Experiences of inpatient eating disorder units and transfer from hospital

[sum12luv]

My son is 25 and currently under Section (Section 2) in a general hospital. He is receiving nasogastric feeding because the medical professionals fear there is a high risk of refeeding syndrome if his nutrition is not managed carefully. He has bulimia nervosa.

A place has been arranged for him to begin inpatient treatment at an ED unit 80 miles from where we live. The admission is scheduled to take place on Thursday. I feel this will be a hospital transfer, and my son will have little say in whether he goes to the unit or not.

Does anyone have any experience of being an inpatient on an ED unit that they would be willing to share? Did it help? What was it like?

Thanks

I'm a lot older than your son. But spent seven months in an adult ED inpatient unit a couple of years ago, as I have anorexia.
It was an intense experience and it felt quite brutal at times, but it did save my life.
I was a voluntary patient, but I know I would have been sectioned if I'd tried to leave, I saw that happen to other patients.
At first they take all control away from you. I wasn't tube fed, so it was three meals and three snacks every day at the same times. Initially they start you on small portions and check your blood daily as there is a risk of refeeding syndrome. There were three tables in the kitchen and you start at supervised and work your way up to having more independence around food when they see weight gain, and you sticking to the plan. Bathrooms were locked day and night initially and some patients had one to one support.

There was supervision after every meal. And we'd do that in the lounge, but again they were strict, no sleeping, no crossing legs, both feet on the ground. They wanted you to sit with how you were feeling. Some patients would do crafts, listen to music. I found supervision hard as I'd often feel very full after eating.

There was individual and group therapy. But if I'm honest I didn't find either particularly helpful. There was also ward round every week with the psychiatrist and the rest of the team there. They would discuss your progress and often allow you more freedom if there had been weight gain.

I was put on antipsychotics while in hospital and they helped with some of the ED thoughts. I still remain on them now.

I was unable to keep myself safe and weight restore at home, so hospital was where I needed to be. It's a hard experience but lifesaving too. I can't say I'm completely fixed, but I've managed to maintain my weight since discharge, so it did help me.
Happy to answer any other questions, if you have them.

@Punxsutawney thank you. This is very similar to the experience I had when I was treated for an ED over 40 years ago. Like you say, it saved my life, but the real recovery began when my life began to take shape and I was in enough control to use positive coping mechanisms to help control the urges to restrict or binge/purge.

It should make him put weight on. But often people just put it on so they can leave and then they go back to their old ways.

If he's on section 2 presumably they need to see progress within the 28 days or he's at risk of a 3.

You have your own room and the day is packed full of activities and eating.

I hope it helps him and his weight gets healthier. X

Yes I think real recovery happens after the refeeding. I too had anorexia as a child and young teen and was shocked at a relapse in my late forties. This was my first hospital admission and I don't plan on having a second!

I hope that the admission gets your son to a place where he can continue his recovery at home. Eating disorders are so complex and sometimes the only way forward is inpatient care.

Sounds like ED units haven't changed much in 40 years. It's interesting the genetic link that eating disorders have too. My son has ARFID. I was also in hospital with a young person whose Mum and Grandmother had both suffered from anorexia.

@Punxsutawney Yes, I knew nothing of the genetic link until recently. In some ways having experience of the disorder and its treatment can help us to empathise with our loved ones and certainly can make us very careful to avoid the negative judgements and comments we may have experienced when there was less understanding about EDs. In other ways, at least for me, going through this with my son has made me revisit some unpleasant memories of a past that I thought I had moved away from decades ago.

@BillieWiper Yes, certainly when I was being treated for the ED (there were no specialist ED units in those days), a very Behaviourist model was followed: bedrest, earn back 'privileges' through weight gain, sit in chair, sit on ward, work way to weekend leave etc, and wonderful 'Largatyl' the cure all medication in psychiatric hospitals in the 70s and 80s. I had some very unpleasant experiences, but then, my behaviour was incredibly challenging.

I do not share the negative experiences with my son, because his stay may be very different, and he may benefit from it in ways that I could not have at that time in those circumstances. However, I think the fundamental work of rebuilding, or in my son's case, building, ones life begins when the ED unit ends.

My son was supposed to be transferred to an eating disorder unit today. However, there was a miscommunication with transport, so now he will not be able to go until Tuesday. He is intubated (NG tube) in hospital and the hospital will not let him take solids primarily because they fear he will make himself vomit (and they do not have the resources to deal with this). He has a one to one MH nurse with him. He has been on the tube for a week now and will be on it for another five days, until he is transferred to the unit on Tuesday.

I feel he is on the NG tube because it is easier for the hospital to manage and not because he cannot eat or drink (oral fluids are also severely restricted). I see him every day (I am fortunate to have very flexible employment) and he is really distressed. The tube irritates his asthma and gives him nose bleeds.

I just feel this treatment is questionable.

Poor love. It sounds very difficult for him. Whilst it is distressing, I imagine it is somewhat of a relief that he’s keeping the NG in, and getting fed and not making himself vomit. I hope he is able to hear words of reassurance. ❤️

Re the ng tube, my DD was tube fed for 8 1/2 months as an inpatient. At one point there was discussion around her being released home with the tube but I felt this was the wrong message and pushed for continued impatient stay until she could eat.
She has asthma and the tube was fine. Your ds might need a smaller tube fitting if it's irritating his airways.
I really feel for you and your ds and everyone on this thread.
My DD was an impatient for 10 months and recovery continued with a strict meal plan at home for a good while after.
She never engaged with the therapies. Refeeding /food was her medicine and the only thing that saved her.
I wish you both all the best. Recovery is definitely possible, never lose hope.

Thank you. I can see things from the hospital's perspective as well. My son's main coping mechanism has been B and P, and this behaviour would be very difficult to manage on a medical ward. Furthermore, the ED unit have already called my son to discuss his food preferences and sensitivities, so it makes sense that the introduction to solids and a meal plan will take place at the unit.

Just an update. My son was transferred to the eating disorder unit today, He has eaten and has someone with him. I think he will be closely monitored for 10 days. He is the only male patient on the unit.

I have been invited to an online carers' support group and I am preparing to visit on Saturday. Unfortunately, I cannot make any week day evening visits due to transport difficulties (I don't drive and the unit is about 100 miles away). They use the CBT E approach.

That is excellent news. I hope your ds settles in ok. It sounds as if they’re going to take very good care of him. And Saturday is only a few days away. 😊

The staff on the unit fear my son may be experiencing some symptoms of 'refeeding' syndrome. His phosphates are very low and he is breathless and finding it hard to focus. Currently, they are checking his bloods (every three hours) and giving him oral phosphates. He is under the care of the medical staff on the unit.

My son's health anxiety has escalated, and I have had long telephone and text conversations, usually to try to allay his fears (and stop him from worrying himself through Internet searches).

Is RF syndrome common in the early stages of treatment? (It was never mentioned when I was hospitalised many decades ago)

Your ds is in the right place and they picked this up very quickly by the sound of it. I can understand why this has increased his anxiety. I think all you can do is reassure him they know what is best and he’s in safe hands.

As for what they will do next, I’m figuring they may slow down his feeding schedule whilst his body adjusts and they rebalance his electrolytes.

My knowledge of ED is limited. I looked it up as I know the medical profession has known about it for decades. It was given a name of refeeding syndrome in 1981.

@Mummyoflittledragon Thank you. I was relieved to hear that he has had a much more positive reading this morning, so the supplements must be working. As you state, it is so important that he is somewhere that can identify and treat these symptoms quickly.

Yes, I think the dangers of refeeding have been known for millennia, but no-one ever mentioned it in the hospital settings that I was in.. However, that might have been because I was mainly treated on acute psychiatric wards rather than specialised ED units.

That must be a relief. And you’ll be seeing him tomorrow. Not long now for you both.

Yes, I know the dangers have been known for a long time, and studied after WWII, but I thought it best not to say that to a worried mum!

As for not mentioning it to you, perhaps it is because information was a lot less readily disseminated, and it was much more on a need to know. Doctors take a great deal more time to explain stuff to us. And of course we have doctor google.

@Punxsutawneywhy weren’t you allowed to cross your legs?

I think the 'honeymoon' period on the ED unit has worn off a little. My son has been sending me texts presenting his case for discharge as soon as possible, a return home and to disengage with the ED team. According to his reasoning, he needs to find some work or purposeful occupation, engage in some study, re-join the gym and find some social groups and he will be fine. He states that he does not have a 'serious' eating disorder, and that most of his problems were cause by social isolation and lack of occupation.

It all sounds very logical and admirable, but, in my opinion, it shows his desperation to leave and possibly poor insight into his condition.

He does have a serious eating disorder. Indeed, it was the ED that has prevented him from achieving many of the things that he states are his goals. For example, he gave up jobs and apprenticeships because he could not bear to eat at work or because he could not fit the gym into his working day (he spent hours at the gym). The ED keeps him locked down into routines and socially isolated. As for home, well, I think home will be seen as a high risk factor when discharge is considered. I think semi-independent living close to home may be the best solution when he leaves the unit. There are many reasons for this.

So, I am texting back, advising him to take one day at a time, trying to distract him, guiding him to talk to the staff about certain things. At least he is complying.

Bless him. This is just him wanting to run away, isn’t it? When he finally wants to work towards recovery, it sounds as though he will be a force to be reckoned with.

@notatinydancer Both feet had to be flat on the floor. I think it was because they really wanted us to sit with our discomfort when we were in supervision. They do take control of everything initially. Very hard when you're an adult to have so much control taken away from you.

@sum12luv I think that kind of push back against it all is quite normal. The eating disorder voice will be so loud as it's being challenged continually. He is where he needs to be right now and I'm sure your messages are helping him. It's a good idea for him to talk to staff if he feels able to. Some of the staff on my unit were excellent at encouraging me and being a listening ear when I was really struggling.
I hope your visit with him tomorrow goes okay.

@sum12luv How did it go on Saturday?

@Mummyoflittledragon thank you for asking. The journey was interesting because a major football match was being played at Wembley and there were sober fans going down to the unit and very drunk fans on the way back.

The staff were very welcoming. There was a high level of security, including locked toilets, but that was to be expected. We sat in the garden and talked. He wants to come out and work with teams in the community at home to manage recovery. I am sure he feels really committed and has the best intention, but I think there is little likelihood of that working.

His section ends in in a week or so, so we have been talking about how he can put his case and feelings across in the review meeting, yet still make sure that the teams understand he will stay and he will commit to the programme if his 'plan' is deemed too risky. He has an IMHA who will attend the review with him.

I think 'home' is very high risk for my son. There is just me and him, and my son needed to control the environment and everything in it. Added to that. I do not see how I could realistically supervise his meal plan and post meal activities, when, in all honesty, we have not actually eaten meals together for years. There are other factors that I am sure would make relapse very likely.

I would like a social worker to be involved from the earliest outset. The SW could help to find supported accommodation for my son, close to where I live. Then I can offer moral and emotional support, but the practical support he needs could be delivered by a team of people in the community. He also needs work, to complete his education and all sorts of things. I have not said this to anyone else, but the context is important to consider.

I think he is settling and being realistic. He had painted his nails, which was a novelty. and he painted mine as well.

Sorry about the ramble.

I hope your journey was comfortable then. There was also the Arsenal rally in London on Saturday.

Bless him. He’s really in denial, isn’t he? I agree you can’t have your ds home and it’s great he will have someone to advocate for him. Hopefully they will keep him longer.

Do you think it will be voluntary unless he insists on leaving? I hope you can get a SW on board. Idk how this all works, but I’m wondering if you may have to refuse to have him home to get the help you’re looking for.