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 FNDLINKS AND INFORMATION TO CHECK OUT:recap on jjsegment episode with the neurologist appointmenthttps://thefndpodcast.simplecast.com/episodes/the-jjsegment-advocate-yourselfmake the most of your appointments here’s some ideashttps://www.patients-association.org.uk/make-the-most-of-your-gp-appointmentInformation on NEAD: Pdf on how to manage your Nead https://www.sth.nhs.uk/clientfiles/File/Epilepsy/pil2072.pdfRyan’s Rule: based in qld onlyRyan’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-ruleREACH : based in NSW onlyREACH 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/reachHow 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.aspxHuman Rights Commission : How to make a complainthttps://humanrights.gov.au/complaintsCommonwealth Ombudsman making a complaint: what they dohttps://www.ombudsman.gov.au/How-we-can-helphere’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.pdfIf 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 AppmyFND, 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 appTo listen to our song playlist  started by our lovely Maggie on Spotify click on the link belowhttps://open.spotify.com/playlist/5lvGhN4Ab3AtwBj42L5DDA?si=IyN0V1ENQdi1_6W6MrNjAAFND Merchandise to support FND Australia Support services by Chucky from @friendswithfndhttps://imprintmerch.com.au/collections/lets-have-the-chatfrom 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:https://www.fndaus.org.au/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://fndaus.org.au/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.http://fnddimensions.org/A really helpful article and explanation of what FND is: 'https://threadreaderapp.com/thread/1367576277956370432.html?fbclid=IwAR1GZpXe7IgC9qVlIr7ygA9RslPy6nxhQIumdUw9XMu2fs8MsMf8SwYZeVQOther podcasts/ blogs / vlogs to follow:itsmeitsmeitsfndhttps://open.spotify.com/show/6RSjTADQCw9tA4Udnutf0L?si=JZy4CAfuSB6FWaBCi8Avgg&dl_branch=1Bed Life and Beyond by Rach also a lovely FNDer https://pandoralocksmith.wordpress.com/about/John McLeans Fnd Journeyhttps://m.facebook.com/JohnsFND/?ref=page_internal&mt_nav=0Lmtd Life with FNDhttps://m.youtube.com/channel/UC3xLKpn7gkgvVoH29ulu4IA/videosFNDer amplified: Meg Jacksfollow on Instagram @ Meg.jacks_TicTok: @megjacksThe Fnd Podcast always suggests that you always talk with your gp and or specialist with any treatments in regards with FND.