F.E.A.S.T's Around The Dinner Table forum

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Caz

Apologies, just need a rant really. It helps with the worry to write it down.

D aged 16 is inpatient 8 weeks now with anorexia and, we found out later, borderline personality disorder traits. Now we've found out the consultant has changed it to BPD with anorexia traits and that worries me. Her weight will drop again as it did before and no one will help this time because they'll say it's not anorexia and she's attention seeking, which is the opposite of the truth. She went to an ED unit for over a year before her health deteriorated with low mood and self harm.

She put on weight at first in IP. Then got to her fear weight she won't go past and has been stuck there for a few weeks. She's on a meal plan for 500g increase a week but that's not happening.

She has support workers supervising her meals, until she spots an opportunity not to eat and sometimes gets away with it.

The is a general ward. The consultant had never heard of FBT, despite him working at the Maudsley Hospital in London, which is one of the places where FBT started and where my d is inpatient. Their anorexia care is to give her worksheets on hunger. However, with the help of a wonderful kind angel on this forum we got eating support reinstated.

The consultant there says unless you are at a low almost skeletal weight you don't have anorexia. According to him it's nothing to do with fear of gaining weight or behaviour, just low weight. He's seems to be very last century in his views.

I know when we go home and it's just me she'll be back to how it was before when her weight drops - throwing her lunches away, hiding food (we're still finding food in tissues behind furniture), 3 hour meal battles, turning foods into fear foods until there's almost nothing left she'll eat, the rituals around food, exercising all the time setting the wii fit to 5 stone goal, all the secretive stuff, and all the physical stuff when her weight drops lower. And the anxiety and depression gets worse.

Now d is at 44kg some of those traits aren't showing so much but when her weight drops they come back. But this time we'll have no support and no hope of support in the future as they'll say it's BPD not anorexia. We've got no hope now have we?

I'm in despair about her future. All the unit she's in do is try to prove BPD when she doesn't fit any of the symptoms except self harm and emotions. They spent an hour today trying to persuade her that her crying and low mood means she feels empty so that they can tick another BPD box when she says she doesn't feel empty. Or that she fears abandonment when that's the complete opposite of her. Nothing fits. The consultant is arrogant, rude, talks over me, refuses to listen and says the opposite about anorexia that the eating disorder place she went to said. He won't now discuss anything unless it's about BPD, not anorexia or depression and I fear for her safety there.

He has a fixation on BPD and if the symptoms don't fit, he's going to make them anyway just to prove a point. We're open to BPD traits and DBT but not denying the anorexia as he is doing.

After I complained the consultant got my d involved, criticising me and telling d she didn't have anorexia. The stress made d self harm and she ended up in A&E. I complained about him involving her, got ignored as usual. Nobody is listening, they don't even reply.

There are safety and trust issues around meds at that place but nobody cares. The consultant is high up in mental health services so can act in anyway he likes it seems. He already said "we don't follow NICE guidelines".

Everything has got worse, not better and when we go home, without the support workers, will be impossible. I need to give up and work on accepting our future instead don't I?
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Caz
Thanks Jojo, I didn't realise that. I need to look at that, maybe I can find an eating disorder specialist to help.
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melstevUK
Hi Caz,

If you ask for a second opinion, ensure it comes from a doctor outside the Trust that this consultant is under.  I tried complaining on behalf of a patient as an advocate and it was a waste of time and a real stitch-up.  I don't want to put a dampener on things but I think you will be wasting your energy because this guy is too high up and too respected for anyone to be able to criticise him at all.  Right now you might not have the energy to fight on this front.

I would probably speak to my d and explain the neurobiology of the illness, tell her that she simply has to eat and gain weight if she is to battle the illness down and get her life back, and try and get support to get her up to 50 kilos in hospital.  And then I would take her out of hospital on the condition that she cooperated with you and stuck to a meal plan.  I would be brutally honest and tell her she is getting a raw deal, that these are not experts in spite of what they are saying, and tell her she needs to get her life back on track - even if you cannot get a full recovery. 
I took my d away from any clinicians if I thought they were doing more harm than good, all while telling her that she had to keep fighting until she was able to put on weight.  It took us a long time, but we worked together for many years.  I could not persuade her to go above a certain point until she herself was able to do it in her mid twenties, but I always encouraged her to keep seeking clinical support in the meantime.
Could d go back to the day service if she puts more weight on and gets a bit more insight into the illness?  Keep drilling the message into her that you will not put up with all the resistance this time round, that she needs to become more adult and try and understand that the illness is stopping her eating but that, however hard this journey is, you won't stand by and allow her to throw her life away to it.
Believe you can and you're halfway there.
Theodore Roosevelt.
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blondie
Gosh what a twit he sounds - I'm so sorry you're having to go through an even more difficult experience than it already is.

Do you mind me asking why did they decided to put her on a general ward rather than within the specialist ED unit? It sounds like the BPD "diagnosis" came more recently....
Is getting a second opinion privately something that you could afford? I wonder if that might be quicker?
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ValentinaGermania
Caz, I have later more time to reply better but I want to encourage you to contact Eva Musby asap. She has pretty good connections in UK and I am sure she will try to help. Please get in contact with her. This must stop asap.
Keep feeding. There is light at the end of the tunnel.
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ValentinaGermania
Caz wrote:

Apologies, just need a rant really. It helps with the worry to write it down.


Please do never apologize for ranting here. This is the best place and for most of us the only place to do that. You are welcome to rant whenever it is needed.

Caz wrote:
Her weight will drop again as it did before and no one will help this time because they'll say it's not anorexia and she's attention seeking, which is the opposite of the truth.
She's on a meal plan for 500g increase a week but that's not happening.


That needs to stop asap. She will go backwards very fast if she does not eat enough and it is a crime against humanity not to offer enough food to a starving child in year 2019 in UK. Please contact anybody that is awake in UK. Eva, higher levels, politicians. This should not happen.

Caz wrote:
The is a general ward. The consultant had never heard of FBT, despite him working at the Maudsley Hospital in London, which is one of the places where FBT started and where my d is inpatient.


A professional that never heard of FBT is no professional. It is evidence based gold standard for 30 years now. That would be the same as if a cardiologist would tell you that he has never heard of a heart transplantation before. We had the same problem here but I live in Germany and in UK this SHOULD be different. Here they really did never hear of FBT before...

Caz wrote:
The consultant there says unless you are at a low almost skeletal weight you don't have anorexia. According to him it's nothing to do with fear of gaining weight or behaviour, just low weight. He's seems to be very last century in his views.


That is totally outdated and bullsh*t. There are a lot of patients diagnosed anorexia that are within the normal weight range. He is a danger to all ED patients. That must stop asap.

Caz wrote:
The consultant is arrogant, rude, talks over me, refuses to listen and says the opposite about anorexia that the eating disorder place she went to said. He won't now discuss anything unless it's about BPD, not anorexia or depression and I fear for her safety there.


I have no words for that. I just know how you feel because that happened in IP here. We were able to take our d home to stop that because she had no medical issues that needed IP stay. How is it there? Can you just take her home? NOT to get enought food in is something you can do at home....

Caz wrote:
The consultant is high up in mental health services so can act in anyway he likes it seems. He already said "we don't follow NICE guidelines".


Nothing to add. No words for that. A person that is high up in mental health service has never heard of FBT and can say that he is God and ignores the guidelines? Please do whatever is possible to stop that. This is very dangerous what is happening there and going the total wrong way.
Keep feeding. There is light at the end of the tunnel.
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ValentinaGermania
Jojo,
I just wanted to say that I am totally impressed how you are already able to help others here although you are still in the bad days too.
You are a very precious member of ATDT and I just want you to know that we all really appreciate that.
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
Excellent jojo, hope your email helps, this is a horrendous situation and unfortunately not the first time I’ve heard it.  I think someone in a FB group had a similar situation.  Happy to try to find out their outcome x
Ellesmum
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