The Deb & Detty Show

On the Deb & Detty Show today Deb is going to let us know that you can have more than just FND. She reflects back on being told on being told she was a hypochondriac. She says you aren’t ,don’t be afraid to speak up for yourself.

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

Universal Medical ID bracelets

Medical IDs are a simple & practical way to communicate information to first responders in a medical emergency. They eliminate trips to the hospital, reduce unnecessary hospital admissions and prevent minor emergencies from becoming major ones.Other accessories are available.

https://australia.universalmedicalid.com/

Rod is Debs son who also features in the Caregivers Hangout. Here is the episode staying safe Carer gateway link : Emergency Care Plan

https://thefndpodcast.simplecast.com/episodes/the-caregiver-hangout

medical alert ; safeTwear

safeTwear medical alert pendant brings together many world firsts. Weighing only 34 grams and smaller than a matchbox, you’ll soon forget you are wearing the most advanced award winning Fall/GPS/SOS system and that’s exactly how it was designed.

Simplicity and accuracy were tantamount to the design of the safeTwear pendant due to its use by the elderly and frail, or people who are mobility challenged. A one button push alerts a 24/7 care team who are trained to respond to emergency and non-emergency situations.

1300699159

https://www.emsas.com.au/safetwear-alert-pendant/

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.

www.neurosymptoms.org

Youtube video: What is Functional Neurological Condition By Dr. Phil Parker. A great thorough explanation of FND and the updates of FND.

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://fndaus.org.au/

FND Action: FND Action is a patient-led charity who offer a caring and supporting hand to people living with Functional Neurological Disorder (FND) in the UK. FND Action provide support to those diagnosed and their caregivers by hosting online support groups, an informative website and actively advocating for the cause.

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=IwAR1GZpXe7IgC9qVlIr7ygA9RslPy6nxhQIumdUw9XMu2fs8MsMf8SwYZeVQ

if you are interested in FND Merchandise to support FND Australia support services by Friends of FND

https://imprintmerch.com.au/collections/lets-have-the-chat