F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

Foodsupport_AUS
I was privileged to be able to attend the first day of this meeting yesterday. The NEDC was commissioned by the Australian Government and continues to be funded by them. The purpose is to bring together evidence, experience and expertise to help build a consistent, safe and accessible system of care for people experiencing eating disorders and their families. Anyone can join the NEDC. I  have been a member for around 8 years. They have just celebrated their 10th year. 

Day one of the meeting was attended by approximately 200 people (best guess). They came from all areas of the eating disorder world - parents and caregivers, those with eating disorders, treatment providers from both the public and private sector, and those from government and research. Many fell into more than one category. It included people from each state, those in a position to change the system. 

The theme for Day one was on Building Systems of Care, while the them for Day 2 was Credentialling of treatment providers, and some workshops. 

There was a general acknowledgement from all present that there are many gaps and flaws in the current system for treatment in Australia. Particular themes were gaps issues with accessing care - particularly first contact with health providers, also stepping up and down between levels of care. 

Kevin Barrow from the Butterfly foundation said that the Butterfly help line currently receives 22000 calls per year, on average lasting 1/2 an hour. Common themes in the phone calls from carers were terrified, and from those with eating disorders - care providers were ignorant. 

The voice of lived experience was strong - with three people who had recovered telling their story - not of their illness but rather their navigation of the system. Themes again were difficulty in accessing care, negotiating care providers, financial constraints with all saying they were grateful they had parents and family who could help them through. 

A new guide for how to use Peer support in eating disorder care was launched. It is available on the NEDC site. https://www.nedc.com.au/professional-development/peer-work/

After lunch we heard how we are going around Australia in trying to have a co-ordinated system of care. Pitfalls and large gaps were acknowledged. We then broke into groups to come up with areas of need in improving the current system for eating disorder
care. The groups where Lived Experience, Mental Health, Dietetics, Primary Health and Public Health Networks, Research and Systems improvements. You could join whichever group you felt you were a part of. We then all came back after we hard decided our priorities for improvements. Remarkably many of our thoughts were similar across all groups. 

The system of care needs to reflect the urgency of the illness
Appropriate care in an appropriate time frame or as one other group put it - no front door no wrong door for care. That is an appropriate referral to care whenever it is needed and where ever it is needed. 
Training of GP's caregivers and any other point of contact for those with eating disorders
Decreasing stigma
Multidisciplinary teams 
Coordination of medical and mental health care
No gender bias, weight bias
Collaboration of Care through the states
Step up and step down care as needed, with smooth transitions between different ages
Research into new treatment options 
The voice of lived experience embedded into care
Credentialling who gives care
Carers as valued members of the team

The next thing of course is translation of this into action. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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LaraB
Fantastic to hear about the drive to improve care with so many different voices being listened to. It is brilliant to have experienced carers like yourself in a position to influence change. 
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Kookaburra
Thank you @Foodsupport_AUS for the run down of the day. Glad you could be there to offer your wisdom and also to report back to us
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MKR
Thank you @Foodsuppory_AUS!  Sounds like great news.

If things could move along the points you have summarised, especially when it comes to speed in the first stage of treatment, many lives will be saved. 

I particularly liked the highlighted points: 


The system of care needs to reflect the urgency of the illness
Appropriate care in an appropriate time frame or as one other group put it - no front door no wrong door for care. That is an appropriate referral to care whenever it is needed and where ever it is needed. 
Training of GP's caregivers and any other point of contact for those with eating disorders
Multidisciplinary teams 
Coordination of medical and mental health care
No gender bias, weight bias
Collaboration of Care through the states
Step up and step down care as needed, with smooth transitions between different ages
Research into new treatment options 
The voice of lived experience embedded into care
Credentialling who gives care
Carers as valued members of the team

The next thing of course is translation of this into action. 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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PleaseEAT
 Good to see this being discussed 👍
and hopefully action won’t take too long......??
where on earth do all our tax paying $$ go?
Maybe some things are best left unsaid but as this is also a place to vent:
it’s very frustrating slow for those of us who missed out/have been let down by the health system  on timely dx, support and services and because of that have been battling the beast for YEARS 🙁
how many lives/families need to suffer/be destroyed (we all know it effects the WHOLE family)
thank you to all the advocates for their work and efforts/input towards this keep up the great work 
heres hoping the future looks brighter for newly dx kids/YA of ED
and as we all know here timely intervention is so important!

rant over 
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Barberton
Thank you so much Foodsupport_AUS for attending this seminar and for giving us all your feedback. This is exactly the type of work that needs to continually happen to instigate change in the system. Very keen to read the Peer Support information.
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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