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
I hope someone can help me . Our 16 year old daughter was diagnosed with ED 1 year ago we have been with Cahms over that period using FBT. 12 months later my daughters weight is the same. FBT not really working and we are stuck as she does not want to add any additional calories . Our therapist at Cahms has asked us to give all resp to our daughter for food choices which seems to be against everything I read in this forum. She is circa 72% I have now suggested that everything we have tried does not seem to work and daughter does not see any point in living and remains on critical list. I am not sure what we are waiting for as I have advised we can't cope with this at home what more do I need to do before I loose our daughter.
Trying Hard
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Ellesmum
I’m sorry CAMHs seem to be failing you, it’s such a lottery with them and I hear way more negative than positive.

So, I’d suggest you request a meeting with them without your d, write a list of concerns to take and demand they support you in feeding your daughter not collude with her illness.  Secondly if you can’t get them on board, including requesting another therapist can you look for somebody privately, I know the cost can be daunting and perhaps out of your budget entirely. 

Your daughter is 16, you have power still, financially you’re supporting her, have you done the LSUYE?   
There are some great groups on social media for instant advice so I’d suggest those to hear more voices, feel free to message me. 

Your d may not want extra calories, if she did she wouldn’t have an ED, the trick is to make not eating more painful than eating. Are you bumping her calories right now?  Is she on medication? 

If thats your your real name I’d edit your post, it’s not unknown for us to be followed here 
Ellesmum
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melstevUK
Hi Mark1,

I am sorry that you are being let down badly by the system.  This is not FBT - you are merely trying to refeed your d at home without proper support from the team who are clearly behind the times.
I would ask for an appointment to see the psychiatrist on his/her own and complain that your d will never recover if she is allowed to choose what she eats herself, and ask why the clinicians are not supporting you in taking control of what your d eats and getting the weight back on her.

I don't know why some teams are still behind the times - I keep hearing that FBT (which is a particular intervention with a set way of working and which has the best evidence base at present for treating teenagers with anorexia nervosa) has been rolled out in England.  I think that it is more likely that there is an awareness of it but training has not been provided and not all teams have got to grips with what it entails.

The psychiatrist would be my first shot - get a meeting on your own without your d.  If you don't get a satisfactory answer, you have a right to ask to see another psychiatrist although some clinicians may put more obstacles in your way to doing this than others.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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teecee
This is really tough. I’m not sure if I’m understanding correctly...do you mean they want her to choose what you prepare for her or her to choose the amounts she needs?? 
If she is not refed to her pre illness weight + then I don’t understand why they are wanting her to be responsible for feeding herself as she is clearly not well enough to maintain. 
CAMHS encouraged us to back off from being over protective to the point of stifling her which, looking back was the right thing to do for us. We were so frightened in the beginning we did LSUYE however without CAMHS we would have still been doing that now and she would not have developed the social skills, hobbies etc she now enjoys. We were so worried about the suicidal thoughts and when CAMHS suggested we take a leap of faith it was hard but it did work. We had blips along the way but she is a very different person and stronger for it.
having said that she was WR plus some buffer so allowing her to try to learn how to feed herself again was done with that buffer. She is thriving now and does really well in feeding herself but it was a slow process. 
Please make sure she is really WR before giving her independence to feed herself. My D is now 17 (was 15 when in crisis) and we still cook tea/monitor what she eats. She does not have full control. Plenty of time for that...
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Foodsupport_AUS
Welcome to the forum. When you say she is circa 72% I imagine you are saying 72% WFH, and that this has not changed over one year?
FBT as melstev has says is a manualised therapy, it has been changed a bit in the UK, but it appears that many units are not delivering it appropriately. Firstly if there is no progress over a few months (some studies suggest even the first month) then new strategies or supports need to come in. If you are doing FBT you are responsible entirely for feeding her until stage 2 - this means you get to chose, alter, increase her meals. None of this sounds like what has been happening. I agree with Melstev that asking to see the lead treatment person and being very specific about looking for more treatment, more support for increased weight is the next step. Does she need inpatient care? Is there any day options available? Do they offer family courses for support to improve your efficacy in re-feeding?
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Hendrixt
Hi Mark

I am from the UK and accessing CAHMS. I am really concerned to read that you are a year down the line and still in this position. Are you absolutely sure that this is FBT and that you have been referred into the community eating disorder service rather than general CAMHS. Try reading up on FBT and then ask yourself is the treatment compliant with the FBT method. Useful books are;

Anorexia and other eating disorders- Eva Musby (our CAHMs, and many others recommend this )

Help your teenager beat an eating disorder-James lock 

When your team has an eating disorder-Lauren Mulheim

good luck




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Pingu
If camhs aren't working you can look around and ask for a individual funding request.i found a private outpatient specialist centre and my GP has just put the request through. Unfortunately it maybe too late as she is going back IP but when she does come home she is NOT going under camhs again. They have completely failed her. 

So I would look around and if you find an alternative you can put a rationale together and apply for the funding from the NHS to be used on an alt to camhs
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melstevUK
Pingu, I am delighted you have a GP who is supporting your request for your d to be treated privately. I hope you get the funding. Another patient I advocated for was told categorically that funding for private treatment was not an option. Your GP is clearly supportive and enlightened which is a positive in your situation at least . 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Pingu
What I have done is raise a complaint reg camhs and put a rationale together that the NHS can't meet her needs so I have a cheaper alternative. My son has autism a d when I had similar issues with care found the MP route was also very helpful 
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Caz
Your story is exactly the same as ours, a few months ago.

Mel is right, you need to get a review with a senior psychiatrist. We weren't told there was one involved with our daughter's care, only the junior newly qualified psychologist that we saw regularly.

It might also be worth getting a copy of your daughter's medical records using a subject access request. This is where we found out a lot of serious omissions and errors in our daughter's care. It also brought up the name of the consultant psychiatrist, seeing him really started to turn things around in our daughters case.

I think a more senior member of staff has to approve requests for records so it might be another way of getting the attention of senior staff to get better care there or elsewhere.

If I had my time again I'd have put aside my blind trust in the professionals and asked a lot of questions. Things got much worse before they got better but I was too polite to question the awful care we were getting. I really regret not being more proactive sooner.
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tina72
This is not FBT at all what they do there and it is against all ED treatment standards.
If I had waited till my d WANTED to add some calories I would have waited until today.
Unbelievable that you have such a bad treatment there.
Get on your feet and get a new and really FBT trained therapist there. Do anything that is needed for that. Your d cannot get better on such a bad intake and weight.

Call Eva Musby, she can maybe help with ideas what to do and who to contact.
Keep feeding. There is light at the end of the tunnel.
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CED123
Mark1 - sympathies and I understand. our CAMHS ED team is rubbish too. (@hendrixt - I think you have been lucky with your team)

Sorry to side track but @Caz - how do I get a copy of my D's records? will they just give me a copy? it sounds like you had to do a formal process. @Pingu - do you have to complain first to make a private funding request?  I'm trying to find an alternative to our CAMHS. 
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Caz
CED - you need to contact the Data Protection Office at your NHS trust, the email address for our trust was on their website. Usually there will be a request form you can download. If there's not a central website just ask your local CAMHS office, they have to let you have the info under the data protection act.

They don't make it easy though, we had to scan in birth certs, witnessed form, proof of address etc.

Then they email you the pdf file of the records within 30 days.
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CED123
Thanks @Caz 

@Mark1 - do you know what your CAMHS criteria are for IP admittance? I think here it is <75%. Can you push them for IP?
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Mark1
Thank you all for your helpful feedback . Aplgs I have got the terminology wrong we are with the eating disorder team. The only 'support' we have is the FBT which does not prove helpful . We had 3 sessions of CBT but this resource left and we have only seen a Psychiatrist once . Should there be a Psych. monitoring progress?At this stage I have booked a review of our overall support with the therapist but I am thinking I need to have this reviewed at a higher level - is the Psych. the correct resource to put the request to ? LSUYE - can someone explain what this is please. ?
Trying Hard
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scaredmom
Life stops until you eat: LSUYE
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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sandie
Hi, i think you are absolutely right that your D's treatment needs to be reviewed and good that you have a review mtg booked with the therapist. Is this the lead clinician with your ED service as i think they need to be involved? In my experience, we are supported by tier 3 ED service but also had input from tier 4 service when weight was very low and there was lack of progress. This largely consisted of a couple of assessments and consideration of inpt on ED unit. With the lack of progress you describe, it seems to me the tier 4 service needs to be involved. A specific weight for height% shouldn't be the only admission criterion used.
From your description of your D's mood, i suggest important to have review by psychiatrist and assessment for medication also. Wishing you strength.
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tina72
Mark1 wrote:
we are with the eating disorder team. The only 'support' we have is the FBT which does not prove helpful.


What they do there and offer you is no FBT due to FBT standards. Please question if the therapist is trained in FBT and has a FBT licence at all.
Please asked for a trained FBT therapist that is doing real FBT. Read the FBT standard of Lock/LeGrange if needed to find out what they SHOULD do.
Keep feeding. There is light at the end of the tunnel.
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hopeful_mum
Sorry that your not getting the support and treatment you and your daughter need. I would just like to reiterate Hendrixt advice to read the book 'When Your Teen Has An Eating Disorder by Lauren Muhlheim. It's an easy read and not too bulky book which is exactly what you need at a time like this. The book will succinctly give you all the practical advice you will need to support eating at home. Also on a sidenote, I run a parent support group in Dunstable, UK. Not sure if that's near you but you're welcome to join us at our sessions if you think it might help you. Our next session is this Friday morning. Let me know and I can give you the details.
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melstevUK
Mark1,

You need to see the consultant psychiatrist who your d is under.  The therapist is the one who has let you down by giving your d choice around eating.  The fact that your d is at the same weight as she was a year ago is indicative of real treatment failure and you have a right to report it to the Health Authority if you don't get any joy from the psychiatrist.
You need to ask about FBT and ask why it is not being used and say that from now on, you want to see a different clinician who will allow you to be in charge of your d's meal plan and who will support this structure.
If she sees the same person it will be difficult to re-create the relationship.  It would be better for you to have a fresh start with someone different.

Caz:
"We weren't told there was one involved with our daughter's care, only the junior newly qualified psychologist that we saw regularly."

None of us can be sure in any case that we are dealing with a qualified clinician in appointments - my d thought she was speaking to a psychiatrist and it turned out he was only a doctor in his second year of training, (FY2) not even a psychiatry specialist.  And when clinicians are brand new - they have no idea that eating disorders patients have to be treated in an entirely different way to patients with other diagnoses.  And there seems to be no kind of brief training to ensure they are up to speed. It is very worrying.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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Caz
Mark,
Maybe go for a review with your current therapist to try to get an appointment with the consultant psychiatrist. If you get ignored or nothing changes then consider making a complaint at a higher level until your daughter gets the help she needs. Get the medical records if you need to find the names involved. You do need a different more experienced therapist anyway from what you say and definitely a review by a consultant psychiatrist.

Don't accept a trainee psychiatrist as Mel says, they don't have the experience. We saw one just before things got bad that was extremely negligent. They ignored the longstanding issues d did have, leaving them untreated and created many problems with labelling her with something else based on mostly false evidence. This led to her dropping weight, many crisis and eventually 3 months inpatient with more ineffective therapy until the real issues were addressed. This was all probably avoidable had she seen an experienced clinician.

Also have you considered anti-depressants if your daughter's mood is low? I placed so much hope in therapy but it was almost completely ineffective over the year. The only things that made a difference in my daughter's case were supported eating and anti-depressants. The anti-d's have been invaluable in reducing her depression and anxiety so far.

Mel,
Yes it was the consultant psychiatrist that finally turned things around in our daughter's case (and your advice that there was one involved, despite me insisting there wasn't!)

I had asked in emails for months for the psychologist to be changed as she was at best ineffective, at worst, extremely damaging to my daughter's health, unfortunately they were emails to her and she ignored them! We weren't told there were more senior staff involved in my d's care until it was almost too late.
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melstevUK
Caz,
You have had a very tough and tricky ride indeed but I am glad finally you got the help you needed. 
It is worth knowing that every ed patient, and mental health patients in general, as with physical health, will be placed under a consultant and that consultant will be a psychiatrist.  I understand that there are consultant clinical psychologists but the consultant psychiatrist has overall responsibility for patients as they are medical doctors who have responsibility for physical health and prescribing as well as for the diagnosis and treatment of the mental health condition. 
Patients may never meet the psychiatrist but I imagine that will be in very busy clinics and mh services where patient loads are high. It is normal practice, I believe, for new patients to meet the consultant psychiatrist, but always worth checking as it does not always happen, and the experience and qualifications of team members cannot always be guaranteed. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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sandie
Hi, in my experience the responsibilities may differ in different teams, with respect to who has clinical leadership for service and this may be consultant clinical psychologist. Here a paediatrician is contracted to oversee physical health and a consultant psychiatrist has responsibility to assess and treat mental health conditions.
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teecee
LSUYE- practically for us that meant supervising her 24/7 and I mean just that. 
She didn’t do anything without us and actually there was no time for anything other than food....6 x times a day. 
We were advised by the clinician to get Netflix and hunker down at home for as long as it took to refeed. Netflix was a good distraction for us and got us through the days. I am convinced that she quickly regained her weight plus some as a result of this method however it doesn’t work for everyone. We had to find our Ds motivation in a world where she couldn’t find a reason to live. Very soon we found out that independence was important to her as you can imagine the boredom that came with LSUYE! When her health began to improve so did the desire to not be monitored 24/7 by her parents. She went from not wanting a life or caring to slowly building up a life for herself. She is now at college, learning to drive, attending social functions, rediscovered a passion for tennis (coaching tiny tots and 1x lesson a week - not performance tennis doing 24 hours of training a week!) plus lots of other opportunities that come along. 
18 months in this journey can bring lots of changes. We still have a way to go but we are happy with the progress so far. We are looking forward to eventually enjoying a family holiday where we don’t have to consider which eatery is ‘suitable’ ....I’m refusing to go away until we are at that point. D is desperate to go to DisneyUSA again and working hard to show us that she can challenge herself to control food rather than it controlling her life. When I post that we are on our way to Disney then our journey will be complete !
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CED123
In case it's useful, I thought I would share what I learnt today about the structure of our CAMHS ED team:
- there are 4-5 counter practioners who do the week to week therapy (background in social work, or ED nursing - ours is not FBT trained but is new, so I don't know if the others are)
- they are supervised by a clinical psychologist, who is FBT trained
- and then I think all of them are supervised by a clinical lead & psychologist, who with the team leader (more of an admin person) runs the team.
- at the top of the tree is the consultant psychiatrist but they are PT - and I don't know if they line manage anyone or just input expertise. There is a second consultant who does a different part of the area.
- there's also a dietician and family therapist.

the clinical psychologist overviews but doesn't have band width to get actively involved weekly with a patient apparently.
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