What happens now?

[lamacorn]

I've had an eating disorder for decades. I've never spoken to anyone about it and always denied it whenever asked.

I can't go on like this. I finally found the courage to say something. Or rather write something down.

I downloaded one of those ED questionnaires and filled it in. I then emailed it to my GP. I couldn't even face speaking to her, just sent it to her without saying anything else.

I had a call Monday and GP asked me some questions and I found it very hard to get the words out to answer. She said she would refer me to the local ED service.

What happens now? Anyone been through this and know?

I should probably have asked her but I find this impossible to talk about so clammed up.

[lamacorn]

No one?

[TheDaydreamBelievers]

Hi @lamacorn - it depends a little on which part of the country you are in. Some of these have specialist eating disorder services, some see people affected by ED's in their main adult mental health service. Both of these will have professionals with lots of experience of working with people who are affected by an eating disorder.

These services will usually invite you to an assessment session where they will try to learn more about how your mental health is, what other things are going on for you, and will consider what professionals you would most benefit from seeing.

They might for example think youd benefit from some psychological therapy that is specifically for eating disorders. There might be other bits which mean you would benefit from medication, in which case you might also see psychiatry.

[lamacorn]

Thank you daydreambelievers.
They have a specialised Ed service here.

I think that's where the referral will go to.

What if the service won't take me? What if they say it's been going on too long so they can't help?

So confused.

[BoomyBooms]

Similar position op, I had an ed for 15 y ears before diagnosis and treatment with specialist team. What happens next is likely to be a long wait to actually start treatment, prepare yourself for that. Actual treatment for me was weekly appointments with homework. It was the hardest but best thing I have ever done. You have to be brutally honest with yourself and your therapist/nurse, work at it, trust the process. Treatment saved my life, in multiple ways. I hope you can one day look back and say the same.

Oh and a huge huge huge well done for admitting that you have a problem and asking for help! That's huge!!

[BoomyBooms]

Oh I did also have medication too, it really helped them and still does because I was able to understand I had both anorexia and depression.

[MedSchoolRat]

They never give up on people, OP. tbh, there are people who get services for 30+ yrs. The ED service still tries to help them. They won't tell you what to do. They will help you set goals and help you achieve those goals.

They have to do a risk assessment. Sounds to me like will probably grade your referral as routine which used to mean 4 weeks until first treatment - if targets are not suspended which they may be due to C-crisis. They should let you know within 10 days when you can expect to see someone.

Sorry it won't be quick. You've got to see this situation as turning a big boat around, doesn't happen quick. If you can muster courage, there are a lot of self-help groups online, in meantime.

[TheDaydreamBelievers]

Absolutely @lamacorn - no one will say it's been too long, they will just be so impressed you made the first step in getting referred and keen to start helping you as soon as the wait list allows

[lamacorn]

Thank you everyone

Medschoolrat. How do they do a risk assessment with out meeting/speaking to me? Or does the GP do that??

Boomybooms. Sorry to hear it has affected you too. Will it be a nurse from the GP surgery or from the ED service?

I do have a lot more questions.

Do I need to phone the GP back or will they contact me?

[BoomyBooms]

For me once the referral was made, everything was handled by the ed service. My assessment was with a psychiatrist and my treatment was with a specialist mental health nurse. She was brilliant.

You know, I bet the ed service wouldn't mind if you called them and asked them to talk you through their specific processes. They understand the anxiety and how terrifying treatment is.

Just to be clear, you don't have anything to be ashamed of.

[lamacorn]

Boomyboom. Thank you.

I don't even know if my GP has made the referral yet. Besides I had to send her an email I couldn't speak to her about it so no chance of phoning random strangers and asking them.

I don't want medication. I've just spent the last year trying out strong meds for axial spondyloarthritis. Failed every single one due to horrific side effects. I tried 18 different kinds. I can't do any medication or any more drug experiments. Too painful and draining. The last resort were Nortriptyline and I had a full on allergic reaction with blistering rashes and racing heart. Blisters took 2 weeks to heal.

I think I've changed my mind. I've left a message for my GP to ring me back. I'm going to ask her not to make the referral. If all they have are drugs and a nurse. It will be just like the rheumatology dept where they push you to keep trying meds even thought it has made you really sick. Can't go through that again. After the allergic reaction, I promised my husband I wouldn't try anything else. It's been huge burden for the family.

[BoomyBooms]

Please don't change your mind based off what strangers on the internet say! Treatment is so much more than drugs and a nurse. If you don't want drugs they won't make you. My nurse was an ed specialist mental health nurse and she took me through a structured evidence-based programme of treatment with tools I could learn and specific techniques I could use. I felt so heard and understood and I learned things about the illness I was so surprised to learn but made so much sense. I felt like she could read my mind at times!

[lamacorn]

Thanks boomybooms.

I honestly don't know how I'd actually talk to anyone about this.

I spoke to my GP. She said she hadn't made the referral as I need to be booked in for a blood test and an ecg so they could triage me and something about a risk assessment.

She booked me in for the blood test and ecg in two weeks time and then said she was away then until September so nothing would happen for the next month anyway.

So that was that really.

[TheDaydreamBelievers]

@lamacorn - I really hope you will be able to keep the referral going. After a referral is made, the ED service will contact you.

As @BoomyBooms said, it wont be just drugs, they will have access to psychological and other therapies that are proven to work for people with an eating disorder. Nurses in mental health services are not like they are in other services - they know about physical health too but are more like a lind of therapist.

If you feel you cannot speak, you could honestly go to the first appointment with your thoughts and feelings written out, or write back and forth to the mental health professional on a bit of paper.

With the risk assessment - an ED service will be concerned about the risk through your mental health (so for example if you ever have suicidal thoughts) but then also the risk to your physical health (as eating disorders are very straining for the body). The ECG and blood tests will check part of this for them - the ECG checks if your heart is working well, the bloods check your hormone and vitamin levels.

[TheDaydreamBelievers]

More like a *kind of therapist

[Yankathebear]

Wait and see what happens @lamacorn
You don’t have to take medication if it’s not right for you. There’s plenty of other treatments available.
You’ve done the hardest bit by filling in the form and sending it.

[lamacorn]

@TheDaydreamBelievers there won't be an appointment as such as GP said it would likely be video call. I wouldn't be able to do that. DH works from home now so I've no where private to make a call like that.
And I wouldn't be able to give them something I'd written down.
All the services out here do phone or video. The last rheumatology appointment I had was video call and it was totally hopeless trying to talk to someone about a problem which is in your hip area via a laptop. DH walked twice while I was on, DC walked in and the nanny so no privacy anywhere.

And I still had to leave work to drive home to do it and then drive back to work after. Wasted nearly half a day talking to someone who ultimately couldn't help or make the assessment because they were not in the same room as me.

@Yankathebear thank you.

This is impossible isn't it.

[TumbleBingQuack]

You've taken a fantastic first step in contacting the GP. It's entirely normal for someone to ask for help, then think they can't deal with it and change their mind. If you've been the same way for such a long time it can feel "safer" to stay that way, rather than accept that seeking help might make you change. It might help to remember what it was that got you to the point of wanting to make that change.

If you're worried about privacy with the video call, could you sit in the car / drive to somewhere that no one could overhear you?

[lamacorn]

@TumbleBingQuack I'd have to drive somewhere and do it. Otherwise there'd be no privacy anywhere. Not ideal.

I honestly don't think I can do this. Perhaps the local Ed service should be deploying its resources to those they actually have a chance of helping instead

[TumbleBingQuack]

Could you maybe promise yourself that you'll do "x" appointments? You'll get through the first three and if you don't want to carry on you don't have to?

If it helps, my sister had an ED for a long time. She only started to get better once she actively engaged with the treatment, and she's so so glad she did. She (and her whole life) are completely unrecognisable from what she was and she's so happy now.

It's OK for you to not want to feel like this any more, and it's ok for you to make accommodations to ensure you get the help you need. It's also OK to feel terrified - it's a huge step and you're used to feeling like you're entirely in control.

[Cet73]

Hi there, Please please keep going on this path. I know first hand how scary it is. For me it came very out of the blue a couple of years aged 45yr. I had suffered with low mood issues in the past but the primary cause of that was when out 5yr was diagnosed with chronic health condition which continues has and continues to dominate our lives ten yrs on. I was holding it all in I realise now, until my work boss made it clear they could no longer be as flexible, allowing attend medical meetings extra for my daughter, so I quit my job. And BOOM... Unexpectedly within a wk of leaving work I had started to have a breakdown and it became quite serious in a short time. But mh services at the time, although tried to offer me some support (and I was already on some medication) it was poorly handled and I ended up feeling like they considered me not that severe (even after a failed small OD.. Which I'd never ever done before... But just felt so down and desperate). So soon discharged from them and i then overnight stsrted to control my eating. Even managed to hide from husband for first few mths as I also have IBS and I said it was that. But I had a fantastic gp at the time who picked up on my weight loss and as you said, I had the ecg and bloods prior to a referral to our local ED specialist unit in Hampshire. I ended up getting assessed quite quickly as one of my blood results was wrong and a concern. A psychologist and ED specialist did the assessment (prepare for loads of questionnaires) and I was weighed... (why is that so daunting) but they diagnosed AN. I didn't believe it start with. I mean never had signs of it before. Ever. But it felt helpful in supportive way to have had the diagnosis. Being prepared for a longish wait is right though. I guess mine wasn't too bad, about 3mth from assessment to first session with therapist. They have a range of different professionals with a different basis for their therapy. I think they match you according to your assessment conclusions. It is worth it. Don't go on kind of denying yourself help you really need. Just having the validation of a diagnosis was a big help. It's a hard Rd working to recovery. I don't know if it will be appointments remotely by video as the pandemic goes on. Take care and let us know what you do. Don't give up. You ARE worth it. Kcx

[lamacorn]

@TumbleBingQuack that's an idea.
Part of the issue is that i don't want to put myself through this if they are unlikely to be able to actually help me.

It has been going on for 35 years. At times it's been extremely bad and probably very obvious but I've always denied it.

I can't really see how they can help after all this time and because it find it impossible to talk about as well. My GP wanted to talk to me about my weight and I simply couldn't answer her.

@Cet73 thank you. I'm glad they were able to help you.

How were you able to answer all of the questions? I can't get the words out.

[lamacorn]

Thanks for all the information and kind words so far. You can always rely on MN! 💕

I wonder if anyone else has experience of ED treatment after many years of untreated ED and also treatment as an adult later on/in middle age??

Keen to hear from anyone who does.

Ideally like to know what they were able to offer as treatment etc and how much it helped.

Also and this is slightly outing. Anyone had treatment recently in Kent?

If you had treatment in Kent how long did you have to wait etc.

[lamacorn]

Oh and I forgot to ask. Anyone had private treatment?

If I could ever muster the courage to tell DH we have insurance/could pay for it.

Any private ED treatment recommendations please?
Thank you.

[TheOrigBrave]

It was a matter of weeks from my first GP referral to my initial assessment with the ED team.
That was with the ED nurse and a general MH nurse.
From there I saw a psychiatrist within another couple of weeks and the ED nurse every 1 or 2 weeks for a period of 2 years. The latter part of that 2 year period I also saw a psychologist within the ED team.

My second referral was a bit more round the houses to start with (I changed GP practice during this process), but once I referred to the ED team I saw them for my initial assessment this March. That was with a psychologist and dietician. Then lockdown happened and there was a bit of a gap - nothing too long, but they'd told me they'd contact me within a week and obv didn't.
Since April I've had fortnightly sessions via zoom with the psychologist. Alongside this I have monthly bloods taken.

It's scary and you need to be honest with yourself and with them, but they don't push, just give you a space to open up and find a way to work together that suits you. This can take MANY tries.

Good luck OP, you deserve to be free of this.

[lamacorn]

@TheOrigBrave thank you. That's very informative and useful.

I don't want to pry but do you think it's helping you? Have things improved for you?

I struggle to see how I can make video calls work. DH works from home now and then there are the DC so I am literally never alone when I'm in the house. Last time my GP rang me I tried to hide in the bathroom and the DC and the cat still followed me.

Someone else here suggested driving somewhere in my car to do a zoom call.
Do you think that would work? It would be pretty weird wouldn't it?
Nowhere at work as it's small premises so that's a no go.

At any rate GP hasn't made the referral
Yet due to needing ecg and bloods and then she's on holiday for 2 weeks so it will be ages before the referral is even made.