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

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cjac16
Just want to see what others think.  My d was diagnosed with AN five years ago.  Had "treatment" through CAMHS which was appalling (six different therapists etc within a two year period).  However, she was weight restored and signed off from CAMHS.  We had a short period where things were good but then d's AN mutated into BN.  She did a day care programme for about five months and again we got our girl back (despite her being the only BN patient amongst a group of AN patients).  Things were fine for a while and she saw her consultant every two to four weeks for about 15 minutes (apparently this is good service for the NHS!).  Anyway, my father died earlier this year and two nights before his funeral my d decided try to kill herself.  This led to her being put under the care of the Crisis team.  She is now in a better place and the Crisis team have handed her over to her care coordinator.  I am getting so frustrated with the whole system.  She is supposed to see her care coordinator every other week but this does not see to be happening.  Last appointment was canceled as care coordinator had a clash!  Also supposed to be seeing her consultant every two weeks.  He canceled his last appointment as he was ill so it will be a five week gap since the last appointment.  We have also been seeing the family therapist with whom we have learnt to draw pictures of each other without looking at the page or taking the pencil off the paper and built beautiful lego models!.  Not once has she brought the eating disorder up and when we had a meeting with the consultant and therapist to see what they could do for us, the therapist actually said she hadn't realised we were there for help with the eating disorder!!  Consultant has also asked what exactly they can do for d.  I have said that we are still waiting for one to one therapy to which he said he would take this back to the team and see what they could offer.  Now, am I mad or is this the most appalling service?!  I did say to the care coordinator recently how fed up I was with this service and that I was actually thinking of going to the press and our local MP (who happens to be our ex PM) and that is when she said that we were actually getting a good service!  What are others' experiences and am I just being irrational?
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Aggie
cjac16
I'm sorry to hear you are having such a tough time with CAHMS. It really does seem to be a lottery, depending on where you are and the people involved in the services.
My d was referred in Dec 2016 and we have had involvement with several tiers - general, CITT ( Community Intensive Therapy Team and EDOS (Tier 4 Eating Disorder Outreach Service). It was clear she needed intensive help at the outset and was quickly referred from the general team to The CITT team with support from a specialist nurse for her and initially another for me, a consultant, family therapy and eventually a psychologist. At one point she was having two visits a week plus seeing the consultant on a regular basis which continued for probably about a year and a half. The team started losing staff and sadly my d's nurse left, it fell apart from there. The person who took over saw her once in 6 weeks, asked her if there was anything she wanted talk about and when she said no (which she always did because Ed won't let her talk about things) she chatted about nothing for her hour and that was that - she made moves immediately to transfer her back to general CAMHS even though weeks earlier we had ended up in A&E and had an overnight stay in hospital due to a SH incident and she was clearly in a really bad place. Family therapy was pointless for us too, though we never had to do Lego!!

We did have to bring things back on track due to lack of communication at one point as everyone had 'forgotten' about the Ed and were focusing on social anxiety for some reason, but we were lucky that the psychologist she was seeing was determined to help her and worked relentlessly with her.  They made some good progress, but that has now been withdrawn as whilst we are inching forwards at home, my d won't engage with therapy at all, he has literally tried everything and thinks she needs a break after 3 years. They haven't discharged her, but we are effectively going it alone for the time being.

So, even though in the main we have mostly had a good experience, that has been down to the gritty determination of some really fantastic people in the team rather than the service itself. It is desperately understaffed and under funded and they are losing good people as a result.
I hope you can find the help you need to get your daughter back on track x
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Enn

cjac, 
I don't think you are being irrational. I am a firm believer in communicating when things are not going well. I wonder if you can sit down with the manager of all these services and spell out in writing. I also am a firm believer in documenting, documenting , documenting so that everyone at the end of the day understands their roles and responsibilities. 
I would take a witness as well to summarize the outcomes .Have your issues documented well. 
I have found that if I spell out clearly what I expect and discuss it with them openly, that we can come to an agreement that works for most if not all. 

I think the hardest part about getting help for our kids' Eds is understanding the system then navigating it so that we get where we need to be. At the beginning we are so vulnerable and we don' t know what is supposed to happen. I When we are at their mercy and think they will do what they are supposed to and then they don't- MAN that is awful. 

I would sit down with that care coordinator again and have a clear plan for the future. I am sorry it is so awful. 
In times of need we need the services to support us not hinder!

Sending a hug.

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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cjac16
Thanks for your responses.  Glad to know it is not just me who is fed up.  D has moved from CAMHS as she is now 19.  We too had the consultant saying that he wanted to deal with the depression first during which time the BN had a field day.  Had tried to get all the team together but it is actually easier to find a needle in a haystack.  I am trying to contact d's care coordinator but since she cancelled the last appointment I have been unable to even though I have rung repeatedly.  My d actually wants one to one therapy but it is just not forthcoming.  Thankfully d has signed a letter saying I can talk to all involved regarding her treatment - just seems pretty impossible to see them to talk to let alone help d.  We are managing to keep her on an even keel at home but I am just so frustrated by this so called service.  
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ValentinaGermania
Are you able to call Dr. Sonia Bues and ask for help with tay-FBT (for 18-25 years old) and pay that privatly?
Keep feeding. There is light at the end of the tunnel.
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cjac16
ValentinaGermania - thank you for that suggestion.  Looks like she is a five or ten minute drive from us actually.  Have you used her personally?  Would be good to get somebody on recommendation.
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ValentinaGermania
I am in contact with her for about 2 years now and have not used her personally (my d was weight restorated when I got to know her and we had a FBT therapist here in Germany to get started with) but I have send a lot of families there since then and they saw great progress.
If she is THAT near that is a sign 😁...go and get to know her and then you can decide if that fits for you or not. You have nothing to lose...🙂
Keep feeding. There is light at the end of the tunnel.
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