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

@BatchCookBabe I don’t think you understand screening.

Thanks for putting it better than I did!

PALS and get the hospital manager involved.
Be clear you CAN support at home and are not going to hold them responsible.

I do understand this, but if this patient has come into A&E and now wants to go home, they should be able to. If he was able to get up and walk out he would have done. He is essentially being held against his own will.

They already have anticipatory medications at home which means time is short. This patient should absolutely have gone home over the weekend. I facilitated a discharge exactly like this last week. It just needs a doctor with common sense.

@Evenstar please escalate to the matron or palliative care team, your husband should have been able to go home over the weekend. I feel really sad you have not been able to get him home.

Read the post. They can’t leave because hospital won’t provide ambulance; private ambulance refuses; he’s not mobile enough to go home in a car.

I am so very sorry you have found yourself in this position.

Now is the time to forget the usual rules we live by and push until you get what you want, your husband at home.

I was in this position and went to the reception part of the ward my wife was on and said I will stand here until somebody actually listens to what we want to happen. I was unfailingly polite, didn’t raise my voice but was steely in my determination to get her out. After about half an hour somebody appeared from somewhere and the process very quickly began.

Sending you strength and determination.

i am glad you managed to get this sorted op @Evenstar

And as the wife of a cancer patient I can tell you he was failed so many times I’ve lost count and is now terminal as a result. I agree that ‘not fit for purpose’ is OTT but saving many lives doesn’t serve as an excuse for condemning someone to death due to neglect and ignorance.

I'm so sorry you are going through this. I do hope you get him home soon. Brain cancer both secondary and primary is awful.

Can you contact his consultant directly and ask for support. This is usually the best way to get things moving

Ask the ward Sister for the policy when PALS is shut and you have an urgent concern. Usuall there will be a Matron-in-charge or Site-Matron who would deal will urgent issues like this. But I guess it depends on how proactive the hospital is.

Poor you I’m so sorry you’re stuck. I have been in a situation where specialist came down and had a chat with the doctor who made that decision and it was sorted out. Can you keep pestering the oncologist he is under? Sometimes they will intervene but depends on their personality more than anything

Jesus christ.

In a similar situation we were given a letter by the hospice at home team to show to paramedics, should they need to be called. It asked them to treat at the scene but not to remove the person to hospital unless it was eg a broken bone from a fall. I know it won't help this time but it might if this happens again.

Thinking of you OP at this terribly difficult time. I'm glad you have your children with you for support.

Sometimes St John's ambulance volunteers will do this. If you can find the "discharge lounge" in the hospital you are in and go and talk to them, sometimes you can get out this way. The discharge team is pretty hit and miss in most places, and if you've got a jobsworth they would literally rather you die on a trolley than do anything against their procedure. But other places have people who can be really creative if you can just get to talk to them. Look up your hospital and "discharge team" and start calling the numbers. If you can find their office go down there.

My late DH was fully hoisted, no sit tolerance and no weight shifting, and got trapped in hospital a few times like this. Sometimes he did just get trapped, once for a terrifying 31 days. But other times someone helped. A wonderful pair of men carried him into our house at 2am once. It's worth asking. Ask PALS, talk to the porters, share the issue and ask for help. Sometimes someone can help. Not always but it's worth trying.

Good luck! I know this is a particularly maddening hole to fall down. x

True, but I think people are levelling the criticism at the government, not at the doctors and anyone working in the NHS, the majority of whom do an amazing job.

How hard for you and all your family and your husband and of course.
There are cancer charities you can call free of charge to speak to a specialist nurse.
I did that, a different situation, for my husband, the Prostate Cancer charity. On 3 occasions at different times, the person I spoke to was excellent, so helpful.

If not the charity for a specific cancer, MacMillan will help, by phone or in person.

I am so I sorry to hear all that you are going through just now.

I'm really sorry for your predicament. Whilst there are some good people working within the NHS there are also a lot who simply don't care. The systems and processes are cumbersome, bureaucratic and the entire service is not fit for purpose. I made the mistake of taking my mother into A&E to have her left in a draughts corridor for 4 hours with no treatment. We managed to get her out to return to her comfortable care home.

I dearly hope he is snuggled down in his own bed soon, surrounded by his own things and people who love him.
When we die all we can take is the love so making him feel loved and safe is the best and final gift you can give him.
God speed to your husband - I hope his end comes peacefully.
Sending love to you all. ❤️

When DH was end of life with cancer he needed turning in bed, there is no way on this green earth he could've sat in a wheelchair for even a moment. All transfers from hospital needed an ambulance with a stretcher, not a chair.

Stay strong. Brain cancer is the worst 🤍
Losing the person you love a little more each day. It is brutal, look after youself too 🤍

I hope your husband is home by now or very soon and is comfortable

this should not be what we accept from our healthcare, families do not need to deal with such stressful situations in these circumstances I really do feel for you all

Anyone else in this situation, contact a human rights lawyer immediately and get them to threaten to sue for kidnap or similar.

This action by the NHS was neither legal nor humane. They cannot keep an adult in hospital against his will or against the will of his health POA. A shot across the bows from a lawyer to the head of the NHS trust would have seen him released in double quick time.

OP I am so happy for you that you got him home, I hope he is happier now he's there.

I agree that the NHS gets a lot of unfair stick. Various members of my family have needed it in the past few months, from GP to emergency hospital admission. Weve had great care from professional and dedicated people.

@BatchCookBabe I’ve reported you, your comment is fucking awful, you should be ashamed of yourself.