Refused the right to stay with my son

All about caring
1

Refused the right to stay with my son. Hi everyone, I’m in a bad situation, my 24-year-old son has autism, he is nonverbal and suffers from anxiety and other mental health problems. He has the mental age of a toddler. He was admitted to hospital because of breathing issues, they wouldn’t let me stay with him despite the fact he cannot speak or even understand why he is there. He is severely distressed and can’t calm down so he’s been sedated but soon gets distressed again, he has no idea what is happening to him and I feel powerless. In all the years he has never been away from me or my wife. Has anyone else been through something like this? There should always be an exception to the rule. I’m so stressed over it. I’ve ordered lanyards and organized relevant paperwork to hopefully prove to them how much he needs a carer with him at all times, I can’t think of anything else to do.

2

Take a look at the above article and maybe contact the PALS team at the hospital where your son is. In theory they are supposed to allow you to accompany him although they could claim that they don’t have to since the guidance hasn’t actually been changed yet, but I definitely think it’s worth a try.

Best of luck, I really hope the PALS team will be able to help you.
Sally

3

Thank you so much.

4

Hi Derek

What an awful situation it still unbelievable this is still happening to families.
https://community.autism.org.uk/f
You could also post a thread on the above. Which could be also useful.
Are you a member of a carers group in your area. If not I suggest you join as you will gain support and help.

PALS is the right place to start.

If I were you and given it’s the weekend still. I would send an email to your local Mayor and MP. I have done this several times and had great responses. I’ve had replies over the weekend. So I know email are read. Find out the CEO of the hospital and copy them in.

5

Hi Sunny, thank you for the links and the advice.

6

Oh Derek, I do feel for you and your son.

I understand that every hospital now has to employ Specialist learning Difficulties Nurses whose job is to work solely with people with LD and their families. My ex neighbour told me this as she does this job herself in our large regional hospital. She contacts families before the patient is admitted, is there when they arrive and ensures that their stay is the best it can be.

I think the PALS service varies from place to place but you could start with them or go straight to the top with the Chief Executive or the Matron. Fingers crossed for you. Keep us posted.

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Hi Derek,

I would be beside myself in your situation and S would be too.

We had a previous poster on here (Erolly) who got great support via PALS and the LD champion/nurse in the hospital. I really hope they see sense and allow you to be with your son. In the meantime, keep ringing for updates, chase the LD nurse and fill out and send in a hospital passport (Sunnydisposition posted a link to one) and anything your son uses to help him communicate / understand what is going on.

Keep us updated.

Melly1

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Thanks everyone for the advice and help. I’ve printed off a hospital passport and filled it in via pen, I’m not so good with typing. Do you think it will be enough to get the ball rolling? I’ve been on the phone to PALS. Ideally, I would like to stay with him 24/7 whilst he is in hospital. Has anyone else had success staying overnight with a loved one by using a hospital passport?

9

Derek,

great that you have printed off the passport and completed it. Get a copy of it if you can. The passport should help the staff understand your son’s needs better. It won’t however guarantee you being able to see/stay with your son. Have you managed to speak with the Learning disability nurse/champion at the hospital yet? They are the key to getting visiting/staying with your son sorted.

Melly1