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

He really isn’t able to be transferred safely between beds, cars etc into the wheelchair his mobility has been very badly affected by metastatic brain cancer. Believe me if it was possible we would be gone by now

Just wanted to send you a hug OP its unbearably tough being where you are. I doubt you're sleeping anyway but 40 hours is literal torture. 💐

This is appalling, you shouldn't have to resort to this. Call the hospital palliative care team, they will facilitate a rapid discharge with the right medications. Please don't go home unless you have the anticipatory medications, you may end up having to come back in in an emergency.

Nothing to add other than I hope he makes it home very soon.

Unfortunately this happens all the time. Doctors sometimes do not see the bigger picture and keep requesting investigations that are unnecessary for palliative patients.

Demand to speak to the matron/ward manager.

Inform them you want to speak to the site nurse practitioners who are 24/7 for most big hospitals and organise the movement and admissions of all patients. Demand discharge and contact PALS at 9am if no movement.

I am so sorry.

Oh well done your family member ! Are you able to contact oncology or palliative care for anticipatory medication? Out of hour services in many parts of the country are not fit for purpose either I am afraid.My very best wishes to all your family.

It's not fit for purpose. My young 25 year old nephew died under their care. They have admitted his death was avoidable. This was a fit young man til they gave him the wrong treatment.

I agree, especially re social care.

Lack of provision and delays in identifying appropriate provision leads to so many delayed discharges and consequent bed-blocking that it impacts waiting lists tremendously.

As someone who falls within this demographic I am very grateful for the tests my GP organised recently rather than wait until I am so ill that I cannot be helped. Other countries do these test you quote as a matter of course but then the NHS, however good it may be in particular circumstances, isn't known to be a preventive route to better health.

We had this sort of scenario with my late mother and frankly the only way to avoid it is to refuse to go into the hospital in the first place. Hope you get home soon @Evenstar

All the anticipatory medications are at home already and we have the hospice and district nurses supporting us.

Op has repeatedly said that due to mobility issues they need an ambulance. I'm not sure if you know what mobility issues entails, but it doesn't mean they just don't have a car.

Op thinking of you, we had similar with fil, it's very distressing when you to have to fight so hard like this, I hope you get your DH home soon 💐

FFS are you having a laugh! Have you ever seen a really sick person - it’s not just as simple as getting a taxi or OP would already be home with her DH 🙄

@Evenstar I hope you get him home soon 💐❤️

@Evenstar I hope your husband is not in too much distress and I hope you are OK.
It is such a hard burden to shoulder.

Oh why didn't the OP think of that! Wow! So smart! 🙄

I'm a cancer patient too and my care has been exemplary. I have nothing but praise for the NHS .

This is someone who cannot walk, cannot stand, cannot turn over in bed, probably can't sit in a wheelchair. Do you really think he can just hop in a taxi?

I hope the paperwork can be done quickly and get you home soon, Evenstar.

I hope it all works out for all of you. There are frequent nightmares in a terminal situation, not least for the patient themselves. I really hope the doctors actually looked at him and at you, and not just at a chart on an ipad. I am so sorry and wish I could be there to help in any way I could.

When we were in a similar situation I involved the Chief Nurse of the hospital concerned and CEO. I found the CEO's email address by using CEOemail.com Good luck, the whole process is a fucking nightmare and should never be allowed to happen.

You completely missing the point of screening programmes

@becks571 it’s because were scared of being sued for not doing enough. It can be extremely hard sometimes to find a balance that the patient and all family members agree on.

Quite. Individual questionable decisions [and this may not have been one depending on reasons which clinicians can and do disagree on.- and could be changed].
Using cases like these to bolster sheer opinion is skeevy as hell.

Sending love and strength to you and your family. I have recently retired from the NHS after several decades and it has been hard seeing the decline in standards. My sister recently spent 17 hours in A&E after a stroke, she didn't even get corridor care. Thankfully she has made a good recovery.