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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

To refuse to have a hospital bed delivered today?

46 replies

Notabove25 · 02/03/2021 14:02

DH has been in hospital for weeks. I haven't seen him so can't gauge for myself exactly what he can/can't do and there seems to be some disagreement between the OT and the doctors about how close he is to discharge. Doctors are saying definitely not ready to come home, they want to get him a short term symptom management place at a hospice first.

OT seems determined hes coming directly home and I've been called today with "good news" they can deliver bed, hoist and various other equipment today.

I've said no because:

I'm working and whilst I could arrange to be there at short notice in an emergency, I don't think this is it.
No one has talked to me about what care is needed, what support will be put in place or how any of this equipment will be used.

-There's no imeadiate prospect of him coming home and whilst I can make space for all this stuff I have quite a lot to do first to make that happen. I'd prefer to leave family life as it is until necessary. -I don't want to look at an empty bed for weeks. -He's been given up to 3 months to live and the way things have been the last few weeks, I'm starting to think he may never come home

Having the bed delivered now feels like buying the pram before the baby's born.

OP posts:

Hoppinggreen · 02/03/2021 14:05

I’m really sorry for your situation and I think I would do the same in your place
Once there is a clear plan in place for his discharge then you can arrange what’s needed

MNWorldisCrazy · 02/03/2021 14:08

Could turning it down result in him potentially being discharged without suitable equipment though? Could it be taken the wrong way?

LIZS · 02/03/2021 14:08

Don't blame you, what a difficult situation. He needs a proper care plan in place before you can contemplate having him home. And an assessment of the home by the ot. Can you speak to the discharge team at the hospital?

CuriousaboutSamphire · 02/03/2021 14:09

Oh god, that sounds grim! And I would agree with you. OT seem to be putting carts before horses!

Tell OT no. Talk to the doctors as much as you can! Your DH may well be more comfortable in a hospice. You need more concrete information... and to talk to him, if that's an option!

Ponoka7 · 02/03/2021 14:10

You need to speak to the OT and ask his whole discharge/after care plan. Until the bed is delivered, other parts can't click in. Not everything can be planned for and things might change. They can and have to get the bed in place first, though. That doesn't have to be today of course.

Do you want him home?

CuriousaboutSamphire · 02/03/2021 14:11

@MNWorldisCrazy

Could turning it down result in him potentially being discharged without suitable equipment though? Could it be taken the wrong way?

No. They can't do that! They have a responsibility to him no matter what!

This sounds ike a miscommunication. OP can sort it out if she simply stands firm and says no, she is following the advice of his doctors!

yoyo1234 · 02/03/2021 14:11

so sorry for your situation. I would want to stick with what the doctors say. I would want one clear plan.

hatgirl · 02/03/2021 14:11

If the doctors are saying he isn't ready then it's not happening just yet.

The OTs are probably just trying to get ahead of the game but realistically these things can happen pretty quickly when they need to.

All the reasons you have given are valid reasons not to have the equipment yet.

He will most likely be discharged under the fast track continuing healthcare framework, which means that the NHS will arrange and pay for all of his care.

Ponoka7 · 02/03/2021 14:11

"Could turning it down result in him potentially being discharged without suitable equipment though?"

No it can't because the patient hasn't turned it down. He, as an individual deserves the care and a suitable care plan.

Hadalifeonce · 02/03/2021 14:12

When my mother was being discharged from hospital, we had a call telling us the care plan in place, also to agree to the hospital bed being delivered a couple of days before she was due home.

We were consulted, not told what was happening.

As tough as this must be for you, you are right to stand your ground.

Windinmyhair · 02/03/2021 14:14

I would say no too - I'd say it hasn't been confirmed that he is coming home yet and what his needs will be when he does, and that they need to liaise with the Drs as to these details, which need to be confirmed and agreed with all parties first.

Hold fast. Don't let anyone rush you. Gather more information first and make sure that any decisions that are made are in everyone's best interest.

Roystonv · 02/03/2021 14:16

Contact them and emphasise that as consultant has not given the go ahead you will not be accepting delivery at this stage and that when he does you would be grateful for more notice. Speak to consultant/secretary and ask them to liaise with OT. Dreadful you are in this position of argy bargy in such a sad situation. OT are not medics and are there to facilitate decisions made by medics. May need to make another fuss op.

fyzz · 02/03/2021 14:17

I am sorry you are in this situation. Are you the person who was posting a couple of weeks or so ago about where to put the hospital bed?
I agree that if there is definitely no prospect of discharge in the next week or so then they might agree to defer it. I do know that there is quite a lot they will need to deliver and sometimes these things move fast all of a sudden with end of life care. There comes a point where treatment ends and palliative care is different from active treatment.

Jent13c · 02/03/2021 14:40

I think you need to decide as a family what is of most importance to you. There are many benefits to home and many benefits to hospice your palliative care nurse would be happy to discuss in detail. If you decide for home things will move very quickly, you will probably find it overwhelming. There's a short window when someone's symptoms are managed before it becomes inappropriate to transfer them and if the family really wants to get home we put everything in place as soon as possible. I personally had a patient this week who has to wait 2 weeks in hospital for a bed to be delivered so I can kind of understand the OT pushing to get everything in place so it isn't equipment holding him back. I take it you are waiting for care as well?

I'm so sorry you are in this situation, I hope you have good support around to help you through.

TimeforaGandT · 02/03/2021 14:48

I am sorry you are in this situation but we also found we had to wait for a hospital bed in an EOL situation when we really needed it so I would be wary of rejecting it.

Laiste · 02/03/2021 14:55

YANBU OP it sounds as if the bed coming would add to your stress considerably right now.

How is it going generally with you? Has your colleague butted out now?

AJB120 · 02/03/2021 15:10

I’m so sorry your going through this.

When did you last speak to the staff on the ward? Things may have changed this morning in terms of discharge and you may get a phone call perhaps?

You need to speak to the ward to discuss your husbands plan. Also speak to the OT/therapy team. I work on therapy team with OT and physios so have a good understanding of discharge planning in these terms. If you husband needs these things he shouldn’t be discharged home without them unless he has capacity and declines equipment himself. If he is needing a hoist I would imagine they would also put a care package in place to support him with hygiene needs etc.

I understand where OT is coming from as discharges can be very quick and they are probably just getting things in place ready.

You need to think about what is best for you and your family.

Original poster

Notabove25 · 02/03/2021 15:16

I keep waiting for a palliative care nurse to discuss the care with me and whilst I've had a couple of calls from people saying they will be involved, no one hiw isbactially involved yet.

DH is very clear that he wants to go to the Hospice and be discharged to home from there.

In concerned that once there's somewhere to "put" him, they'll think they can send him home regardless of the care he needs. We do very much want him home, but we also want to know we can make him comfortable, which I'm not sure we can atm.

Colleague is still "worried" about me but I've told her I prefer to be distracted by work and don't want to talk endlessly about it, which she clearly thinks is the wrong strategy, but that's up to her. Thank you.

Should OT be coming to see the space? There's been no suggestion of that, the most I've been offered is a video call so I can shown them it (which seems pointless) I imagine due to Covid.

OP posts:

frumpety · 02/03/2021 15:21

It is perfectly ok and normal to ask for it to be rescheduled for all the reasons you have mentioned. Sounds like the OT is being super organised, but I think it is easy to forget that all this 'stuff' needs to fit in somewhere and most peoples homes don't have the space unless some serious re-jigging occurs.
I would try and talk to the consultant and see if they have any idea of when the bed will be available in the Hospice and check that that is still the plan.
So sorry you are going through this

Laiste · 02/03/2021 15:25

Could you ask if there is a main/dedicated person who is going to manage DHs case for you? I'm sorry i don't know the terminology. If not, can you ask for one?

I know when my mother was very ill i never got to speak to the same person twice and it was very frustrating and made everything into a ridiculous game of Chinese whispers almost. And that was when we were allowed to be there face to face! and hunt familiar faces down at the desks.

frumpety · 02/03/2021 15:52

Not sure where you live OP, but in my area , you will get up to 4 care visits a day from carers to help with personal care etc if required. Night sits can also be organised but they usually don't cover every night.
Often District nursing teams are involved if someone has a syringe driver for symptom control or needs medication that is given as an injection. There is usually a 24 hr service, so can be called if there are issues with symptom control.
I would recommend speaking to the Palliative nurse about what is available care wise, so you have an idea of how much you will be expected to do.

SakuraEdenSwan1 · 02/03/2021 15:54

@Notabove25

OT seems determined hes coming directly home and I've been called today with "good news" they can deliver bed, hoist and various other equipment today.

I've said no because:

I'm working and whilst I could arrange to be there at short notice in an emergency, I don't think this is it.
No one has talked to me about what care is needed, what support will be put in place or how any of this equipment will be used.

Having the bed delivered now feels like buying the pram before the baby's born.

They normally have MDT meetings so every one is on the same page, this is very unusual to be honest. I would ring the ward and speak to the nurse in charge, it could well be something that has been discussed directly with your husband.

FrankskinnerscRoc · 02/03/2021 16:08

This is a bad situation OP. I wouldn’t worry about work or anything else, I’d just get my husband home.

Jent13c · 02/03/2021 16:16

I'm a big fan of getting out of hospital as soon as possible and to hospice. I know the hospices near here are experts in symptom control and our one has a physio, OT, dietician, macmillan nurses who can make the impossible happen with care and equipment. I personally would advocate to get you in as an essential visitor on the acute ward so you can meet with the palliative nurse who in our trust would be rounding on him daily. If that's not appropriate due to your trusts rules/attitude towards covid then get him to facetime you when the palliative nurse comes in. They work with the ward to get things moving.

Every trust is different but I would be doing my job incredibly wrong if I 'put' him home without making some kind of plan for his short term future care needs. In my opinion that would be a reportable error on any nurses part. Palliative care should be a fluid thing and the staff should work closely with you. If you get a couple weeks down the line and freak out that you can't have him at home thats OK. I would much rather you got to spend time with him as his wife that spending this precious time stressing about everything that needs done.

B33Fr33 · 02/03/2021 16:19

A friend recently went through a very confusing week getting organised for their mum to return home for end of life care.

That was resolved through a conversation with a discharge nurse(? - I think a nurse but certainly a medical role for post hospital care coordination rather than a social worker or OT) - because different teams had different 'reports' and conflicting information was happening hourly.
They've got to make sure everything is in place and that includes a lot of assessment. Make it clear that you are completely in the dark and as nok need to discuss what is happening.

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