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

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NELLY_UK
This is a new thread as the last one got too long. This is my despairing cry for support when camhs can not do it. Link to last thread:http://www.aroundthedinnertable.org/post/bulimia-part-3-the-next-stage-6835820?trail=25
I cannot believe - oh wait, yes I can, the Dr who threatened me, set the weight just right, got her there then when she dropped he was happy to leave her at the new lower weight ' to minimise stress' now has raised the weight requirement again, lost everyone in the families respect and trust- he is on the MHA board who are going to take control under section of my Ds life. What do I do? Sobbing with the injustice of it all.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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Gina
Oh Nelly, here is a cyber hug and a virtual hand to hold. I don't really know what to say, the hell you are enduring is exacerbated by the incompetence of your CAMHS. Our bunch are no better, they have pretty much left us to fend for ourselves now because d refuses to engage with their DBT instructor and they won't try another way to reach her. It seems to be 'oh well, if you don't want to get better there's nothing we can do', attitude. They only want easy, compliant cases, all a good boost for their egos!
D is at a good weight now, just over 9st, but her mind is another story, we have restricted eating, spitting out, self harm and still not wanting to recover yet wanting to learn to drive and go to uni!! Don't think she sees the irony.

Thinking of you, take care, go for a beach walk, breath in the lovely sea air and fight yet again. Xx
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AUSSIEedfamily
Dear NELLY_UK,

Guess we will just have to get all the e-mail addresses of the various people at the centre of this mess & do what we did for Butterfly7 in Ireland.

Can you put the addresses on an e-mail to me & lets start the campaign right up to David Cameron. Do you have the addresses for your local media & some of the London Media??

Warm & Kind thoughts to you

 
ED Dad
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Blommie
I have no advice for you but I am sending you a virtual cup of tea and a hug. I am so sorry you have to be going through this [frown]
I would love to get on board for any emails if you feel this would help at all. Do you feel that she needs a different approach? What would you like to see your team provide for you and for your precious d?
D officially diagnosed April 2014 at age 13 after being hospitalised on a medical ward due to severe restriction. Been refeeding at home, doing FBT through CAMHS. Living life moment by moment
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NeeNee
Nelly,
I am so sorry for all that you, your d, and your whole family have to endure. And you're right, bulimia IS too hard! I do not deal with what you have to deal with in my home, but it is a horrible disease, and you are living with horrible support from the health care system that you pay into as a taxpayer and citizen. It just doesn't seem right. You have fought (and continue to fight) so hard for your d to get the care that she needs. I pray that she will get an IP stay to get the help that she needs and your family can get a break from it all while she is there. It is clear that this disease is beyond her (and your familly's) control and she needs much more help then they are offering at the moment. Wish I could offer you more than prayers (and an email!), but know that I am pulling for you all over here.
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Sotired
It all sounds really hard.i just want to clarify,do they want to section her,but you don't want that?or are you ok with her being sectioned but don't want that doctor,who btw sounds horrendous,involved in any part of your ds treatment?i want to make sure that I'm helping you in what you want before I email on your behalf.its such a horrible crappy journey we are all on with eating disorders and it can be made so much worse by incompetent doctors.first do no harm...he seems to have forgotten his oath as a doctor.can you use your patient bill of rights to help you receive help from another doctor?
Sotired42
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K63
Hi nelly
It's terrible what you and your d have to go through , I thought the supports would be better anywhere else in the world than here .We are left to our own devices so much to struggle hour to hour. I don't think any of these people have any understanding what it's like to live with this illness. It's so hard on us carers and families and our children and adults are tortured from it . I have no advice as we are struggling through each day but am thinking of you and hope someone else can help. I have taken my d to a nutritionalist , this is 3 rd one since diagnosis. Some of them even though they say work with and specialise with eating disorders don't get it.
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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enoughalready1
I have no answers but you have my support and my prayers today.
Mother of 21-year-old
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Lily45_UK
Hi Nelly
I am so sorry you are dealing with this, it seems the service in the UK is s----t.
I am also in the UK and not happy with the service we have and are getting, maybe we should all emigrate to the US they seem to get good service there.  Am happy to e-mail for you.
Hope you manage to get away for a holiday and have some down time for yourself.
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NELLY_UK

I have complained to PALs and the complaints team - complaints@sussexpartnership.nhs.uk and I have contacted the Care Co-ordinator to get him to get another Dr in the room. I just do not trust this Dr at all. He is an ED specialist but he has made some very bad calls lately. I also know that BJUK had a bad experience with him and his re-diagnosis of her D. My D will not be with him in a room now following his bad behaviour and also because he has really mucked her about over the weight setting.
He has previous.
I have a date for the SLAM (maudsley) assessment so feel a bit more positive.
Andrew Tyrie is my useless MP.
Jeremy Hunt OMG say no more - Health Minister of course.
Norman Lamb is a pretty good person when it comes to mental health issues and he is fighting for us all. Lib Dem running for leader.

xxx thanks everyone for the messages - it really helps me. xxx

NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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AUSSIEedfamily

Dear Nelly,


https://www.facebook.com/groups/FEASTforparentsED/

http://www.theguardian.com/society/2015/jun/21/eating-disorders-nhs-trial-anorexia-bulimia

Evidently

Its initial results show that cutting long waiting times makes patients much more likely to engage with the treatment; reduces the high dropout rate from such care; helps patients recover more quickly than normal; and is hugely appreciated by patients and their parents. Although only 45 patients have so far benefitted from this innovative approach at the South London and Maudsley (Slam) NHSfoundation trust, it has the potential to help end what Schmidt calls intolerable waits for urgent treatment.

“We have transformed the care and lives of these young people. We can already see that this is really making a difference,” said Schmidt. “People’s recovery is brought forward so much, patients actually engage in treatment – it’s unusual to find eating disorders sufferers who take part in treatment as willingly – and parents are utterly delighted. Eating disorders are such a burden on families, in which every meal is a battle and you worry that your child might drop dead because of the sudden death associated with anorexia, that parents are very glad to have such expert help so early and to be so involved.”

Advertisement

In most eating disorder services, up to 40% of patients drop out for complex psychological reasons, and the risk of that happening is higher the longer they have to wait to start. Dropout used to be 30% from Slam’s eating disorders service; it is down to 13% among Freed patients.

So why the delay from the pollies to implement this???

ED Dad
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NELLY_UK
Three teeth crumbled yesterday. Absolute hysteria. Then later after she was sick she comes for a hug and tears and how she can't stop it's too strong.she has given up fighting it. I said about voluntary IP and she won't. She says she will wait until they make her go in.
I cannot help her. She won't be helped.
Thank you for your emails people. I hope someone does something within camhs if they get a few more complaints.
Xxx
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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Lily45_UK
Nelly
I was thinking about your d last night is it possible your dentist could get involved and contact Camhs on your behalf to push things forward.  Maybe a professional would hold more clout than other mothers.  I would certainly make the dentist aware of the seriousness of the situation.
Sorry for what you are going through.
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NELLY_UK
The dentist works in isolation and I complete a form everytime with details of health issues.
The GP refers everything back to CAMHs, as do social services and the dentist doesnt get involved. I see a different one every time.
There is no joined up approach to health care generally. Silo syndrome.

Saw The Guardian article ED Dad. I think we are past that window of 'early treatment'! We wont be selected for the trial.

Teeth are being looked at today and fixed I hope. I am going to ask if there is a coating that can protect them.

Kite44, Things cannot be pushed forwards because other than IP (and there are no beds) she is a normal ish weight so there is nothing to push her forwards into. She gets everything they can offer. This is it.
What do you have available that you were thinking of? We cant have DBT, CBT we get FBT monthly, individual therapy is voluntary and that's all there is. Urgent help for a crisis are no help, they saw her weekly and disempowered me and H very effectively.

Just lil ol me.
[frown]
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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NELLY_UK
Teeth were shaved down to smooth them off and left. Dentist didn't read the notes so didn't know about the bulimia and wondered why they had deteriorated. I couldn't say in front of d as she would have got angry and upset and she was happy after a good day at work.
So they don't even use their own notes system let alone communicate to other healthcare practitioners.

Dr g is no longer doing the MHA with d. We haven't got another dr but he won't be there. Phew.
One relief this week.
Oh and bf went to the passport office and has got his passport sorted- relief 2!
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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BJUK
Oh I am so glad for you that Dr G won't be present at the MHA! You will have a much better chance of some good coming out of it. Also, thank goodness for the passport, you all deserve a holiday and hopefully change of scenery will bring some welcome relieve from the mayhem.
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Lily45_UK
Hi Nelly
I don't have any more available than you do apart from the fact we are paying privately for CBT.  Would more than once a month FBT make any difference or a different set of people than the current team you are seeing at Camhs.
I wish I had the answers, enjoy your holiday.
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NELLY_UK
Well since 10/6 we have seen no one. D is happier than usual and has stayed at 51.4kg for several weeks.
She is expected to gain a kilo by mid July as far as we are aware.
The MHA looms and I don't know what that is doing to motivate her.
She got a lovely message from a friend who is recovering with a great big cooked breakfast and a funny comment. That too has helped her.
I am grateful for any small chinks of light in the day.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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NELLY_UK
Omfg - 7 hours of binge purge snack binge purge snack and on and on. I am exhausted and not really doing anything except try to stop her eating everything in the house.
Aaarrrrrrggggggg!
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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AnnieK_USA
The only way I could deal with it was to lock up all the food and serve appropriate meals and snacks at appropriate times. Otherwise all was chaos and physically dangerous to my D and literally unbearable for the other people in the house. Your out-of-control D needs boundaries and all the adults around her insisting on healthy behaviors, whether at home or inpatient/residential or intensive outpatient. Things need to be arranged so that the only option is the healthy behaviors.

I know this is all next to impossible for you in the UK, and I think the lack of treatment and the awful excuse they have for "treatment" is criminal there. Wish your D and you and your family were not going through this hell.
Daughter age 28, restrictive anorexia (RAN) age 11-18, then alternating RAN with binge eating disorder and bulimia with laxatives, is in remission from EDs for 3 years after finally finding effective individual therapy. Treatment continues for comorbid disorders of anxiety, ADD and depression. "Perseverance, secret of all triumphs." Victor Hugo
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NELLY_UK
I have an open plan house. It's impossible to lock stuff away. My son has a fridge but he leaves stuff out all the time. I think he does it on purpose to make the point that it's not normal to lock food away.
I have actually given up. It's too hard.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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Sotired
Hi nelly.
I am n NZ so had to look up residential care for your d.what bout the priory group or timber lines?they both offer residential care.you mentioned the mental health act,is that process underway?you have done an amazing job,I'm just wondering if if your d went residential for a bit you might have a chance to regroup.also,faced with people who have the same issues that she does,maybe your d would face her issues too.apparently you can get help with funding or use private medical insurance to help cover costs.
Going residential for our d has finally started to help.wont lie,we still had a few hospital admissions,but we can see there is a difference in her now.she is finally trying to get well.please please look into these options if it's possible,you have fought so long and so hard and maybe it's time for you to have a break from it a bit.
Sotired42
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NELLY_UK
So tired, she has been offered the opportunity to volunteer for IP but she won't and they won't force her. We don't have medical insurance either so reliant ion the amazing but stretched NHS.
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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MarcellaUK
We don't really have a tradition of residential treatment centres here in the UK.

While the Priory Group, and others such as Huntercombe and Cygnet, offer treatment away from home it would be sort of half way between a hospitalisation and residential as I believe they exist in the US. YES, in theory you can use private insurance or pay up front for private treatment in such places, but very few of us have private insurance and, just as elsewhere in the world, up front payment of the £1k or so a WEEK that these places charge is just impossible for all but the super rich. In fact most beds in private units are occupied by exactly the same sort of people who are in the NHS units that do exist - very sick individuals, usually with low weight anorexia nervosa, being funded by the NHS.

I believe that all the beds in the country are currently full - a dire situation indeed which does leave families like Nelly's struggling on their own with, or in your case Nelly, probably better off without, the help of outpatient teams.

It truly does suck, but then again everything about ED sucks - it is a vile illness and treatment options world wide are inadequate.

But your daughter has one advantage Nelly - YOU. You may not be able to lock all the food away. That may not be the most helpful option for your d in the long run anyway. You may not be able to get her an inpatient bed but you are open to the option and working with what services you have to continue to explore options. You are one heroic mother - well done and keep on loving, caring, trying and keeping on
Fiona Marcella UK
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Sotired
So you can't use the mental health act there to enforce treatment?how odd that they would expect her to agree to it.its like that here too in NZ,I think it's so weird that they even require input from people who are too sick to know what is good for them.we sat there in nzs only public residential treatment place and just said to the guy if she wasn't taken there she would be out on the street as I was too broken to deal with it.and we certainly couldn't pay the $3000 a week that the two private places charge.
I am so sorry nelly.is there any respite care you can get?from friends if not through the system?when my d was still at home I paid a friend to look after my d one morning a week.she was arty like my d so she would bring some arty things they could do together.this meant I had two and a half hours to myself which was amazing.if not a friend,a nursing student maybe?my friend didn't ask for payment but it made me feel easier in myself knowing that we were in a way helping each other.my thoughts are with you,
Sotired42
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