To listen to our song playlist started by our lovely Maggie from Maggies corner Spotify click on the link below
https://open.spotify.com/playlist/5lvGhN4Ab3AtwBj42L5DDA?si=IyN0V1ENQdi1_6W6MrNjAA
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/
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: '
https://threadreaderapp.com/thread/1367576277956370432.html?fbclid=IwAR1GZpXe7IgC9qVlIr7ygA9RslPy6nxhQIumdUw9XMu2fs8MsMf8SwYZeVQ
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