Help BIL in hospital - loss of bladder control with back injury

[Glassbackhelp]

Hi all. Bear with me on this as it's long but I'll try and précis it all! BIL has had a back injury for 18 months which worsened significantly recently and he's now signed off work. At weekend he lost bladder and bowel control so was hospitalised. He's had no treatment bar painkillers and had MRI to check the nerve situation. It's not totally pinching the disc (?). He's catheterised as no sensation of weeing but he's being passed from neuro to orthopaedics and back and now they're sending home with an instruction not to go upstairs (he's been on bed rest ) and a commode, but nothing else by way of a plan. His parents my in-laws are frail but talking about buying a new bed for downstairs and want my DH to set it up. This all seems mental to me. Nothing will change will it if he doesn't have surgery or manipulation of some sort like chiropractor?? I get that the NHS can only do so much but is it normal to expect a house refit but no onward care plan or news of what they'll do next ? As we can't visit it's hard to get a clear story and he is mildly disadvantaged by having issues with processing info and communicating (has dyspraxia) What can I do/ who can I ring fo find out what's happening? PALS? Are they a thing still? His GP? In-laws are very upset and too old to be dealing with this. Any help would be appreciated. Thank you!

[iklboo]

It sounds like he could have cauda equina syndrome. Physio/chiropracty is unlikely to make any difference at all I'm afraid.

Surgery can help but there may be a reason they can't operate right now. I'd contact the hospital and ask for an explanation. PALS can offer advice.

[Glassbackhelp]

Would you start by ringing Pals? The ward don't talk to anyone without his permission and the nurse in charge has said to MIL she can't say what's happening. Depends on the docs not her. He's now moving hospitals but says he might be home Monday. It's all so weird. I'd love to read his notes and get the truth of what's what.

[LeGrandBleu]

Has he had a brain MRI to rule out MS? The back injury might have masked the onset of symptoms.
Have they confirmed his the loss of sphincter control is linked to back injury?

[Tolleshunt]

I don’t get this. Sounds like it could be cauda equina, and if that’s the case, it needs to be operated on ASAP or he risks losing function for life. What has he been told is his diagnosis? Has he been told they’ve investigated for caudal equina and definitely ruled it out?

[Glassback]

Name changed for this and couldn't face changing back and forth last night but thanks for the replies
With regards to diagnosis no clue.
He was told ore lockdown he needed surgery but then all no. Emergency was cancelled. It then worsened and he had the pee/ poo incident and got taken in. They did MRI after he'd been in 2 days and said it wasn't pinching the nerve so I'm assuming the need for urgent surgery was ruled out then. He wet himself in the scanner and then the catheterised him and he's been put on and off bed rest depending on the day and who he saw ever since. They downgraded his severity and moving to a lower grade ward and that's all I know.
Mother in law is really stressed as she knows he is prone to tall tales and doesn't always report correctly - he is worse than people think in terms of his capability. He's a nice bloke, very sociable but not practical in any way and needs a lot of day to day help in terms of shopping / telling what needs doing. Sorry to drip feed but we won't get a full story from him so it's knowing who to ask

[Glassback]

No brain scan no. He had an accident which kicked off the bad back so I guess it's all linked to that

[Thymeout]

Start with PALS. Perhaps explain that his elderly parents are distressed and need more information before adapting their home. Their only communication is via their son, the patient, who they know is an unreliable witness because of his learning difficulties, which they may not be fully aware of.

I have been in a similar position when an elderly relative was taken into hospital. She had a chronic condition that suddenly deteriorated and we wanted to know if we should be looking into residential care or if she would be able to live on her own with visiting carers. Her GP explained that he couldn't talk to us directly about her prognosis but managed to convey in general terms the chances of her being able to return to coping on her own.

It's tricky to navigate because of patient confidentiality but PALS should be aware that it's in the patient's interest that he has informed family support. Good luck!

[iklboo]

You can ask your BIL to consent to you asking about his condition, care & treatment. I did that when my mum was in hospital. Once she'd told the doctors and staff I had her consent they were very helpful and shared everything with me.

[Torvean32]

It does sound like Cauda Equina. Id insist on an OT home assessment before he is discharged.

[Spartak]

If he's willing, ask your brother in law to consent to the doctors treating him to discuss things with your brother. There's no need to involve PALS as they won't be able to tell you anything without consent either.

Tell your PIL to hold fire on getting a new bed. In some areas the NHS will loan one if it's necessary. All other equipment such as commode, rails etc that he might need should also be provided.

[acocadochocolate]

In this situation, I would get BIL to call GP and talk it through.

[TW2013]

Can you inform the hospital that it is not currently safe to discharge him to his parents home and he will need to stay in until it has been assessed and adapted. A blocked bed will focus their minds. He might be enthusiastic to go home and if the hospital have not seen the PIL or the house they might have a very different concept of what he is going back to. If he is say 40 the hospital might be imaging parents who are mid 60s, but actually they are nearer to 80.

[Thymeout]

Yes. The obvious solution is to ask BIL to give his permission for relatives to discuss his case with doctors. But it sounds as if he may not be giving the docs the full story about his circumstances, or capable of making rational decisions about a life-changing prognosis. And the covid restrictions on visitors will be making it even more difficult for family just to have a word with him about allowing them to be in the picture. He may be so desperate to get out of hospital that he's not doing or saying anything that he thinks will delay his discharge. (I know the feeling!)

If he agrees, fine. If not, try PALS or GP.

[glassback]

Well he's coming home today - he has improved and can now manage stairs. He managed to email surgeon who said the hospital hadn't contacted him at all (they said they couldn't reach him - said they'd phoned several times??)
He's having surgery in September as it stands but if he worsens we will have to get permission up front to discuss with the ward. It's been mental but he's improved so much that he was seen as bed blocking. Thanks all for the replies. I appreciate it.