Friday, 22 February 2013

I am LIVID, LIVID, LIVID. And I know I am not the only one.

Today I read an article in the Daily Telegraph about yet another 18+ teenager with an eating disorder that has been failed by our current system of allowing 18+ young people with serious eating disorders to make their own decisions about whether or not they have eating disorder treatment. Worse, this young woman was discharged because "at 18 she was deemed to be old enough to care for herself". Having reach that magic age of 18, she discharged herself. Within months she was dead.


Other less seriously sick young people are being discharged from eating disorder treatment when they read the magic age of 18 because their recovery level is considered to be "good enough". If you remember, we were told by our pscyh that she was happy to settle for "good enough" if my son was happy.

Some, I suspect, have built up good relationships with an effective treatment team only to be cut loose to drift in the big scary wide ocean of Adult Services when they reach the magic age.

Or, like a young woman I heard about the other day, they are waiting for their 18th birthday with great anticipation because they plan to halt the treatment their loving and terrified parents have fought so hard to get for them.

During the UK parliamentary discussion last Thursday this subject was brought up. I know there is at least one MP who is convinced that young people suffering from severe eating disorders should not be permitted to make their own decisions once they reach 18. Purely and simply because the eating disordered mind makes them unable to do this. We are talking about a serious mental illness after all. And not only this but the most deadly of all mental illnesses.

As has been proven by the above article in the Telegraph.

I know there are lots of parents of young people out there... young people who are about to reach 18, or who have already reached 18, or who are in their twenties or older... who would give their back teeth to have some clout when it comes to whether or not their child needs - and gets- treatment for their eating disorder.

There must be something we can do together. The Act says that Once an individual has reached the age of 18, no one can give consent on their behalf. If they are not competent, clinicians can provide treatment and care, providing this is in their best interests. 

All too often this needs to go through the courts which, when someone is seriously ill, can be too late.

But whey the hell should such a dramatic and radical change to a mentally ill child's rights take place the moment the clock strikes midnight on their 18th birthday?

8 comments:

  1. This is such an unnecessary tragedy and must receive top priority attention in Parliament - nothing short of yesterday is good enough! An immediate amendment to the Children's Act must be discussed urgently. My daughter was discharged and deemed fully recovered at age 16, only 14 months after AN diagnoses. She is struggling, ED thoughts taking over, as her mother I am left dis-empowered to get her back into treatment as at age 16, she has been told it is her decision and she can't be forced - that, coming from her former Consultant Psychiatrist, GP surgery and father. More and more young people are falling prey to a disjointed and neglected health care system - a failing of properly educated health care professionals and others not being aware of the dangers of this biologically based brain disorder which wreaks havoc on the sufferer and their families. How many more unnecessary deaths will be required for change to occur?

    Yes, Livid, Livid, Livid - worse even, Horrified, Horrified, Horrified!

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  2. I'm glad you are drawing attention to this Bev and somewhat encouraged that at least one Member of Parliment (MP) who is convinced that young people suffering from severe eating disorders should not be permitted to make their own decisions once they reach 18.

    I encourage all parents to contact your MP's and speak up about this. It must change. When the brain is malnourished it does not work correctly - rational decisions cannot be made. These ill people deserve help.

    My deepest condolences to the family of this young person.

    Becky Henry
    Hope Network, LLC

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  3. I'm not so much livid as gibbering. We cam SO close to this, and we had GOOD early care (with adequate GP identification and early enough referral). I wasn't able to fight the system enough to get my daughter into treatment again at 18 until it was nearly too late. I feel a great deal of guilt about that, but an incredible amount of anger too in that I shouldn't have HAD to fight the system, it should have been helping ME fight the AN.

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    1. The System is failing our children which is why we need to FIGHT!!! But fighting something as complex as this issue seems more daunting, the more you read about it. Aaarrrggghhh!

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  4. It's not just eating disorders - any patient of 18 with any serious mental illness is treated as an adult. In fact from 17 we've been in adult services. It means, in particular, that you might not have any way of finding out what care they *are* receiving if they don't want to tell you. It is agonising and ridiculous after years of care.

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    1. Absolutely. It makes my blood boil - and I know other parents whose blood is boiling away, too...

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  5. "Once an individual has reached the age of 18, no one can give consent on their behalf. If they are not competent, clinicians can provide treatment and care, providing this is in their best interests."

    This may be controversial but in some ways I agree with this. I don't think you can rely on parents for care. The ultimate responsibility is with the clinicians. What if the patient doesn't have parents who are involved with their care? Or they don't want to be involved at that time (the parents)? How long could parents stay involved? What if all along the parents have had no say or not been interested to be involved with treatment - aren't we failing those patients?

    It is more the system is failing patients of ALL AGES with eating disorders by allowing them to make their own decisions when they are severely ill.

    I think the big issue is that clinicians do not assess competency adequately. The issue with that poor girl isn't really that she was 18 - say she'd been 25 the same thing could've happened - it's more that the hospital released her when she wasn't well enough to be in the community instead of transferring her care. The clinicians in a lot of cases are failing people with eating disorders. I believe this is in part because many patients with eating disorders come across as very lucid, can be compelling and can talk circles around the professionals which is often different to other MH patients they see.

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    1. Great reply, Laura, and I agree with you. Your final sentence is particular interesting. Good clinicians should be able to see straight through the deception, but...

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