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

Why weren’t you allowed to cross your legs?

I went to see my son again on Saturday. He is getting very frustrated. He has a review meeting tomorrow, and I am attending online. The meeting is quite important because his 28 day section may end on Friday. He is scared that a section 3 (for up to 6 months) may be suggested.

His fear is that, although he has gained weight, he has been 'caught' exercising (pacing in his bedroom) again. The staff are also concerned about his mental health because he has broken down in groups. My own opinion is that he can no longer mask his feelings. The compulsive exercise, I feel, will take some time to manage, but he has agreed to participate in a programme designed to help people understand this behaviour and develop some strategies (LEAP)

I helped him gather ideas to put on a pre-review form on Saturday. Whilst we were discussing 'objectives' , my son said that he felt very 'different' from most of the people on the unit, and that he felt the unit was not the right place for him.

He went on to say that most of the other service-users had a 'home' and a family network. They also had university or work or something else to go back to. However, he had nothing (in his opinion). Living with me is seen as high risk due to my son's excessive need to control the environment and the fact that I probably could not provide the structure and practical support he may need upon discharge (e.g. meal planning, supervision etc). This is largely due to my work and caring commitments and perhaps my own atypical eating patterns.

Other family support is not strong. His father/my husband is in a care home (schizophrenia and autism) and his brother is very vulnerable and lives in supported accommodation (same profile as his father). My son also has no employment and never completed formal education. So, I think he has a valid point with respect to the need to focus on the environmental factors that could support or deter recovery.

My son thinks that either he will be discharged back to 'nothing' or he will have to wait until accommodation, occupation etc are put in place. This could mean a risk of relapse or a prolonged stay on what is quite a restrictive unit. Both my husband and my elder son had prolonged stays in hospital/ delayed discharge due to difficulties finding appropriate post-discharge accommodation and support.

I encouraged my son to speak about these fears to staff, and I will also raise the concerns in the meeting on Wednesday. His psychiatrist said she would get in touch with a social worker, but so far, we have heard nothing. I think the social worker needs to be involved from the earliest point, so that context planning can be part of an incentive to work with the programme.

As discussed in previous posts and by previous posters, the main part of 'recovery' takes place when the individual has left the unit. The recovery also requires holistic change and this is especially so in my son's case.

Wow you certainly have a lot going on. Idk what to say. But it sounds as if he needs to stay there for a fair while still. And if he can no longer mask his feelings, it’s a good thing, isn’t it?

As for being in the wrong place, I’m figuring your ds doesn’t have a choice. And how much of that is the ED talking? Ie to push him to leave. Because if he really is able to recover, he will hopefully be able to find work and / or get some qualifications. So arguably if he is capable of working at some stage in the future, he has the rest of his life to get back to.

Some people who purge (vomit) whose BMI is under 18.5 are just seen by some as suffering from bulimia nervosa when they actually have anorexia nervosa binge purge type because they was underweight when diagnosed.
Recovery from anorexia or bulimia may look a bit different.
Motivation comes from within and I was in an inpatient unit at 21 and after got the motivation for what to do for life and it helped to have a motivation to do something else for several years.
Going into recovery within the first few years is the best thing you can do for a better chance of recovery. I wish your son the best.

@Justmerach This is very interesting. I have been sent my son's care plan ahead of the review this morning. His working diagnosis is AN - sub-type binge-purge. I had suspected this, due to the similarities of his presentation to my own previous ED.

It was another very positive review on Wednesday. My son has continued to gain weight, and there are no obvious ED behaviours. He seems to have stopped the pacing in his room, and can do 15 minutes of yoga three times a week with one hour of independent 'leave' (walk in the town for example) each day. There is also three hours of leave with me when I visit at the weekend. He is also completing his therapies and classes (DBT and LEAP (about gaining insight into compulsive exercise).

The estimated discharge date is still set for August, and it is likely that he will be discharged 'home' (back to living with me). Home would be a 'stepping stone' until more independent accommodation could be arranged, but to be honest, the prospect of my son returning scares me.

He has made terrific progress over the five weeks that he has been away. Yet, largely this is because he is very strongly motivated to comply with the regime, and to gain privileges and eventual discharge. Nothing at home has changed. Furthermore, the memory of his absolute control over the environment, and to some extent over my movements is still raw. One part of me feels very happy that my son will soon be out of the unit, and that he is already thinking about the voluntary work he can do and support groups he can join. The other part of me wonders how I can stop the ED creeping/rushing back in once the structure and incentives of the unit have gone. One reason that my ED lasted so long is because nothing in my environment changed.

There is a carers support group meeting in two weeks' time, and members of the team from the unit attend this. I wonder whether I should mention my fears and ask for guidance about how to minimise the risk of relapse and control, or whether raising this may be an obstacle to his discharge.

It is really good news that your ds is complying. I totally understand your reticence and being wary that as his environment won’t have changed, things won’t change. And there being a risk of him going backwards, especially if you think he is just complying to get out of there.

As I said I don’t have experience of in patient. However I absolutely would be discussing the package they are offering for him. And I would be asking questions like what happens if you refuse to have him home. And explain why home life is do difficult. The control issues.

I would also say that you don’t think going home is in his best interest. And asking what they recommend to change that if they think home is so good for him. And what steps will they take and guarantees that if he goes back backwards, they will take him back into the unit.

They aren’t going to make your life easy, so don’t make it easy for them. That’s my take.

And if you do have your ds home, maybe think of ways that would change things. Would redecorating his room help for example.

My son is coming home today. He decided, earlier this week, that he no longer wishes to be on the unit, and he wants to come 'home'. He discussed this with several members of staff and, because he has full mental capacity, and his BMI means he is not at significant clinical risk, the review meeting yesterday focused on discharge.

The risks were explained. I voiced all my reservations (the context of control, his obsession with the environment, my own disordered eating, his lack of protective factors (e.g. job, family/informal network of support, other purposeful occupation apart from exercise, support for his other unmet complex needs and my caring/work responsibilities). These were noted.

He presented his case well: he will come home, search for voluntary work or paid work, join clubs (he has a list that he is interested in) and he will stick to a meal plan- just like he did on the unit.

He will come home ostensibly for four days. However, if nothing terrible happens, he will be discharged on Monday via video conference. I will not be able to take part in the conference because they could not meet at a time that did not clash with my work commitments. If he did return (if things went very wrong) they would try another return to home later.

I will do my best to support my son and help him with his aims. I think the return will be difficult for him as well. He is going from a very structured environment with a team of people on hand 24/7 to something that is almost the opposite. I have made some changes to the environment that he will have to accept and, we will try to do some fun things together, work and caring commitments considered.

Wow 4 days doesn’t see long. I hope everything is going ok and that you can maintain boundaries with him. It’s going to be very hard for you too. I can’t lie. In your position I’d be very concerned.

So far, it is chaotic. It is about as far removed from the intense structure of the ED unit as one can get. He arrived home and, despite my advice, launched into cleaning the house from top to bottom. He could not bear to eat in the house (associated it with sectioning, the old B and P behaviours and so on), so he went to a garden centre for his main meal (he wanted something prepared for him (but not by me :)). He managed this. We shopped for some other food items. He went on a long walk, partly with me.

Yesterday, it was more dashing about. We decided to cut out the meal out, but he spent ages trying to choose something from a shop. I reminded him of the meal plan, but he said he could not bear to eat at 'home'. (I don't eat more than one meal a day - Ex ED- and perhaps this does not help).=] We got something. He worried that there was not enough protein in the meal, so we bought some cold chicken. We went to see my mother who was being discharged from hospital. We met his brother (who lives in town and has additional needs). He ate sweets and ice cream with his brother and this really messed up his plan. He had ten biscuits at home but I threatened to tell the ED unit if he purged so he just cried and scratched the back of his neck. We went for a short walk before bed. He seems to be in a state of panic most of the time.

On the positive side, he has not purged and he has faced a lot of new situations. On the other side, he needs so much more support than I can provide. We sat down together and drew up a more structured meal plan. I have this in my bag, so I can remind him of it when meal times come around.

I hope the next two days calm down a bit.

Thet does sound chaotic and some red flags. The biscuit binge and the long walk. There are, however, some very good positives if you can keep nudging him. The meal plan, not purging, ordering food. And he’s really not in a place at all to advocate or look after himself if he is struggling to take food off supermarket shelves.

Imo you do need to tell the unit about the binging and struggling to stick to meal plan as well as the OCD traits he’s manifesting, including the cleaning and scratching himself. From what you’ve told me, I am wondering if your ds is going to completely gloss over this. So If you don’t say something, he risks not getting the level of support needed.

i understand you have work commitments. Just by how things have been, I would urge you to do whatever you can to be there for the meeting.

If you dropped down dead at work they’d replace you. That is the reality. Can you can talk to your boss / work about the importance of this? You could perhaps find a free room at the office and just step away from work for the duration. Perhaps pitch it as short term inconvenience for (hopefully) a longer term positive result.

I get it’s hard. So much is tied up in this, your stress levels and work performance as well as your ds’s long term health.

As for the meal plan, stick a copy of it on the fridge. Is your ds doing a food diary? IMO they should be asking him to fill something out. Better still if that includes how he’s feeling.

This is something basic to get him started if not. You can just print out.

https://www.cci.health.wa.gov.au/~/media/CCI/Mental-Health-Professionals/Eating-Disorders/Eating-Disorders---Worksheets/Eating-Disorders-Worksheet---03---Self-Monitoring-Form.pdf

There are so many resources online. Page 64 gives an example. Idk if he’s ever engaged with this stuff as it is really interesting and useful. I can’t imagine my dd doing so.

www.cpft.nhs.uk/download.cfm?doc=docm93jijm4n6244.pdf&ver=8819

@sum12luv is Ds on any medication? I got put on the antipsychotic Olanzapine when in hospital and I continue to take it now. I've found it really useful for calming my mind and ED thoughts.

@Mummyoflittledragon thank you for the resources. They will be really helpful. My son is battling, and it is hard to manage, but so far we have had another successful day in terms of getting through with no restriction or purging. @Punxsutawney no, my son is on no medication. I think he really needs it. Today we went for a trip out to the local city. He became very agitated trying to choose something to eat. We spent a very long time in the shop and he was distressed. Medication may be something he can discuss (and I can follow up or pre-empt by e-mail) at the meeting on Monday.

He had plans and intentions to do so much, but I think the battle with ED thoughts and against ED behaviours is the priority for the moment.

You’re welcome.

I think your ds needs to be planning a lot more. Unfortunately it’s a full time job to help someone, who is so poorly, which I know you understand.

Perhaps you could help on a practical level for some stuff. Your ds’s anxiety will lessen if he checks online menus and decides where he will eat and what before he goes out.

And if there is anything he can predict, visualise or rehearse, it could be useful. It sounds as if he needs a lot of scaffolding when he leaves home. I imagine he will need some successes in the world before he’s able to attempt volunteering.

You are here to gain support for your son and you have mentioned this yourself sum12luv. I don't know if you have spoken about this to your son how he feels about your own situation with food. You have written that you eat one meal a day. With me I have had a past of being diagnosed with anorexia. I have found it difficult to be around others family who were not eating when I had to eat.
You have been doing a lot to care for son. I don't know if there is any improvement there with your diet that could be made and you could do this together to get to a better place for both of you eventually.