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Mal

Dear All,

 

We read the below article with great interest as Anorexia is a psychiatric disorder and we are having the same experience with the inadequacy of mental health treatment for adolescents in the state of Victoria, Australia

 

‘A different kind of hell’: The agonising story of a Perth mum who couldn’t save her daughter  

 

Our D has spiralled down very deep into ED and countless “resucitation” admissions to a paediatric ward (=re-nourishing via forced NGT) have taken additional toll on her mental health. Hopelessness, self hate, self harm and the whole palette of despair is her daily lot. Impossible to write down how far this goes (Let’s try to protect our D’s privacy, your hopes and sanity), enough said that we were very close to losing her several times.

 

While most individuals in the health system cannot be faulted (with some being very professional and compassionate), the system itself very poorly accommodates the needs of ED adolescents. There is not only the well known (and in this forum documented) terrible gap between physical and mental health treatment for ED patients, there is also a complete lack of options when it comes to treating the too common destructive behaviours, including suicide risks.

 

If a child refuses to eat, they will be forced fed. If they resist, they will be put under a Treatment Order to support the medical staff (I feel for them) in their gruesome task. They cannot be forced to accept help, counselling, psychotherapy or medication to reduce their suffering. They just need to say no. And they get worse and worse while the health system tell you there is nothing they can do. 

 

Like the family of Kate, the young person the article above is about, we think systemic issues are failing Australian youth. We think this is pervasive throughout Australia and the scope of a Chief Psychiatrist inquiry should happen at the federal level or at least in each State/Territory.

Please let’s not wait until the avoidable death of another young person ‘forces their hand’ like in this example in WA.

 

Parent of daughter diagnosed with AN 10 months ago. Super-resistor.
Melbourne, Australia.
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Barberton
@Mal

Thanks for posting this link. As someone living in Western Australia, I knew nothing about this story but I'm sure it is not unique Australia. However, it does mean that the spotlight is being shone on the issue of gaps in mental health services for children in our country. As Kate's mum so clearly stated, If there were a gap in a bridge would we continue to drive cars over it while we set up a review team to see if that is a problem?
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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PleaseEAT

How absolutely heartbreaking 💔
it saddens me that AFL (football) players disobeying quarantine rules make the news
but I also did not notice this on any of the news stations (and we watch a lot of the news) 


mental health definately needs to be put on the priority list in this country 
I do believe they are trying BUT obviously there are still gaps 
my d said after her last physciatrists appointment she wanted to walk out in-front of a bus 😳as she was so upset (and she has since has sacked this professional)

this is what families have to deal with when on to of an ED your kid has co morbid and  As my d a YA I’m not included in anything except to pick up the pieces 🙁
I had to deal with self harm, suicidal talk, depression the list goes on, where on earth is the support for YA parents/families??

I’m just so grateful her friend was meeting her after the appointment 


my thoughts and heartfelt sympathy goes out to the Savage family/loved ones and friends
❤️

 

 

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Mal
Dear Barberton and PleaseEAT,
thank you for your answers. I feel for any parent who looses the ability to feed their beloved child and has to witness their disintegration over months or years. 

The reasons I'm interested in the co-morbidities of ED is because ED may also be a co-morbidity of other mental illnesses or conditions. As is anosognosia, self harm, suicidal behaviour, ect.
Because ED is in the DSM-5 list doesn't mean that it is always a stand alone illness. And as ED happens to require medical treatment, the mental illness side is typically put on the side line:
- for practical reasons or systemic reasons: Medical wards and Psych wards have different approaches, rules etc and simply do not work well together even 1 floor apart.
- the accepted idea that one cannot benefit of mental health treatment until renourished, which may simply be impossible.

I often wondered how families end up with a child weighing 35kg, now I get it. The stigma on families is huge when it happens, which is very very unfair.
In case of total food and treatment refusal there is simply nothing professionals are prepared to do beyond resuscitation (eg. 7 days starving at home, 7 days NGT at hospital, and back again) and "safety plans". If a young person feels compelled to make herself suffer (self harm, eating/drinking restriction, NGT 5 times a day) or take the final steps (poisoning, hanging to name the most common forms of suicide acts), we parents are left to deal with it and live with the consequences. Professionals often don't look (protecting their sanity? Understandable, it's a job and they have their own problems and kids to raise): Not at the deep scars, not at the horrible distress the child experiences. 

On one hand, parents are considered the most important actors of the ED disorder therapy (FBT, "take control of the feeding") on the other hand, if this is not working, help & support disappear, the silence is deafening
- no space in mental health facilities for kids who don't eat (If those exist at all for the age range, see Western Australia in the article above)
- no place in specialised programs if they don't want to participate (FBT, ED-orientated day or inpatient programs)
- no forced medication or any strategy available to get patients to comply to treatment
- not a therapist specialised in teaching them how to eat again...
- no guarantee to keep them safe ("If they really want to kill themselves, they will do it no matter what we do" I've heard from a reputable Psych, a punch in the guts).

I'm fed up to hear of or see kids take their life. Many are not yet diagnosed with a mental illness, many don't reach out for help or think they are not worth being helped. Many may skip breakfast or develop addictions. There is a taboo around mental illness and around suicide (The lack of response/reaction to Kate Savage's death speaks volume).
I'm sick of the fatalistic attitude of professionals and society in general. I think we're failing our children.
And ED, like suicide, is CONTAGIOUS! ðŸ˜¡
Parent of daughter diagnosed with AN 10 months ago. Super-resistor.
Melbourne, Australia.
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Barberton
@Mal, I can hear your pain. You are spot on with all that you have written. It is so important to talk about what you think is wrong because in doing so one can find clarity in what is truly wrong and shine a light on ways to do things better.

This week I heard someone say (and it may have been Karmala Harris) that her mother would listen to her complain and then ask, "What are you going to do about it?" I have been thinking about this with regards to my own experience and the many frustrations that I have felt with "the system". Instead of becoming overwhelmed (which is so easy to do when the health of you child is at stake), I have been asking myself "What can you do?" So far it has been little things, such as saying no or asking for clarification on something until I truly understand. I may not change 'the system', but I can hopefully change my reality.

Is there something you can do today to make a difference? What would it be?
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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sandytoes

Dear Mal,

This quote below from you is exactly how I’m feeling right now, on the other side of the world.

”On one hand, parents are considered the most important actors of the ED disorder therapy (FBT, "take control of the feeding") on the other hand, if this is not working, help & support disappear, the silence is deafening
- no space in mental health facilities for kids who don't eat (If those exist at all for the age range, see Western Australia in the article above)
- no place in specialised programs if they don't want to participate (FBT, ED-orientated day or inpatient programs)
- no forced medication or any strategy available to get patients to comply to treatment
- not a therapist specialised in teaching them how to eat again...
- no guarantee to keep them safe ("If they really want to kill themselves, they will do it no matter what we do" I've heard from a reputable Psych, a punch in the guts).”


Co-morbidities complicate treatment. End. Of. Story. 

Denying treatment for non-compliance (when anosognosia is almost a criteria for diagnosis) is beyond baffling. I’m not sure how it’s not negligence. 

 

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Mal

@sandytoes,

 

Yes, co-morbidities actually prevent treatment, and sometimes are pushed as the justification for not do anything:

 

- ED as the illness:

Prevents mental health treatment (“Food is the medicine”, brain functions not restored enough to benefit from mental health treatment, systemic inability of the health system treat both de-nutrition and extreme distress)

 

- ED as a comorbidity of a mental illness:

ED prevents that underlying conditions are addressed or even investigated (neurological atypicality, autism spectrum, personality disorder, etc). “No point” I’ve heard many times as ED is obscuring everything else, “not possible” to have an ED patient in a regular psych ward.

For the patient, having ED (among a Covid-19 pandemic) means not being listened to. Being forced fed if necessary (think mashed spiders down the tube for an arachnophobia suffering person). What a cruel illness where the only real cure is what patient fear most. And if we fail to support them (‘take control of the feeding”) we simply force them. This is unique I believe.

 

You can’t support someone who wants to suffer (self harm by deficient health system), we refuse to go against their will and force suffering reduction measures on them (Would be too coercive!!!). If we do anything, then as a very measured reaction, not prevention, because we’re rightly wary of abuse (think mid-century psychiatry…). Yet I believe we fall into the opposite extreme: No action, active neglect.

 

Not least, we juggle with contradictory principles/approach of care and end up with a very confusing treatment execution. This doesn’t help our children, who may lose trust in us as we offer no containment to their despair and add to their own adolescence-natural and/or ED related confusion. Therefore, I agree with the term negligence. Breach of the duty of care, denied assistance are other words. It's not because we're bad people. It is because the task is extraordinary complex. But you will understand that I can't let my daughter's life land into the too hard basket.

 

So, what are we going to do about it as @Barberton very appropriately pointed out?

 

I don’t want the name of my dear daughter associated with a necessary change or initiative after her death. Rather with a successful treatment or suicide prevention program to the benefit of all. She’s going through hell* and I try not to get overwhelmed and I try to act before it’s too late. I don’t get deterred by the lack of traction in the treatment and I try to stay strong.

 

Here are just a few examples of what other parents have had the courage and generosity to do for our children despite their own devastating loss:

 

- Ryan:

The Ryan’s rule is a process for the parents – who know their children better than anyone – to address their concerns about the treatment received by their loved ones, before it’s too late.

https://clinicalexcellence.qld.gov.au/priority-areas/safety-and-quality/ryans-rule

 

- Kate:

As mentioned in my first post, the enquiry into the suicide (10th attempt in 2 months…) of a 13 yo young person for which allegedly no adequate support was available. Kate’s mother has spoken to the press (see link in the first post)

https://www.mediastatements.wa.gov.au/Pages/McGowan/2020/08/Review-into-mental-health-services-for-children-and-adolescents.aspx

 

- Harrison:

Following the passing of their young son, the Riedel family developed an App to connect persons at risk with their supports. @PleaseEAT and all of us on this forum, I very much recommend you to consider the App for your child.

https://www.harrisonriedelfoundation.com/who-we-are/the-yourcrew-app

 

So I’m prepared to do everything I can to help prevent another death, another damaged young person. We can all help by sharing our stories of “negligence” and what we found helpful to do to support the imperfect health system in attending to your child’s situation.

This is not about finger pointing and blame. This is about finding patterns, coming up with practical advice to parents in dealing with care systems, addressing required systemic changes with decision makers.

 

Nothing new? Many associations, foundations, and professional organisations doing it? Yes there is a lot of excellent resources for parents out there. And many incredibly dedicated professionals and volunteers. Yet if your child’s case doesn’t fit the available care or steps into unclear psychiatric territory, you’re alone and your child (minor or adult) is very very vulnerable.

 

I’m very keen to learn from your experience of parents of “tough”, “extreme”, “atypical” cases and hopefully save my daughter and help other families navigate it right from the beginning and have a chance to achieve the best outcome. Topics like communication, information, multidisciplinary care, self-harm and suicide prevention. What are the signs of deterioration (in the condition of your children or in the care they received by you and your supporting professionals), what did you miss or wished you knew, how did you obtain improvement in care, etc

 

Please contact me privately if you prefer not to post material that you think may be distressing for other parents (I’ve learned to hold it with new families, but I wish I’d known that the classic approach so spectacularly may fail as I was a new AN parent myself)

 

Thank you for your support

 

PS: *this word is forbidden on the forum, my apologies for using it.

Parent of daughter diagnosed with AN 10 months ago. Super-resistor.
Melbourne, Australia.
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PleaseEAT

Mal what a fabulous app!
thank you for sharing
i hope others find it useful, I think this would of been great to have when my d was very ill (she is doing better now) I’ll try to talk to her about wether she thinks the app would be helpful for her now 
my d is now a YA 21.5 so unfortunately it’s really hard to have any say in anything with
her but I’m sure if we knew of the app in the beginning she would of agreed plus I would of just got it not asked her if you know what I mean
she was more compliant back then very I’m an adult what would you know attitude now and the “professionals” don’t “have” to include us

one of the things I did when my d quite depressed, suicidal and SH was I did a suicide first aid course which was very helpful
taught you ways to engage and find a “life line” to the sufferer

i also msg my d al the time checking on her
try to be loving and understanding all the time (very hard some days)
We have been here for her for support her entire journey but it has taken a toll let me tell you and unfortunately I have no energy to advocate  I am now fighting a serious medical dx myself 
good luck with your d and know your love for her is stronger than any professional (place for them too) but our kids knowing we will never give up on them is I think what helps a lot

all the best 
❤️☮️

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