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mbond69

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Reply with quote  #1 
My daughter has recently been admitted to a tier 4 hospital . I am so shocked by what I ve seen and heard there I am barely able to process it .Staff screaming and swearing at patients right in front of me . It seems no tactic are off limits in the effort to get them to eat - I half expect them to start water boarding soon . My daughter has lost of 2 kg in the week she’s been there and has gone from being sane and bubbly to a jibbering wreck who looks like she might loose her mind . She is an informal patient but I am terrified of her being sectioned .She is eating hardly anything orally She had been on an ng tube for a while before admission attending a day unit which followed a sort of family based approach . She had done quite well and reached goal weight and maintained weight but had a relapse just b fire Christmas and the idea was to use a tier 4 stay as a way of getting off the tube . I think I have made the most terrible mistake . I tried all day to contact somebody but couldn’t get through . Nobody ever answers the phone . I think she needs nutrition urgently but their policy with ng feeding is to reinsert after every meal - given the pain I’ve seen my daughter go through with ng insertion this seems barbaric . Can I just take her out? I am frightened to complain as I fear I will make things worse .
Foodsupport_AUS

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Reply with quote  #2 
Welcome to the forum, sorry that you have had to find your way here. Hopefully some will come along with some ideas for you about care in the UK, although my understanding is that choices are very limited. You don’t mention where you are. Given your D had gone backwards and was having NGfeeding as an outpatient, is there a reason it was decided she should become an inpatient?
Screaming and swearing at patients does sound very inappropriate, since it is likely that things are worse when no adult is around. On the other hand NG feeding is done different ways in different units. Insertion after each missed meal gives encouragement to complete the meal, which is harder if a tube is in already. If she was s not eating it sounds as though NG feeding is what is required.

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
tina72

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Reply with quote  #3 
Hi and a very warm welcome from Germany,
I hope that there will sign in someone from UK soon to help you.
It sounds not good what you write. If she has lost 2 kg in a week there it seems not to be working either. If she is an "informal" patient (I don´t really know what that means legally) it sounds as if you should be able to take her out, but if she refuses food totally she should get a nasal tube again. Can you just take her out and bring her to ER somewhere else?
Tina72
seaglass

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Reply with quote  #4 
Hi, that all sounds so worrying. As far as I understand it an informal patient has the right to be asked to be discharged. They could though (and I’m hoping to be corrected if I’m wrong) assess her first and section her if her health or safety is deemed at risk. As a parent if you have serious concerns or a complaint about the inpatient care you can get in touch with an independent advisory service who will help guide you through what to do. Ask at the hospital and they should be able to tell you who to contact.
If she’s lost 2kg there in a week and her mental state is deteriorating alarm bells would be ringing for me.
I’m in the UK and get so frustrated when CAHMS misunderstand the need to deal with ed by being firm. For me that means firm
Compassion and not shouting or shrieking. Where in the UK are you so we can help you find out your options?
If I was you and was getting no reply to phone calls to voice my concern I would go down and insist on speaking to someone in charge about the care your d is receiving and how they can let her lose so much weight.

I’m hoping others with experience of inpatient UK care will reply with more advice. I hope you get answers soon
mjkz

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Reply with quote  #5 
If she is an informal patient, you might be able to her from the hospital.  However, she was given a bed in the UK which is pretty rare so they must think she wasn't doing as well as you are implying.  If she was NG dependent and still is, then she needs more than day program.  How a hospital handles NG tubes can be individual but if she is there to get off the tube then it makes sense that they remove it between meals and snacks.  NG tubes are not comfortable and maybe knowing that they will keep putting it in will help your daughter take a step forward in eating to avoid having the NG tube.

What you saw was not appropriate so I would report it immediately to the nursing staff, the risks officer, anyone you can report it too.  You also could use this opportunity to help your daughter break her dependence on the tube.  She obviously has to regain the weight she has lost and keep eating.  Removing her from the hospital may end up in a section especially if she is going backwards so it is something to keep in mind.  Can you work with her to come up with a plan to get her off the tube so that she can come home?  When my daughter had a tube and couldn't come home until she was off of it, she and I and her team came up with a gradual plan of what she would eat-something at each meal and snack even if it was a supplement to break her dependence on the tube.  She hated having it put in and taken out so quite honestly the discomfort really helped motivate her to try harder.  We gradually built it up to where she was going one meal without the tube, then one snack and meal, etc.

You may be stuck with the situation now. If you haven't witnessed the incidents but hear it from your daughter, I would take it with a grain of salt.  My daughter would tell me anything to try to get me to let her come home.  I would report anything witnessed and not be too hasty in pulling her out.  This could be the only chance you have of getting her off the tube.  As I have said before, the worst place can help someone who is ready and the best can't help someone who is not.  Every place is going to have its good points and bad so you may have to just work with the place you are at.  Whenever my daughter would complain about something she hated where she was, I'd turn that back to her and say "So what do you need to do to get out of here?  What can you do to get yourself out of here and back home?"
mid73

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Reply with quote  #6 
Really sorry to hear that this is the approach being taken. This was not our experience of tier 4 at a private UK unit ( most patients nhs funded). The staff were compassionate and patient but very clear that compliance with the meal plan within time limits was what was required. The unit did not do ng tubes and as such obviouisly did not accept patients who require this in the first instance. However my d was well aware that if patients consistently could not manage to eat what was required they would be transferred to a unit that could tube feed.

I think as said previously you need to speak to the clinician in charge about your concerns. Losing 2kg is not acceptable.

Best Wishes
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