For all my readers who are rolling their eyes at "another eating disorders thing" blog, please pay attention. Especially those of you who live in the UK.
You NEED to know what happens to parents of children with eating disorders. You NEED to know how crap our mental health teams are in this particular area and you NEED to know that, although the child is now safe and Inpatient at a good facility, she came close to dying at the age of 14.
If I don't tell you, you will read some "fluff" piece in the Daily Mail and pass it by, thinking that somehow it was the parents' fault for not stopping a wilful child from making herself sick. That is not how it is.
"My daughter is 14, has had bulimia since she was 12 (that we know of). We sought help from the GP Dec 2011.Ref'd to CAMHs & been having mixture of professionals moving in and out of our lives, usually seeing someone every 3 weeks. A psychologist at the moment & family therapy,( we dont gel with the counsellor.) Weight is a little below normal, size 4 - 6 clothes. She eats up to five huge meals a day and vomits every time she eats. In between she snacks. The snacks usually stay in. I have food hidden around house,locked in shed and I buy little and often as I have three others in the house to consider. Often we run out of food. Food bills are enormous. She starves herself until she gets home from school when I am not in & house is empty. Mood swings are vile. Violence against me is frequent & police often involved.
How do I manage the food malarky - daily shopping? locks on kitchen door?
Am I missing out on any treatment that I ought to be getting?
What works? Anything?
How bad is this level of bulimia? How bad could it get?
No side effects that are visible yet ie teeth rotting, blood tests weekly are normal.
I have read books & just ordered another - Helping your Teenager Recover from an ED - by Lock and Le Grange.
Local pro's are looking into inpatient care but cant locate any atm. (UK, Sussex )
She's on medication - prozac 40mg daily.
Dont know what to do with her to help get rid of ED. She doesnt want help. Pro's are too soft & they let her walk away from talking if she doesnt feel like it! Wet Woosies. Sorry this is long - its my first time.
D 14, bulimic since age 12.
I reached the end of my tether, tied a knot in it and am hanging on."
Nelly's first post
in June of this year. To understand just how dangerous purging is and how lethal bulimia is, please read this
. BN is very very lethal very quickly.
To be honest, you have to be really desperate and frightened, as a parent, to go trawling round the internet, find a forum and post to a load of international parents from different countries and health systems. It takes a lot of courage and often means you have reached the nadir. Nelly had.
The frightening thing is that, from the outside, Nelly had been receiving help from her local West Sussex CAMHS (Child and Adolescent Mental Health Team) SINCE MARCH 2012. Fifteen months and a spiralling decline.
Nelly recently contacted her local MP and has managed to get a copy of her notes - reviews and such like. It is becoming clear that the East Sussex CAMHS team lay the blame for her daughter's eating disorder firmly on "dysfunctional" family matters and on her parents "not setting boundaries". Really? Really?
"Mother seems to function at the level of her children"(October 2012). WTF does that even mean?
"It is clear there are no safegaurding concerns, as both parents, well meaning and caring for their children seem to struggle to implicate sustained boundaries..." (Oct, 2012)
So the parents try to put in place "sustained boundaries" with regard to X's eating disordered behaviour and then the worst happens. X tries to attack her parents with a knife and the police have to be called. This child is 13 at the time.
"X has identified when family try to intervene while she is bingeing and purging that she can become threatening and aggressive. She has threatened parents with a knife which has caused police to enter their home. has agreed not to do this in future ...she will let out her frustrations on inanimate objects such as footballs, cushions. X is reluctant to engage with services.
For the next two weeks the family will not intervene in X's pattern of eating." (Undated but between above incident and January 2012)
Sorry, East Sussex CAMHS but at what point is a 13 year old girl, with an eating disorder, high anxiety, refusing to "engage with services", who has threatened her parents with a knife, is engaging in medically compromising self-harm and progressively declining both mentally and physically NOT on your radar as someone who needs urgent, specialised treatment. Er....that would be late in 2012, then. Meanwhile, why not disempower the parents and bar them from intervening in the "pattern of eating"?
In January, a specialist team were supposed to visit twice a week for the next four weeks. Needless to say the enthusiasm (?) wore off quite quickly and these visits ceased. X refused to be at home when they came round, so they gave up. (There's a surprise)
By this stage, the self harming was reaching alarming levels. Nelly was getting frantic and demanding more care for her daughter and her family.
The final letter, from the Chichester CAMHS team to the private hospital, where X is now on 24/7 one-on-one care and SAFE, was probably the most condemning of the family and the most blatant "butt-covering" crap I have read in a long time.
"History - over the first six months of 2012 it became apparent there were systemic issues within the family, which made it difficult for the family to often attend or even bring X to her individual sessions...(Red flag. I would call this a red flag that something is really wrong. You seem to think it is the parents fault. Did you support them? Or help them to find strategies? Or do your job in any way?)
..in Family Therapy sessions the extent of the difficulties the parents experience in laying down boundaries for their children became quite clear (And you helped how? What "boundaries" were you expecting? Did you make these clear? Write them down? Discuss them? Or are they in the Care Plan that is "not in the appropriate form" to share with the family?)
..her mother especially was becoming quite anxious with regards to Xs bulimia and started to text the CAMHs team daily. (As is her right. To me, that demonstrates she is a good mother trying anything to get help for her sick child. You, on the other hand, make it sound like she is a pain in the arse to you. Stop you reading the latest Heat magazine did it? You obviously have not been reading anything 21st century about eating disorders.....)
..she was frightened to stop X from raiding the freezer and binging. The family seemed to be overwhelmed by their childrens behaviours and at times were confused by the multi discipline team supporting them. (Firstly I question the "support". Secondly eating disorder behaviour is overwhelming)
The team offered outreach work...but there were occassions when the family would let X sleep vs attending individual appointments...(Note from Nelly: "once when X was ill she was asleep downstairs and they woke her up anyway")
.At home her parents feel it is difficult to stop her and Nelly in particular can be quite scared of X(Was this before or after you "agreed" that the family should not intervene in the binge/purge cycle and before or after the police had to be called and I am sure it was during the horrific periods of self harm)
..Our observation is the children have more control than the parents (Sigh. Sigh. Sigh)
..We are concerned that if the family continue to engage in such a fragmented and disorganised manner with the supporting services then a referral to the safeguarding team would be appropriate....(Like the family is "choosing" to live like this?)
Xs view - X is very resistant to change with regards to her bulimia. When asked what she would like to be different she said she would like the everyone to stop arguing...(A family of an eating disordered child are under unimaginable stress - just as any family of a very sick child is.)
..consideration to safe guarding issues which may arise and have already at times impeeded the family's therapeutic engagement within the community setting." (What is a therapeutic engagement within a community setting?)
For those of you who have not had a child with an eating disorder, this may all sound very plausible. For those of us who have, this reads like a well-worn record of ignorance, stigma, platitudes, parent blaming and arse covering.
Shame on you, East Sussex CAMHS, Chichester. If I can learn about eating disorders, so can you.
One question I would like the East Sussex CAMHS team to answer
If this child had been diagnosed with schizophrenia instead, would you be saying these things about parents, dysfunction, "resistance to change", boundaries and such like.
I don't think you'd dare, for fear of the backlash from very fine organisations such as Rethink. The parents of children with eating disorders may not have had much of a voice up until now, but we are coming over the hill.