We were referred to the community team early on and worked with them for a lot longer than we should have been but I think her nurse fought my daughters corner to keep her under their care as her anxiety level was through the roof, additional behaviours starting arising and to move her would have been detrimental, as although we were refeeding and gaining weight there was no improvement at all with anorexic thoughts, in fact the closer she got to a healthy weight, the worse they became.
During this time the community team referred her for assessment to the next tier, which is the EDOS Team, (Eating disorder outreach service) those involved in the inpatient side of things to see if a short term stay might kick start things, but it was decided she wouldn't benefit and was better at home.
Our nurse changed job in January of this year and moves were made immediately to transfer my daughter back to general CAMHS. I have to say I was terrified at the time but it has been fine.
We had a meeting with the community team in which I established exactly what would happen, I am guessing you are seeing someone once / twice a week at the moment so it's important that you know how it's going to look moving forward. The psychologicist she was seeing became her case manager and continues to see her once a week and I had already insisted on another assessment from the EDOS team which has worked in our favour because It kept them involved. It's possible that she would have been discharged by now without their involvement.
If you are concerned about independent eating being too soon bring it up with them, I know everyone recovers at different rates but you have voiced this concern for a reason and generally, in my experience, your gut feel is right. We were encouraged to let my daughter start eating lunch with her friends at school which resulted in it being discarded, a drop in weight and her having to be supervised by a teacher for a year. We have only just taken that leap of faith again now, but I feel much more confident this time that she is in the right place to manage it.
The community team are an acute intervention, meant to get things on an even keel and then hand back, don't be too hung up what part of the service it is, the important thing is that she works well with whoever she is seeing - my daughter has made more progress with the guy she sees now than she did with anyone else because he is very good.
Thanks so much for taking the time to explain your journey in such detail. The reason why I was concerned about what part of the service we were in is because, at the moment I think we are in what you refer to as the ‘community team’ – ours is called CED, and we want to stay in there. Contrary to your experience I have heard terrible things about our general CAHMs; parents say there is no support/advice around food, re-feeding, ‘holistic therapies’ to relieve anxiety and no evidence that clinicians have any experience of ED. Patients are allowed to stoop to dangerously low weights and on the brink of an admission before being transferred (after hard fought representations from parents) to CED. When parents have desperately sought advice on how to get their children to eat they have simply been advised to take them to A & E. After speaking to other parents in the same service I was beginning to worry that the CED were preparing to transfer us to general CAHMs and I wanted to arm myself with some advice from other parents before I raised my concerns. Since posting I have now received assurance from CED that there are no plans for a transfer to general CAHMs. However, they are reducing the frequency of appointments from once per week to fortnightly visits.
Well done for insisting on the continuing involvement of the EDOS team – it’s so hard having to negotiate your way through the different branches of these services. It’s good that you were able to pull things around without IP treatment. We are having the same problem with the return of violent melt downs, food throwing etc as we are hovering towards w/r
If you have a any specific questions, please ask. Good luck x