ED referral experiences (adult)

[groovejet]

I started a thread in the summer when I was anxious about approaching GP for support, but wanted to start a separate thread to share my experiences so far of being referred and having a diagnosis of an, it helps to get my thoughts out and may help others starting the same process.

I approached my GP in June, my eating had become very restrictive, despite my worries, the GP took me seriously and sent a referral to the hospital. Had some delays at this stage because he sent it without doing bloods and then the blood test appointment got cancelled.

My referral got accepted, again some delays, the first date I couldn't do, the second they had to cancel and I had my first appointment last week. So 4 months from first reaching, which given the delays the NHS have, is understandable, but the downside is that in that time my restrictions had gotten worse and my BMI continued to lower rapidly.

First appointment was with an allocated clinician lead and then with an allocated nurse, both seemed lovely and the clinician was easy to talk to, which is good as I was able to be fully transparent about my illness, it was mentally tiring though as it does force you to accept some of the realities of the situation.

After this appointment, discussing habits and having physical tests, she presents my case to the rest of the team so they decide what treatment pathway I need, so I am back next week to find out what the plan is, and what the wait time is to start that plan, and what the procedures are whilst I am waiting.

It is a scary process, but I am glad I reached out to my GP back in June when things had started to get really bad because I am not sure at the position I am in now I could physically tolerate a 4 month wait. And whilst I worry about what recovery will look like and how I will cope mentally with that, I know that I have taken so many big steps into accepting I have an eating disorder and taking the steps to start recovery.

That’s amazing OP. Well done for taking that difficult first step and I’m so glad that they have been treating you seriously.

Thank you, it has been a lot to process, I have spent so long downplaying the situation so the fact that they are taking things so seriously, is starting to make me accept some realities of the situation.

Everything about this illness is exhausting, and it feels so lonely. I think it is hard for people around me who know understand it, so even though they are well meaning their advice is not always helpful.

Well done. I am in treatment for anorexia atm so sending strength and hope!

That’s great you’re going to be given a plan. And well done for admitting to yourself and reaching out for help. These are all very important steps for taking charge of your recovery. I totally understand the frustration of well meaning people, who really don’t get how it is for you. I hope you now get the support you need.

Appointment today was quite full on, weight has still dropped despite me not being in work for a week so I could get some much needed rest.

Ended up having to see the consultant who was very direct about how serious things are for me. The plan for now is to make very small diet changes with the support of a dietician and close monitoring of bloods and weight, any more decline then they will be pushing for certainly day patient if not in patient . The goal for now is to reduce the physical risks and then think about treatment to deal with psychological side of things

Been a lot to process and as hard as it was to hear I do need to listen to the reality of this illness. I was planning on going back to work after the half term but he has said that I am to not think about work for 3 months, which will be hard, I feel guilty for being off work already and from a mental point of view it was a guaranteed 10k a day steps and that is hard to let go of.

Each day is a new day and small steps are to be celebrated.

Well done for going in. And for listening to the consultant. Your health is far more important than work. I hope you manage to make progress. Micro steps.

Well done for taking the first step.

However I’m shocked and saddened it took 4 months. My dd16 has weekly treatment and the referral took just 4 days for phone triage and 8 days for face to face assessment then the weekly therapy started immediately.

Had my second bloods and obs appointment of the week yesterday, weight hadn't dropped this time, so I didn't have to see the Consultant. I also had the first appointment with the dietitian.

The dietitian has a good sense of humour, and made me feel relaxed, which is a big plus. Some of the changes are small and seem manageable, other suggestions feel far more daunting and to to be honest, this morning they feel downright scary. So going to have a relaxed day today and focus on adding in the acceptable changes, little steps and compromises.

Can I jump on please?
My DD was diagnosed with anorexia when she was around 14. She had treatment through camhs and was discharged. She’s now 19 and she’s had a relapse, I’m calling the GP as soon as they open for an appointment but wanted to ask about the process and your experiences of eating disorder as an adult as my DD was a child when she had her treatment.
Thanks

@groovejet
How have things been? I’m pleased that you like the dietician. It can really make such a difference.

@SummerBlueskies Sorry to read about your daughter having a relapse I hope the Gp is able to help you both. I would suggest you start your own thread as to be honest, I am very early on in the process so not sure how helpful I would be. I would say that if the GP says they will do a referral ask them to do bloods first, this caused a delay in my referral process.

@Mummyoflittledragon Thank you for asking, things are ok, I have been adding in the small food changes. Some days have been mentally challenging, but I am continuing to take each day at a time. Weekly appointments at the clinic continue and another dietitian appointment in 2 weeks time.

Well done on managing these first steps @groovejet.

I’m so pleased you’re continuing to manage your care. One step at a time.

Just an update, plus it helps to write things down, things have been harder, and I have found it challenging to follow the meal plans, which has led to restricting, which affected my weight check in last week.

I have agreed to let them refer me to day patient treatment, which will mean being on a ward 10-6 during the week (not sure yet when that will start). Part of me is relieved, as it means I have no option but to follow the meal plans; I will not be resenting my DH each time he checks if I have eaten, nor will I feel guilty about lying or throwing food away. That is the logical part of my mind, the other part of my mind is dreading having to eat regular, and for me, large portions of food and the increase in weight that will go with that. The constant battle between logical and the eating disorder is exhausting.

On the positive side, I attended my DD1's graduation, which was lovely and a very proud parent moment, I had a pottery painting evening date with DH and we are visiting DD2 on Saturday and going to the little Christmas market, that is around the corner from her accommodation. These moments, whilst tiring, bring me joy and a sense of normality, and are what I need to hold on to to strive for recovery.

Well done, that takes a lot of courage 💐

Thank you, not sure about courage, several times today I was tempted to phone them to say I changed my mind. I wish I had the strength and courage to have coped better at home, but by agreeing to this, it avoids things carrying on as they are and then that will result in full inpatient, at least this means I can still have family time.

That sounds courageous to me. You have taken a positive decision about your treatment rather than waiting for it to deteriorate to the point that it is taken out of your hands.