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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Mark1 Show full post »
sandie
What one would hope is that patients are given the care they need by the most appropriate clinician.i a no expert but i would have thought every psychologist must have a clinical case-load.
Here we see consultant clinical psychologist weekly who is clinical lead for ED team and my understanding is this is because my D requires this level of input.
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Mark1
Still stuck with Eating Disorder Unit 
Six months ago I took this forums advice and tried to secure some additional support for our daughter as the therapist treatment we had received had not had any impact on our daughters weight or mental perspective for over 12 months. I now understand that the therapist is in fact a nurse and not trained in FBT. After a meeting with the lead psychologist in the practice we agreed to try family therapy which took months to organise and we have now had about 4 sessions. Our daughter uses these as a way to express that she has no interest in gaining weight. We have tried to get her to spend more time with us but she continues to go into her bedroom and does not want to be part of the family.  At the same time we are also continuing to see the therapist who although as she admits not qualified at CBT has suggested this could be an area to explore. I really don't know what to do now and both the family and personal therapists are not giving me the weight details - and neither are having any impact. My daughter seems slightly happier in herself , more social and returning to school on a part time basis we were still around 72-75% 2 weeks ago but we seem to be sleepwalking through this process with nothing happening. Any ideas what I can do now - what is the alternative to Cahms - Eating disorder team I get the feeling that they are not bothered and we will continue like this until our daughter reaches 18 at which point we would be discharged but I need to do something more proactive now. 
Trying Hard
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Kali

Hi Mark1,

I'm sorry to hear that you are not able to access the professional support from your team which can help your daughter. I too was not always pleased with the support we were able to access at some points, and I understand your frustration.

Somehow her food intake will need to be increased, whether this is done at home or whether it is done in an eating disorder unit. Can you let us know what she is eating on a daily basis and describe mealtimes, and perhaps we might have some ideas about how to increase the calories and help you to help her eat more at home? I know you may throw your hands up in utter frustration when I write this because if you could of course you would have already increased the calories. But perhaps the hive mind here on ATDT can give you some ideas to try.

warmly,

Kali

 

 

Food=Love
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ValentinaGermania
Did you already think about reaching out to a private FBT therapist like Dr. Sonia Bues in Oxford? She also does skype if that is far away from you. If there are no ED experts your d is in the  wrong place I fear. Sounds like a very strange ED unit there...
Keep feeding. There is light at the end of the tunnel.
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sandie
Hi, i suggested previously that worth getting input from tier 4 service. If you are in England the community eating disorder service is tier 3 specialist service and they should link with a tier 4 service which here anyway includes residential but also community support. The tier 4 here acts like the specialist hub and have weekly meetings with tier 3 to discuss complex cases to ensure tier 3 getting advice and support needed.
When we needed additional support earlier in year, we had some input from tier 4. I recently contacted tier 4 to advocate on my behalf with tier 3 and have requested that we have face to face review with them again to consider if any additional support needed. The way to access is through tier 3. 
72 to75% weight for height is very low and if that is correct and you have been struggling for so long, I wonder if higher level support like residential is needed. Obviously I cannot know if this is right for your D. I just hear your worry about progress. 
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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melstevUK
Hi Mark1,

It is not the lead psychologist who is the best person to see - you need to get an appointment with the consultant psychiatrist, who has ultimate responsibility for your d's health, and explain how and why you are unhappy.  The fact that the team are not putting weight gain at the heart of treatment and allowing your d choices around eating and not sharing her weight with you indicate that they are massively outdated in what they are doing.

Your d is not receiving FBT, which is a particular approach putting parents in control of food and eating - your d is being 'treated' (or treated unsuccessfully) at home.

Please find the name of the consultant psychiatrist and ask for a meeting with him or her.  Do not be put off by any receptionist of secretary - say you wish to discuss things you are unhappy about.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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CED123
Following Melstev's advice is what got us access to better care - and like you I didn't really know this person existed before Melstev told me.
Currently no light; only tunnel 🙁
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CED123
forgot to say: that advice combined with input from Dr Bues who gave me the second validation that my D did need the higher level of care.
Currently no light; only tunnel 🙁
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Seashell
Mark, I’m also stuck with CAMHS. We seeing same people in same format for over 6 months but it’s not working - if anything deterioration. Our daughter has started not attending as she says the weekly meetings are useless and she’d rather be in school. FBT has taught us if something not working try something new but that only seems to apply to parents not HCPs.

We have suggested other things but have been blocked every time as not deemed suitable. We really feel like we being held hostage. We trying to go down private route but the doctors all know each other so they don’t want to tread on anyone else’s toes.

We been at it long enough to know that certain HCPs get more out of our daughter than others and yet we still expected to continue with the status quo while she destroys herself teetering on the edge but never quite ill enough for further intervention.

So frustrating...I really feel for you. I do hope you have some success. It’s bad enough caring for a very ill child 24/7 without spending every waking minute looking for alternative treatments. 

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melstevUK
Hi Seashell,

Have you spoken to the consultant psychiatrist?  This is the person you need to see - your d is not making progress and is getting worse, and this needs to be flagged up.  It is not acceptable.  If she has not put on any weight in six months then they are using outdated approaches and definitely not FBT.

Ask for an appointment and do not let anyone put off - find the name and speak to the secretary.
Believe you can and you're halfway there.
Theodore Roosevelt.
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melstevUK
ValentinaGermania,

Without wishing to criticise - it is not necessarily wise to recommend that anyone in the UK tries to find private treatment.  If you have personal knowledge of Dr Sonia Bues then this is great and if she has had successes with families, then she is worth recommending.   But I know of some real disaster scenarios in the UK where parents have spent a lot of money and all to no avail.  We simply do not have the expertise among private providers or psychiatrists and there is no guarantee that going private will lead to better results.  And if hospitalisation is required, unless you are super-rich, you would always have to go through the NHS to access a bed in the end.
I still think the best thing is to approach the consultant psychiatrist initially - that person has responsibility for the patient overall and can make the decisions about requesting hospitalisation because they are the ones who can access funding.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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CED123
Dr Bues works in the NHS too, in Oxford, so understands the system.  When I spoke with her she didn't take us on as a patient but gave me lots of advice, like yours Melstev, in what I should be asking CAMHS for, in that my D wasn't treatable in the community etc  - and so was very useful in getting a second CAMHS-type assessment of our situation and advice on how to get our local CAMHS to step up. It was after talking with her, and using some of her language in an email, that helped me follow through on the route you suggested melstev (which I had already started on your advice a few months before).  

so basically melstev got me talking to the right person and Dr Bues helped me know what to say.
Currently no light; only tunnel 🙁
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ValentinaGermania
melstevUK wrote:
ValentinaGermania,

Without wishing to criticise - it is not necessarily wise to recommend that anyone in the UK tries to find private treatment.  If you have personal knowledge of Dr Sonia Bues then this is great and if she has had successes with families, then she is worth recommending.   But I know of some real disaster scenarios in the UK where parents have spent a lot of money and all to no avail.  We simply do not have the expertise among private providers or psychiatrists and there is no guarantee that going private will lead to better results.  And if hospitalisation is required, unless you are super-rich, you would always have to go through the NHS to access a bed in the end.
I still think the best thing is to approach the consultant psychiatrist initially - that person has responsibility for the patient overall and can make the decisions about requesting hospitalisation because they are the ones who can access funding.  


I understand your concerns but I know Dr. Bues and she is very experienced and she has helped some families here in Germany that I know personally with great success.
I just recommended it because I know that she helps parents to get the kids to the weight the parents think is needed and that seems to be a big problem with many cahms teams at the moment.
I would also think it is best to contact the consultant psychiatrist, I just recommend it in case that he/she does not help too. I did never recommend that anyone in the UK tries to find private treatment as I know that this is expensive from my own experience. I just recommend it if your current team is no help but part of the problem...
Keep feeding. There is light at the end of the tunnel.
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melstevUK
No problem ValentinaGermania.  It is good to know that there is one experienced clinician who understands the illness and can provide FBT support for families in the UK.  Happy for you to recommend Dr Bues and maybe you can help us find more!!
Believe you can and you're halfway there.
Theodore Roosevelt.
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