Terminally Ill DH Stuck at Hospital Don’t Know How We Can Leave

[Evenstar]

My husband is terminally ill and we were railroaded into a hospital admission by out of hours on Saturday which on seeing our oncology team today was deemed wholly unnecessary.

A consultant from Medicine was of the opinion we should get the scan we have been waiting for since 2am on Saturday morning (24 hours of which was on a trolley in a corridor) that he would expedite. He thought it was in DH’s best interest to get home ASAP. We are still waiting and when we suggested self discharging they informed us we couldn’t have an ambulance which we need to get him home. They have said they will get another doctor to come and see us but can’t say when that will be and they wouldn’t bother booking the carers for tonight as we would be unlikely to get out.

Has anyone else been in this situation? We rang a private ambulance company and they won’t take a patient without medical clearance. It feels like we are being held hostage with no prospect of release. We can’t leave without an ambulance due to his mobility

I am so sorry .The NHS is not fit for purpose nowadays.In your position I would ensure your husband has a relative by his bedside to advocate for him if at all possible and ensure he is made as comfortable as possible .What difference is the scan going to make To his management?
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I am so sorry OP. Is the oncology team able to support with advocating for what you need to get him home. Would the palliative care team be of some assistance here. Have they said why the scan is necessary or why he has been left waiting for it since Saturday, is this likely to meaningfully change either his prognosis or treatment plan. Have you made contact with the Pals team or been able to ask the ward sister what is going on. Surely in these circumstances they should be removing all barriers to facilitating a discharge home.

Oncology said he should have been offered precautionary medication and not brought in at all. We have tried to take that option twice since yesterday evening when we were finally seen by a doctor, but it has been refused. He hasn’t been left at all, some of our adult children are here to ensure that. He is high risk for pressure sores and only got a proper bed in the early hours of this morning. I was up for 40 hours by the time I went to bed last night as I had to stay with him to ensure he was turned, had his pad changed and got drinks.

I’m so sick of hearing people say the NHS is not fit for purpose. It’s not perfect but it saves so many lives day and day out. I say this as a Cancer patient

@MauveLibrary Oncology were sympathetic but can’t overrule another department, PALS are shut for the day now.

I am so sorry to hear this, OP. I have always found PALS very helpful in moving things along so echo the advice to contact them.

Perhaps you could also ask to see a palliative care doctor in hospital - they might be highly supportive of DH being allowed to go home and might help to formulate a plan to avoid further unnecessary admissions.

I would try the hospital palliative care team - they should be able to advocate for him to get him home.

Ask to speak to hospital pallative care team if they have one.

No words of advice but just wanted to send you sympathy

@Driftingawaynow I agree that the oncology services are very good on the whole. The lack of capacity in A and E is a scandal and looking around us over this hideous weekend is largely due to the failure of social/elderly care which has been foreseen for many years due to the bulge in the elderly population due to the post war baby boom.

Driftingaway now -and I say it as a long retired GP .Terminal patients being nursed in corridors is not acceptable for patients or the staff who have to care for them.

I am so sorry. In the morning can you speak to to the Pals team and word it in the strongest possible terms that it is his wish and his familys wish that he be allowed to go home and receive care there that keeps him comfortable. Palliative care might be another avenue to getting an appropriate plan in place for discharge home. Surely the doctors can see that its perhaps not in his best interests to have to go for any more scans or be kept confined to the hospital...

He's not being held hostage, he's waiting for a scan. What type of scan have they requested? Who requested the scan? A 2 day wait for a scan is not abnormal, particularly if over the weekend. Presumably the medical team do think he needs to be in as otherwise they would discharge him?

Your best bet is to speak to the doctors caring for him tomorrow am and ask for the scan as an outpatient if there's no prospect of it happening tomorrow. Can the oncology team not speak to the team caring for him? I don't see any reason why the medical team would want to keep him in hospital unecessarily

If you are in England (not sure if it’s in Wales & Scotland too) can you use Martha’s Rule? It lets NHS patients, families, and carers request a rapid review when a hospital patient’s condition seems to be getting worse and concerns are not being addressed.

I’m sorry, but when a loved one is terminally ill and has only days left, what is a scan actually going to achieve? That patient wants to be at home, surrounded by love, care, and dignity. Waiting two days for a scan that will have no impact on the time they have left is unnecessary - This man needs to get home!

OP, from experience you just need to be forceful and consistent, hopefully PALS will be able to help tomorrow... If not can you get creative, can he be put in a wheel chair and transited in a van? This worked for my love one - sending lots of love x

Would the oncology team be willing to give you a letter to show the private ambulance company?

You could make a discrimination argument - It's unfair that the company requires this - your dh has capacity so is entitled to self-discharge against medical advice, it is only his disease-related disability that prevents him from doing so

That poster has a point though. Sometimes people wait many months for a referral/to be seen by someone, whilst others are railroaded into things - like doing tests, and being pushed into procedures for things that would have been better if they had been left alone/if they hadn't been done.

The NHS is all over the place! Their budget is dependent on getting so many people in for tests - especially the over 55s.... poo tests, general MOTs, breast screening, prostate examinations, cervical screening, the works. They badger people sometimes, and end up changing a relatively healthy older person into a patient, purely to bump up the numbers and get bonuses and a decent budget next time.

What are the mobility issues that mean he needs an ambulance?

I’m disabled (use a wheelchair) and have quite a few friends who are similar.

would an electric wheelchair and a wheelchair taxi be a solution?

Also @Evenstar Just leave. As has been said, he's not in prison!

Is he under the care of a hospice, might they be able to help? I had a family member in a similar situation a couple of years ago, and I am not sure but I think the hospice may have been of help here.

So sorry for the situation you are facing.

Hard disagree. I think if gp contracts, social care and hospice care were sorted out the rest of the NHS would function way more smoothly.

in the OP, she said he is not mobile, so they need an ambulance to take him home.

A family member has found us a private ambulance company who are happy to take us with a paramedic on board, just got to get the paperwork done and give them a time to collect us