Reassurance required please

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I’ve had to bring my severely disabled brother into A&E. There isn’t anybody else who could have done this. He’s been ill for this entire year, including sepsis a couple of months ago that resulted in him being put in an induced coma.

DH is in Zurich for work. He can’t get home until tomorrow noon at the earliest. I’ve had to leave my two young DD’s (3 and 10 months) in the care of my DS. He’s 17, he’s responsible, but I’m looking at a long wait in A&E with DB so he’ll probably be caring for them overnight. My parents are away, I don’t have anybody available to look after my DD’s until around 6am tomorrow when my friend can go over. DS has never had them for this long by himself. DD2 is asleep, but DD1 is still awake. DS says they’re both fine.

DB is non verbal so won’t be able to advocate for himself if I go, plus he needs help with literally everything so he wouldn’t even be able to go to the toilet if I wasn’t here.

Would you leave a 17 year old in charge of two young kids? He’s had them for an hour or two at most by himself. I can ask for an appropriate adult for DB, but I know he’ll be stressed if I’m not here. I’m at a complete loss. We’ve already been here for 2 hours and they have just made an announcement that the current wait is 12 hours (!). DB is showing symptoms of sepsis again and I’m so worried

• [Message from MNHQ: please see the OP's update at 13:59 Sunday before responding]

You're a a wonderful sister being there for your brother like you are!💐

Agree.

Remember Martha's law when it comes to sepsis.

It might help your son (and your peace of mind) if there is another responsible adult your son can contact just in case he cant get hold of you, if he needs reassurance over the phone (this might be your DH actually!)

Try to fit your own oxygen mask too. Breathe. Best of luck.

This is really helpful, thank you. I’m just about to go back to the hospital so I’ll talk to the ward sister when I get there. I haven’t slept for 36 hours so I’m struggling to think straight. I’m terrified he’s going to get ignored and end up with bed sores, end up going hungry because nobody will feed him, or going out of his mind with boredom because he doesn’t have the dexterity to use his iPad by himself so he needs somebody to physically put on a tv show/film for him etc

I agree with the 2 messages above with the addition that the hospitak are saying that they woukd rather have a distressed patient who they are finding it difficult to treat rather than accept the presence of carers who are trained to communicate with your brother and can help and advise. I might talk to PALS now see if they can move it forward pending the hospital being able to put proper provision in place.

Sending hugs to you. You are a woman with multiple caring responsibilities which must be a huge stress. You sound incredible. For my experience, 17 year-olds can be brilliant and responsible when they need to be. I think your son will do you proud. I bet he is a credit to you.

ETA Sorry I did not read the full thread. I’m sorry your brother is so unwell. Sending lots of love still.

I generally have a heart of stone, but your post has really touched me. You are a wonderful woman, OP and have raised a brilliant son. Your love and care for your brother shines through. I really hope he gets the nhs care he deserves.

sorry if I have missed it, but I would support him with writing some kind of advanced care directive. If nothing else, just a list of things that would make his stay easier, written in the first person. And pin it up beside his bed.

Surely they should allow in his carers?? Involve PALS.

Ah I wish you and your brother all the best. I hope he gets seen quickly by medical staff. I hope they are aware he is having trouble breathing as that sounds serious.

Sorry you're having to handle all this; it must be really stressful and upsetting. Your son sounds brilliant.

Regarding the hospital asking if they can sedate your brother... I understand your concerns about that, but honestly if he's feeling really unwell and is agitated, I would have thought sedation might be more comfortable for him anyway? He'll feel calmer and he'll be sleeping or dozing most of the time, and things like injections and drips etc will be easier and less painful/distressing.

I can see why your immediate reaction is to say no, because they've framed it as making it easier for the hospital staff, but I think it would also very likely make it easier for your brother as well. I'll be honest, if someone had offered me sedation when I was a hospital patient recently, I'd actually have jumped at the chance.

Of course, though, you know your brother and his situation and I'm sure you'll make whatever decision feels best for him. I hope he'll be on the mend soon.

It’s good that the hospital is so close to your home, that will help over the coming weeks. When will you DH be home?

can I just say that you sound like the most incredible sister. Your DB is so lucky to have you. Both of my DC have SN, one very complex care needs. I find such threads very touching.

Hope your DB is better soon.

Got to the hospital. They’ve sedated him even though I said no over the phone. Had to get back in my car because I was about to lose my temper in the ward. Just screamed out loud and somebody knocked on the window to ask if I was okay. DB is obvs now asleep, DS is up there sitting with him.

I will call PALS when I’m thinking straight. I’m going to have to stay with him until they allow the carers to come in too. I just want to fucking sleep

How appalling and I think illegal surely. I’m so cross on your behalf.

@blankcanvas3right I’m a dr and the nhs have training about learning disability needs and it’s called the https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism

was he sedated because he was confused ? Or sedated because he’s ‘easier’ ?

He doesn’t have a learning disability - will this still apply? He has quadriplegic spastic cerebral palsy, but his brain is unaffected. He can’t speak though.

They’re saying he was agitated (which I can believe) and that he would be easier to treat if sedated. I asked them on the phone not to do anything until I got there (I was going to be an hour max), so that I could speak to him and see if I could calm him down. They originally wanted me to stay outside of visiting hours as they felt he would respond better if I was there, I needed to go home for a few hours to see DH and DC. I suggested his carer comes (she had offered) but they said until they got permission from the ward sister it would need to be family only outside of visiting hours.

After I’d refused sedation over the phone, I came to the hospital and found him asleep. The poor unsuspecting healthcare assistant is the one who told me he’d been sedated even though I’d insisted on the phone they wait for me. She had no idea I’d said that. DB is still asleep now, not really sure when he’ll wake up. I’m waiting for somebody to come and talk to me about what’s happened. Hope all this makes sense I’ve been awake for a very long time and I’m struggling to think.

Yes it’s still relevant. That piece of legislation and mentioning that training will make pals think holy fuck

You are doing amazingly well Op. and your son sounds like he’s the best big brother ever. It’s so hard in hospital situations but re the sedation, maybe actually he will heal more if he’s resting rather than being distressed? I understand you wanted to get there first but they probably were acting in his best interests for what they need to do to treat him. Less than ideal approach from them absolutely, but I’d try and reframe it so you can also get some well needed rest? Then, when you’re recharged , get in there and get a plan going forwards that you’re comfortable with?

Very best wishes to your brother. Well done to you for being an awesome sister.

Yeah, I think that’s what I’ll have to do. I’m glad he’s peaceful and isn’t stressed. I just have this awful image in my brain of Nurse Ratched approaching him with a huge needle whilst he’s terrified! Probably because I’m over tired. I’m going to stay here tonight and they have said now the carers can come and sit with him from tomorrow morning. I need a very large wine and to buy DS a very large present as he really has been so brilliant. He wants to stay here tonight with me to make sure I’m okay but he has a football match in the morning that he needs to play in. DD’s are at home safe with DH being spoilt rotten so I’m able to relax a bit more tonight.

I just wanted to say I've read this thread from start to finish and I'm feeling a little teary. I am sending you lots of love and support @blankcanvas3 .

Hope you manage to get some rest tonight. Your DS is an amazing boy, I hope my boys grow up to be like him. My oldest DS has severe autism; he doesn't speak, just screeches and bangs and we don't know yet about a potential learning disability as we are still on waiting list for assessment. I hope not as he does understand instructions but spends a lot of time in his own wee head and isn't present a lot, if that makes sense. He's in an ASN base (I'm Scottish) and gets good support there thankfully. He's just turned 7. Things like this really make me cry as I do worry about what will happen if he ever gets sick and we aren't here. I'm so glad your DB has you as his advocate. Sending love.x

You're incredible OP.

Sending you and your family lots of positive thoughts 💐

I have a sister with the exact same disability. It's tough but so are you all.

I am so sorry for your ongoing struggles with achieving appropriate care.
The ward are allowed to admit your DBs carers they simply need to step away from usual rules and flexibly understand the need.
If they use the term challenging behaviour please correct them that THEY are finding your DBs behaviour challenging because they are failing to meet his communication need - which you have been assisting with and his usual caters have offered assistance

Finally, and understandably you may not wish to use this, but … your DB did not consent to sedation and you, with POA directly declined sedation, so what they did was assault. They are not allowed to do that unless there is a very strong argument that they had made every effort to appropriately meet communication needs and his life would be in imminent danger if they had not acted. Even then they should have explained this to you.

Was just coming to say this. You must tell someone you suspect sepsis.
I went to A&E a few months ago with tonsillitis but told them I was scared I had sepsis (I did) Within 45 minutes I’d been triaged, had blood tests and was in a side room in IV fluids and antibiotics. No time to waste with sepsis x

Using this as a bit of a diary at the moment - apologies! It’s just nice to be able to say whatever I want and not have to worry. I’ve just managed to get a couple of hours sleep, I’m on a chair by DB’s bed so it’s not massively comfy. The staff on the night shift are much nicer than the staff from earlier. I’ve been screenshotting all your very helpful comments, and will review our options properly once I’m more well rested. DH is going to contact PALS in the morning as we’re still not happy re sedation.

The good news is - it doesn’t look like DB has sustained any lasting organ damage, his vitals are much better than they were this time yesterday, and he’s actually just woken up for a little while. He was completely calm and managed to have something to drink and eat. He’s just fallen asleep again.

Can I also just say thank you to everybody who has complimented DS. I was only 16 when I had him and I’ve grown up with him really. It wasn’t always easy but I think he’s turned out alright, actually! I’m very proud of him and I feel very lucky.

The hospital has already confirmed sepsis and are treating him.