What are my rights? ED treatment
 

I saw my psychiatrist today to find out if the eating disorder team would see me for my binge eating disorder. Basically the answer was no, because they only have the provisions to deal with those suffering from Anorexia and who are underweight. I don't know why, if it's a money issue or something else.

When I asked my psychiatrist if I could have any treatment at all for the BED she said that my psychotherapist jumped in and said I had to discuss it in the psychotherapy group I am a member of.

I have been a member of the group for a year. It does not help me. Every week the other members talk about their problems through which I sit and listen and try to offer my help. It is extremely hard to jump in and talk about yourself. It's not like you can come with an agenda of things to talk about, you kind of have to talk about what comes up as a result of other people talking. So when I can actually get it in I talk about my BED. I have so far received no support. The other members have no experience of it, and have only offered the usual suggestions of try going for a walk when you want to binge etc. The psychotherapist who leads the group does not do much talking at all, she certainly doesn't offer us any therapy, she asks occasional questions. So I got extremely angry when I found out that she just expects me to bring it back to the group WHERE I GET NO SUPPORT. I frequently go home from the group feeling ten times worse.

I told my psychiatrist that I was going to leave the group next week because I was sick of it and sick of the psychotherapist stopping me from accessing any other help.

When I got home I rang PALS and said that I was suffering from BED but also with anorexic thoughts and that I was being denied help for my eating disorder because I am currently overweight. The guy was really nice and said that he felt I should be receiving some form of support for it and he said he would take my case further.

Do I have a right to be treated for my eating disorder? Is it wrong for the ED team to discriminate based on BMI? Why should I have to be underweight before they agree to help me?

I don't have the money to go private. I've already looked into Mind and they don't offer ED services in my area and they charge for counselling.

Hi, I don't know a great deal about eating disorders but I would have thought that people suffering from Anorexia and Binge eating disorder should be able to be referred to the eating disorder team. Both disorders have an impact on a persons health so it doesn't seem right that they only see patients with Anorexia. Perhaps you could get some clarification on this when you next see your psychiatrist.

The psychotherapy group that you described sounds very similar to the young persons psychotherapy group that I went to for 6 months. I found the group very difficult. There were 2 facilitators but they very rarely said anything. I think I struggled because there was no structure to the group we were just expected to start talking. For many months I just listened and hardly said a word. When I got more comfortable with the other members of the group I felt able to offer some advice and talk about things that were going on in my life. As the months passed we all got used to each other and the group flowed much more easily. I wouldn't have really called it therapy because it was basically a group of young people chatting with each other. I did manage to complete the 6 months but it was difficult and I had many times when I wanted to drop out. How long are you supposed to do the group for? I think if 1:1 therapy was offered in conjunction with the psychotherapy group it might be more helpful.

I think you should keep on at your psychiatrist and say you really want help with your eating disorder.

Have you thought about going to your GP and asking to see a dietitian? I know that it would be more focused on a pratical aspect, but in the interim of trying to find more intensive support, it could be helpful...

Also, I 'm not sure about the services in your area, but where I live there is a team called the specalist weight management clinic. You'd have to meet certain criteria thoguh, I think the bmi threshold is lowered if you have secondary health problems from your weight. Although, I don't think they are too strict on this as my psychiatrist had said they had been in the clinic to publicize there service as many people on psychotropic meds have problems with weight.

They have a specalist dietitan in the team, a clinical psychologist and two other professionals. I can't remember which. But if you asked your GP to refer you to the dietitan, I'm sure if the dietitan felt your needs were too complicated they would try and refer you to the appropriate services (i.e one thing the specalist weight management service helps with is when emotions are intertwined with eating behaviours).

I think going to your GP might be the best option for now.

Hope you manage to find some support!

razorbladekisses the length of time in the group is usually 2 years, so I am half way through. I never felt like it was right for me from the beginning but I wanted to give it a good go. I think a year is long enough to know it's not working. It's as you described- just a bunch of people sitting in a circle talking. It's hardly therapy. A couple of the other members are also frustrated at the lack of structure but the therapist doesn't do anything about it.

Cedrus I saw my GP about a year ago and mentioned my weight. I didn't specifically mention the BED, I just asked if I could get any help with weight loss and he said my best bet was to join weight watchers as in his opinion they get the best results. I have joined weight watchers and I lost a little bit of weight but have since regained it. I asked about seeing a dietician and he said no because it was only for people who have medical problems like renal failure etc who need specialist diets. But I might go back and see a different GP and ask specifically about help for the eating disorder.

What's frustrating is that on the website for the mental health services under the eating disorder team it says they DO see patients with bulimia and BED and that they offer a special form of CBT. So I don't know why the psychiatrist said they don't offer anything. Maybe they used to and stopped.

I think you should go back and see a different GP. Tell them you are struggling with your weight, have tried different groups/diets and that the medication you are on complicates it. They shouldn't deny you even just going for an assessment with a dietitian and then the specalist can decipher whether their help is appropriate or not.

Do you know if you can get 1-1 therapy or CBT in general for your mental health?

I have made an appointment to see a different GP on Thursday.

I will ask about 1:1 therapy. I saw a psychologist a couple of years ago but that was limited to about 12 weeks.

I was also recently discharged from my care co-ordinator so it makes it really hard to access support. This was another idea of my psychotherapists. I feel that I still need to be under the care of my CMHT and have a care co-ordinator that I can ring or see when I need to. It was changed so that the psychotherapist and psychiatrist were in charge of my care and that if I felt unwell I had to talk about it in the group or ring the psychotherapist who tells me to talk about it in the group.

I hope it goes well on Thursday!

I just wanted to add, when I saw a dietitian recently (i had seen a different one last year but due to ending up IP it was paused and she had left) she suggested referring me to eating disorders (i have issues with purging) but I asked for the weight management service as that was suggested before. I was told I don't quite meet the criteria but have an assessment with them. Seeing a dietitan initially might be a way to get to the ED service...possibly.

Could you write a letter or speak to them about why you feel having a CC is appropriate. Did they give you the choice or just made the decision and informed you?

Thanks. Hopefully they will agree to let me see a dietician as I have an ED and not 'just' overweight.

I will think about speaking to them again about getting a care co-ordinator. When I was first told that I was being discharged I became very unwell and went into hospital for 2 nights. After that the CMHT decided that I still needed their help and I got to keep my CC. Then six months later they decided that I should just have the psychotherapy with no other input and they discharged me. I didn't get any choice.

It's really sad that someone like you who really wants the help isn't being able to access it. I think asking you GP for a referral to a dietician is a really good idea. As someone else said it might be the first step in accessing specific help and support for BED.

Is there a certain criteria that a person has to meet in order to have a care coordinator?

I hope the appointment on Thursday goes well.

hi, im sorry about your situation, can you go to a different gp and ask them to refer you to ed services, or maybe phone the local one up and ask what the referal criteria is and explain your situation. have you tried a support group for people with bed. sorry if these are not helpful. i think it really is such a pain how you have been treated, but i really would persist thats what i had to do.
take care lotty

^ I think what lottybear suggested is a good idea. Beat run support groups for people with eating disorders all over the country. I have been to a few and found them really helpful. And I know that so people there suffered from BED.

Also if the trust website says that the ED service accepts bulimics binge eaters then you need to flag this up with PALS and make a case for a referral.

I don't know if there's any criteria about having a CC. I know that they told me they didn't want me to become dependant on the services which was why they discharged me, but there's a difference between needing services and being dependent on them when you don't need them. I am still self harming, depressed etc so I would say that I do need them still.

I've looked into support groups locally and beat don't run any where I live. Mind run an ED group somewhere that would take me 1 hour to get to and even then on their website it says you have to live in that area to be able to go and I don't.

I am seeing my GP thursday so I will ask about a referral to the dietician.

I will try and contact PALS again

what about asking your GP for help and see what she/he says

Just a quick update- the guy from PALS rang me back and said that when he spoke to the ED team they said they would consider a referral from my psychiatrist, so fingers crossed that will be done soon.

I am still seeing my GP tomorrow to see if I can see a dietician.

Great wiork Sarah well done!

Thanks :)

That's brilliant. :)

I was supposed to go to my psychotherapy group today and tell them I was leaving, but ironically the binge I had on Monday combined with the milk I had this morning finally reared its ugly head and I had an IBS attack and could not leave the house. I rang my therapist and explained, and I have to go back in September for my final session (the group is on the summer break now).

Thanks Katie (you are Katie?)

Just wanted to say thanks for sharing this - it's really encouraging to hear that PALs can be helpful with referrals. Good luck with it.

Im thrilled PALS have had some success and I really hope that they take you on.

Just to say Eating Disorder provisions really suck and are limited so they may require people to be at a certain level of illness before they would take you on but they should give you an alternative if they can't help.

Anyway hopefully PALs will help but in the meantime Im wondering if you've tried any self help books some of the ones around binging by dr Christopher Fairburn are good.