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:
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.
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)
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.
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.