"Lack of services and denied intake"

Our child, who is in their late teens, was diagnosed with ARFID several months ago at the Swan Centre on their initial appointment and was put on a waitlist for intake.  We accessed our General Practitioner services weekly to support us with our child, who at the time had a BMI of <16 and currently just sitting at BMI 17. 

We were referred to headspace as we were unable to find any Clinical Psychologist in the southwest.  With ARFID not being part of the Medicare recognized eating disorders, we aren't able to access help with paying for the dietitians so have again gone private.  We have pulled every bit of money we can to help our child, paying for clinical hypnosis via zoom and a specialized dietitian by zoom.

Fast forward to more recently, Tier 2 services aren't working and our child is displaying signs of AN, self-harm and has lost more weight and slowly fading away in front of our eyes.

We have been trying to do FBT treatment with our child as it has been shown to be the best in recovery for ARFID and AN, although headspace doesn't incorporate parents into their sessions and, as I understand it, aren't addressing the issues around food with the ED which isn't providing a multidisciplinary patient focused approach.

Desperate for help, we get a CAMHS Referral because they have a clinical psychologist and we need our child seen as their condition has deteriorated and things appear to have escalated.  The Clinical Nurse Specialist Simon was amazing in his kindness and support towards our child and our family and agreed they required a higher level of services.

Sadly the team at CAMHS reviewed our case and because we have paid for outlying services, clinical hypnosis and dietitians, regardless that we don't have a Clinical Psychologist, they wouldn't accept my child even though I believe they meet the NADOC guidelines and criteria.

So completely again let down by services, I spent all day recently begging for help from Private Clinical Psychologists in fear that my child won't live past their next birthday if they continue to deteriorate, talking to PCH and Hollywood.

After my tenth knockback for the day, a Clinical Psychologist whose books were closed listened to me cry and tell our story and offered to see my child very soon. So now I will be spending in total 6 hours on the road to travel to North of the River Perth for a service we desperately need and this will be possibly weekly.

I understand our General Practitioner is also shocked that we are having to be bounced all over the place to get services, nor the financial strain this is putting on our family and the impact on my profession, which is actually in health causing me to decrease my hours and take time off work.  Our GP has also referred us now to Hollywood Private Eating Disorder Clinic and PCH. 

Feeling extremely let down by the health service in the southwest.