Adult eating disorders support

[thesootherfairy]

Hi
Was inspired by the teen thread. Looks really supportive and was wondering if anyone else would like an adult support thread?

I'm 47. Have young pre-teen DC, a DH and a family cat. I work full time self employed. But I've had anorexia since I was 12. Had no help (not well known about back then so no help offered). Recently been diagnosed with anorexia.

Now face a 2 year wait for treatment.

And you?

How long are you away for? I think holidays can be really difficult, especially because you're supposed to be having a lovely time, but I know I have been on holidays where I feel like I'm having to work so hard just to manage myself, my eating, my emotions. Is there any way to add some structure in so that things are more manageable?

I'm also struggling with weight gain that I hate. I hit my lowest ever weight earlier this year, and I know it's stupid, but I feel like I worked so hard for it and now I've just gained it all back. I feel like I've just thrown all that hard work away. My rational mind is telling me that I needed to gain the weight, that my body couldn't function at the weight that I reached, but the eating disorder sees the current number and I feel like a failure.

Sorry I realise that became a bit self indulgent - not the intention but just trying to say I think I can relate and am still very much in the midst of things, so don't have much in the way of advice!

I've wanted to come back here and post for a while but it's hard to know what to say.

After the horrible NHS experience, I got referred to Priory (paying via health ins).
This was in may. Since then I've had to chase the Priory around. They've been absolutely useless.

It took them 3 months to get the assessment with psychiatrist organised.
They couldn't organise anyone local so said they had one 3 hours drive away. I live in SE and there are three Priory hospitals less than 30mins from me. But no. It had to be 3 hours drive ie 6 hours round trip.
Eventually they agreed it could be done via phone.
He's referred me for therapy for 40 sessions plus 10 sessions with him and 10 with dietician.
But he referred me to a therapist 3 hours drive away.
When he made a follow up call to me 6 weeks later I still hadn't heard from dietician, therapist or anyone.
And another 3 weeks on, no one has contacted me.
Literally no one gives a shit.

I have given up. It took 37 phone calls to the Prior Corporate Health insurance in house team just to organise the assessment. They kept forgetting to ring me. Forgetting to make the appointment. Couldn't find anyone. Etc etc.

It's never going to happen. I have no words and I no longer want to talk to anyone.

I can't bear supposed "help" places like BEAT. It's full of stories of all these success who got help and had therapists/treatment teams who cared. No one gives a shiny shit about me.

When the psychiatrist rang for the follow up and because it was all done via phone, he clearly couldn't remember anything about me and kept going off on the wrong track and couldn't recall what he was supposed to have organised or with whom or anything. I cried for 2 hours after that call. It was so utterly bleak.
Those websites are also full of "just ask for help. It's available" no it sodding isn't. Even if willing to pay for it I can't find anyone who is willing to do so.

I can't recommend Priory that's for sure. They are completely useless. My health ins don't pay for anyone else and there are no local private adult providers near me either.

It's unbearable. Thing were so much better before I asked for help. Shouldn't have bothered.
No advice to anyone else posting here. I don't have anything positive to say either.

I'm so sorry @thesootherfairy.

I think at the very least you should be under CMHT, with a Care Coordinator - can you ask for a referral to secondary care from your GP if this hasn't already happened?

Are you on any medication? There might be some meds that can help. I'm sorry it's all so hard.

Hi @Rustnot thank you.
CMHT wouldn't accept me as in this area ED is a separately commissioned service and as I have an ED, CMHT are not insured to look after me as they are not commissioned to do so. ED service discharged me as you all know as per upthread and primarily because they don't actually have anything for anyone over 25 years of age. So there's nothing.

Tried two different medications from GP. Had two allergic reactions. Last one landed me in A&E in the middle of the night so been told it's far too risky to try anything else as the outcome is likely to be the same again.

Private was my last Hope and that's completely failed. Priory are supposed to be all singing all dancing and they literally can't even organise themselves to make a phone call. Much less organise care. They are shockingly bad.

It's the end of the line and I accept there isn't going to be any care or treatment for me. I felt much better before I said anything to anyone. Wish I had stuck to that. Think the lesson is if you're aged over 30, don't bother as there isn't anything available. It will just be years of stress and disappointment

I know it isn't the same thing and you shouldn't have to use them as an alternative to professional help, but there are lots of recovery communities on social media etc that you might find helpful.

Can you get back in touch with the Priory, or better still have someone else do it for you, to see what is happening? They referred you for treatment so it is there, its just being organised in a really shit way.

@thesootherfairy

Hi *@Rustnot* thank you. CMHT wouldn't accept me as in this area ED is a separately commissioned service and as I have an ED, CMHT are not insured to look after me as they are not commissioned to do so. ED service discharged me as you all know as per upthread and primarily because they don't actually have anything for anyone over 25 years of age. So there's nothing.

Tried two different medications from GP. Had two allergic reactions. Last one landed me in A&E in the middle of the night so been told it's far too risky to try anything else as the outcome is likely to be the same again.

Private was my last Hope and that's completely failed. Priory are supposed to be all singing all dancing and they literally can't even organise themselves to make a phone call. Much less organise care. They are shockingly bad.

It's the end of the line and I accept there isn't going to be any care or treatment for me. I felt much better before I said anything to anyone. Wish I had stuck to that. Think the lesson is if you're aged over 30, don't bother as there isn't anything available. It will just be years of stress and disappointment

Are there NICE guidelines you can take back to your GP? Can you remind us why you were discharged by NHS services?

@TheOrigRights my GP has been on at the ED service. My GP has been amazing. She's written several complaints and she's written to CCG to complain as well on my behalf. She even wrote to the Priory to ask why they were delaying and not getting on with offering the treatment the health insurance had agreed to pay for.

Essentially the only treatment available for someone my age at the local
ED service was a clinical trial.
I was only offered this clinical trial and was told it was this or nothing.
This clinical trial wasn't helpful and it wasn't NICE approved or recommended.
Both my GP and I asked about other treatment and the therapist and service manager became very defensive and said I didn't fit the criteria of the trial and that they had nothing else on offer.
They also said while I suffer from anorexia I also suffer from depression which they don't treat. So they discharged me.
CMTH won't see me because they're a separately commissioned service that don't deal with those suffering from EDs.

My GP tried to apply for funding from CCG for me to have suitable treatment elsewhere. CCG rejected it because they commission and fund a local ED service. The fact that this service won't treat me despite acknowledging that I suffer from an ED apparently doesn't matter.

I can't even obtain paid for treatment. I've been messed around for over a year now. It's been awful.

Asking for help and being messed around and rejected and given a little bit of therapy which ripped up gaping wounds has left me unable to cope and in a terrible state.

If I hadn't asked, it would have been fine.

If you have a diagnosis of depression, then CMHT could see you for that and if you had a care plan put in place things might start to move forwards for you? If you were allocated a care co they could start to do some of the hard work in chasing people up, and let you focus on your recovery. It might be a long shot but I think it's worth asking your GP about

Hi @Rustnot this is the ridiculous loop I've been stuck in for over a year.
CMTH want the ED treated first as a priority before they will accept me for depression treatment.
As I can't get the ED treated. I get nothing.

It is because two different trusts operate the two services and they both aim to palm people off on each other so they don't have to spend their budget treating them. GP told me this. She said they are all crap out here.

Not very reassuring. And not any use to me. And I think it is shameful they are allowed to carry on like this using tax payers money (I am one of those tax payers....). And that all health care professionals out here know it and it is openly done.

In desperation, I rang Health insurance co and I cried at this woman for an hour about the whole saga. As in not the NHS bit but the Priory saga.

She says their deal with Priory means I should have started my therapy 2 months ago. She wasn't pleased to hear I still had nothing organised.
She has organised a local dietician outside priory. Hopefully this one will accept me.
She wants to organise a local therapist but needs the health insurance psychiatric nurses to read the psychiatrist report and find someone appropriate. And they are now trying to organise a different psychiatrist outside of priory.

I don't know yet whether this will get me anywhere. I've made 30 odd phone calls to the Priory corporate team over the last 4 months. I've chased them constantly to try and get them to do their job but have failed to get anywhere. It's exhausting.

Last week was so bad I couldn't even bear phoning my gp to talk to her. I would have just cried and that gets me nowhere.

and said I didn't fit the criteria of the trial and that they had nothing else on offer.

Did you have a standard ED assessment when referred by your GP?
Have you seen their assessment and your discharge letter?

@TheOrigRights yes I had a standard assessment

Well standard for covid anyway as it was over the phone.

Yes I have a copy of their discharge letter.
It said they don't really have anything else other than the trial for my age range and that they want my depression treated first (and an asd assessment).

Why did you ask?

@TheOrigRights the assessment yes and no. I have a copy of what they sent to my GP after the assessment with the diagnosis.

Is that what you mean?

Sorry - I didn't mean to sound like I was prying. It just all seems so bizarre; you cannot be the only person to be in this catch22 of not being able to access ED treatment because you have depression.
Most ED services have psychiatrists as part of the team.

It sounds like you have explored every possible avenue and if there is nothing the GP can do. I really hope the service improves in your area.

@TheOrigRights
Exactly. It's a catch 22. Circular argument.

I don't know what to do.

It very much feels like no one wants to treat me because Im 48 years old and it's not worth bothering with as life is over anyway. It's clearly not worth it.

@thesootherfairy have you made any progress with The Priory?

@TheOrigRights how are things since you've got back from holiday?

Thank you for asking Rust

I am feeling much more in control. I'm not sure if that is a good thing, but I feel more stable with it. With DS back at school I can go back to my classes at the sports centre as well.

I think if I can stay like this it's fine. Not ideal, but acceptable.

How are you doing?

I'm doing ok thanks....bit up and down but purging less so that is something. Work is very busy so that is a good distraction.

Glad you are feeling better :)

Hi everyone and @Rustnot
No progress whatsoever.

It's awful. The psychiatrist had gone on holiday again and forgot to find a therapist. Or organise anything at all. He now can't find anyone. I think that's useless.

I have contacted my GP to ask for help as I honestly don't know what to do.

I do hope everyone else is doing better than I am.

sooth is your GP at least doing your obs?

Hi everyone
@TheOrigRights @Rustnot

I've finally made progress. I complained to the medical ins co.

I now have a therapist! And a dietician!

I have to stick with the psychiatrist from priory as no one else was available.

I have an appointment with the new therapist next week. So nervous 😬

I am also on waiting list with a second therapist for CBT for depression to be done next year once the ED treatment has made some progress.

My GP has been monitoring and helping me. Don't know where I would be without my GP. It's the first good GP I've had but so brilliant. I've learned how important a good GP. It's everything really.

I don't know whether this will work or help. Am keeping absolutely everything crossed for now.

You've done so well persevering through all of this! I hope the appointment goes well next week. When will you get to see the dietician?

@Rustnot
Thank you.
It has taken a monumental amount of effort to get to this point. I'm scared of failing at this treatment.

I am seeing dietician in 2 weeks time. I've been given a food diary to fill in.

I hope it all goes well.

Rustnot. Are you getting anywhere? You mention purging less?

@TheOrigRights would you consider more treatment? Or do you feel you're sort of on your way to recovery?

It's strange after all this effort I'm still just at the bottom of this treatment mountain I now need to climb.

Yes I'm doing ok thanks. Purging about once a week and my weight is stable. I'm sort of using exercise to compensate instead though, so I'm trying to be mindful of that and discussed that in therapy this week. I'm finding it a bit frustrating that the ED has morphed into something a bit different. I'm also very aware that I have been at this point before where I thought things were improving but I was exercising a lot, then got an injury and then things spiralled completely, and I ended up on an acute psych ward for a month. That was also a lot to do with mood, but I think my injury and the inability to exercise triggered the meltdown. I don't want to get caught out in the same way again. I think it's really hard with exercise. My rational brain knows that purging is not good for my body at all, but exercise is part of a healthy lifestyle, so I think it's hard to strike a balance. I am definitely in a better place than 6 months ago, when I was on the verge of another hospital admission. I have also started some new medication, which I'm hoping is also going to help.

I have my fingers crossed for you for next week, please let us know how you get on.

Hi @Rustnot
Glad to hear things are stable and you're having therapy.

I'm sorry to hear about your hospital admission. It sounds very hard.

I hope you're able to keep going with the therapy. Is it private or NHS? Hope you're find it useful.

I've had so many false dawns here and now I'm scared I'm going to fail at therapy. So nervous about next week.

Am finding the food diary hard. It's hard to have to be so honest and it stirs up the ED.