To refuse to have a hospital bed delivered today?

[Notabove25]

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.

I can't believe what I'm reading.

Op just as the other side of the coin we were desperate to get a dying relative home (because that’s where they wanted to be) and they ended up getting home before the hospital bed and they were very distressed /confused when we had to move them into the hospital bed when it arrived the next day. It depends on your home setup but it might be worth having it all ready and make sure you’re comfortable using any equipment before he’s home and it’s suddenly a high stress situation.

What an appalling situation to be in and how incredibly unfair of OT to add to your stress when you’ve got more than enough on your plate. The suggestion to get the medical team to put OT back in their box is an excellent one.

So very sorry. 💐

If you’re really not comfortable say no but I imagine the OT is working towards things being in place for when he’s medically ready/stable enough for discharge from either the hospital or a hospice. I would speak to them again and explain your worries as you have here.

Only his Doctor will make a final decision on discharge but I’ve seen patients sent home without equipment before and you definitely don’t want that. They can expect OT’s to conjure up equipment in hours, which for things like beds isn’t always possible.

Hospital OT’s are often too squeezed to be able to do environmental visits, I know lots don’t do them at all. They only put short term d/c equipment in place. Council OT’s would look at longer term things but these often take many months and waiting lists are long. I would recommend accepting the bed (as these can be major barriers to discharge) but make it clear he won’t be coming home till you and him are both happy with the care plan and everything else.

So sorry OP. Don't let them bully you into making a decision without adequate support and consultation.
At the end of the day, all Social services and OT's want is to shed the case load. They won't be putting the needs of you or your husband first and most are probably over stratched and maybe not in their correct job role even. Many NHS staff have been redeployed so you may not be even dealing with someone doing the job they are trained to do.

Talk to PALS and don't be forced into anything.

Op it sounds as though they are just getting everything ready for his arrival home. Palliative care nurses don’t tend to order equipment so I suspect it is being ordered by the hospital preemptively.

Symptom control doesn’t normally take too long in a hospice and it is the duty of the hospital to make sure he is only discharged if safe to do so, this would include having home set up.

You should have been informed of this by the hospital and I think it is very unfair that they have not done so. Have you spoken to anybody about possible discharge care etc today?

*sorry, they have not done so.

I did actually contact PALS about the communication difficulties, just over two weeks ago. I got a standard reply saying response time is 5 working days and have heard nothing since.

So sorry, you might need to chase it up. Everything is so crap at the moment. Most peole seem to be working from home if they can, or NHS redployed and not doing the jobs they trained to do.

He's in a safe place at the moment and nothing needs to change suddenly, just stay strong and don't be pushed to do anything you're uncomfortable with. Push them, they are the ones who need pushing.

I’m sorry to hear you are in this situation OP.

I can’t speak for your trust, but I know where I am the equipment needs to be in place before our discharge service will take the referral to source care etc. This is quite a new thing, I think there must have been problems with patients being home before equipment, or sometimes equipment is not available when ordered as there is a shortage nationally.

If I were you I’d ring the ward and ask to speak to an OT about the discharge plans. What care and support will be put I place etc. If his wish is to be at home that’s what everyone should be working towards, and they should be able to give you a time frame of when they expect him to be discharged home. Often the palliative care team would handle this sort of discharge, with the OTs just ordering equipment on their behalf. But then depends on the specific circumstances.

I’m sorry that you’re going through such a tough time.

I’ve read some of your other threads and I think you’re being very sensible. He needs and deserves a properly thought through and agreed care plan with hospice support and you and your sons need to be supported in that too.
I would refer the OT back to the medical team and request a MDT before agreeing to proceed further.

This happened to us. The bed has just been removed unused 2 months later. I felt it was hasty.

Have you even got space for bed. hoist etc ? They are not small items of equipment. I know when we were thinking about this with my parents, the only bedroom large enough (and only just) was the main bedroom so we would have to have got rid of their double bed. The only other space was the living / dining room - again only possible if dining table, chairs and sideboards moved out.

Even if everyone wants this to happen - this type of moving furniture about takes more than a 5 minute whizz around.

I’m sorry that you are in such a difficult situation, OP. I work as an OT in a hospital and am involved in similar discharges as you DH. A few points:

It sounds like there are 2 potential discharge options for your DH. 1- discharged to a hospice for symptom control, and then home from there. 2- discharged straight home, with care in place and the necessary equipment.

There are normally strict rules as to who is eligible to go to a hospice. It’s either for patients needing complex symptom management or for patients in their last days of life (occasionally weeks). In my trust, it is the specialist palliative care team (based in the hospital) who make the decision about admittance to a hospice.

If your DHs preferred of care is ultimately home, then the OT will be asked to get everything in place prior to his discharge from hospital. It’s likely they will be expected to do this, even if he spends a bit of time in a hospice prior to coming home. So, this means getting the equipment in place and ensuring the care package has been sourced.

As a PP has said, recently, there has been an expectation for all equipment to be in place prior to a care package being sourced. So this could be why there’s a push to get the equipment in.

The OT should ask for room size, to check that all equipment fits in. In my trust, we send a technician out to measure up, but this can be done over the phone. They’ll need to think about room for carers either side of the hospital bed, and the turning circle of the hoist, for instance.

Lastly, speaking as an OT involved in palliative discharges, when the patient is medically stable for discharge, then there is a great emphasis on getting the patient home or to their preferred place of care as quickly as possible, whilst also ensuring their needs will be met. So, this can feel like things are moving too quickly for the family but it has to be weighed against the knowledge that there is often a short-time frame in which the patient is stable enough to leave hospital and get home. All the very best.

I'm not sure it's all going to fit. We're using the dining room, which means other furniture needs to be moved out, which I can't do on my own with no notice.

I've been told the bed needs approx 4in in each direction more than a standard single, but no idea about the other equipment. When I last spoke to OT they were still assessing what other equipment might be needed.

I've also no idea what other stuff I might need to provide. Bedding? What size? How much? Washing equipment? How many changes of PJs he might need, feeding etc. I haven't seen him for weeks, so I really don't know what's normal for him now.

I work in a big hospital and a discharge is arranged with a discharge officer. See if one is allocated to the ward? I would request a telephone appointment with the OT. Failing that I would ask to speak to the ward sister or ward manager. You might have to be hard and say that you will accept no equipment until this is resolved. Are you able to speak to your husband at all?

My experience a couple of years ago when my father came home from hospital bed, commode, walking frame etc arrived. Then later that day carer company rang to make appointment to come round that day to discuss care. They knew more than we did as to what was needed. Although he came home using the commode, he needed pads, large plastic bed sheets, wipes, cream. I got extra fitted sheets, 2 single duvets, new pillows, several pairs of pyjamas, straws for drinks and also before long a plastic sippy cup. Although he was supposed to have 4 visits a day, we managed with 3, as we were feeding him. The carers we had were very good and when he was sick and needed changing a couple of times, we called them and they came out to help. We managed him at home for 3 months until he had to go back in hospital.

Despite being given emergency telepone numbers for nurses to call, when we did need them, we couldn’t get hold of anyone, doctor was useless and it was really hard, but we look back and are glad he came home for the few weeks that he did.

How can OP work when her DH comes home? Do carers do everything? It sounds impossible. When my mother was discharged, I took it in turns with my father to rush around getting food, drink, medication etc. It was full on and 24/7. No way could I have worked at the same time.

A hospital bed will have a mattress but you'll need some single sheets and duvet. The hoist will be a manual hoist and so you'll need a charging point for it and enough space at the side of the bed. The OT should really have discussed all of this and ensured you have sufficient space. They should be part of an MDT planning the discharge, even if it is via the hospice.

You were right to refuse equipment if you're not happy with it, but the OT should be ringing to discuss your concerns.

I'm sorry you're having a hard time and I hope your husband gets home to you soon.

For coming home if your budget can stretch id have a look at sheets for hospital beds
www.completecareshop.co.uk/beds-and-bedding/sleep-knit-bed-linen/
They will stretch and won't need ironed as they are t-shirt fabric and super easy to change when he is in the bed. I would get a few sheets and top sheets and don't bother with a duvet. Grab a bunch of these
www.dunelm.com/product/teddy-bear-throw-1000162540?defaultSkuId=30533624&branchCode=0485&gclid=Cj0KCQiAhP2BBhDdARIsAJEzXlGbgOZV53ohujsXgzBWRj7lPRJmxlnsCs9wNicWhZIRpzuLeXa-tZUaAktWEALw_wcB&gclsrc=aw.ds in a few different colours that he likes and they can just be bunged in the wash as needs be and dry quickly. Our hospice encourages fluffy blankets like that, its so much nicer than the NHS thermal blankets.

For feeding, I wouldn't have thought there would be too much different, its all about how much he wants to eat so will be very individual so you may find his appetite gets a little better with steroids and once nausea is under control.

Pjs you will need regardless of when he gets home, just get his favourite style that he normally likes at home, places like supermarkets and matalan are great for good prices. You may find that he needs more tops than bottoms when spending a lot of time in bed, sometimes we leave bottoms off if his skin gets a little sore.