Asking for child to be discharged (nhs)?

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Choco88

I’d love some advice please. My son has SEN and he’s always had trouble sleeping. We’re under the sleep team and I don’t find them helpful in the slightest. I’ve done everything they’ve asked sleep courses, weighted blankets etc. He’s been prodded and poked during sleep studies. His OT thinks it might be a sensory thing (he has a sensory processing disorder).

Would I be unreasonable to ask them to discharge him? I dread the monthly check ins, I find the nurses really condescending. They want to redo the sleep study which I’m really reluctant to do as it’s so distressing for him being away from home and his usual routine.
 
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H

Happy35

I don’t think that’s unreasonable at all, if you don’t think this is beneficial to him or you and it is causing distress then I think that is a sensible thing to do. I would be aware though that if sleep issues continue and you have withdrawn there may be limited other help with this available, a friend who has a son with autism has been prescribed melatonin to help with sleep is this available for your son?
 
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Choco88

Happy35 said:
I don’t think that’s unreasonable at all, if you don’t think this is beneficial to him or you and it is causing distress then I think that is a sensible thing to do. I would be aware though that if sleep issues continue and you have withdrawn there may be limited other help with this available, a friend who has a son with autism has been prescribed melatonin to help with sleep is this available for your son?
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melatonin doesn’t work for him unfortunately as it only helps you to fall asleep and his problem is staying asleep. I know it sounds silly but I was worried that they might report me for being a bad mum for discharging him.
 
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Tui

Tui

I think if you said what you said in your post about how you don’t think it’s beneficial for him etc I don’t see why it would be an issue.
 
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Keikochan

Keikochan

Choco88 said:
I’d love some advice please. My son has SEN and he’s always had trouble sleeping. We’re under the sleep team and I don’t find them helpful in the slightest. I’ve done everything they’ve asked sleep courses, weighted blankets etc. He’s been prodded and poked during sleep studies. His OT thinks it might be a sensory thing (he has a sensory processing disorder).

Would I be unreasonable to ask them to discharge him? I dread the monthly check ins, I find the nurses really condescending. They want to redo the sleep study which I’m really reluctant to do as it’s so distressing for him being away from home and his usual routine.
Click to expand...
I feel like before you take him out of the clinic, you should speak with a main doctor on the team and tell them all of what you have said here. Tell them you don't find this helpful bc it is not helping at all. You have done everything they have told you to and it has not made any difference or has made things worse (if it has).
Ask them straight out if they think it's a sensory processing disorder, what are they going to do to treat that? Your son is a patient going through something he shouldn't be, he is not a test guenie pig (sp?) to be poked and prodded for research studies.
Also tell them how the nurses are really condescending and give examples of this.

You've prob read everything online already but just incase, this seems to be a list of advice/info:
 
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C

Choco88

Keikochan said:
I feel like before you take him out of the clinic, you should speak with a main doctor on the team and tell them all of what you have said here. Tell them you don't find this helpful bc it is not helping at all. You have done everything they have told you to and it has not made any difference or has made things worse (if it has).
Ask them straight out if they think it's a sensory processing disorder, what are they going to do to treat that? Your son is a patient going through something he shouldn't be, he is not a test guenie pig (sp?) to be poked and prodded for research studies.
Also tell them how the nurses are really condescending and give examples of this.

You've prob read everything online already but just incase, this seems to be a list of advice/info:
Click to expand...
thank you I appreciate your reply. I think I’m going to put everything I’ve said in an email and send it over to the head of the sleep team.
 
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childofthe70s

childofthe70s

I used to work an organisation called Sleep Scotland https://sleepscotland.org/ - they have some good advice on their website. They have trained sleep counsellors outwith Scotland so maybe able to connect you with someone locally. Good luck.
 
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