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

Thanks for that lovely response @EmeraldRoulette I appreciate it. I feel like a bit of a twonk. (Not reading the OP's posts properly and asking what I did!) Hopefully she accepts my apology for being a nitwit! As I said - I apologise to anyone else I offended too.

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Hope you were able to take him home. Ask if there is a palliative are team. They can get patients home very quickly. Also look into a healthcare plan, specifically about not transferring to hospital unless absolutely necessary.

I have asked for my comment to be deleted/withdrawn ... (the taxi one...) Sorry once again @Evenstar (and anyone else I offended.)

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The two aren’t mutually exclusive!

Yes, they save many lives. However, it also completely fails scores of people.

But it’s the truth. The NHS is dire. Maybe you’ve had a positive experience, but for every positive experience there’s a hundred who have negative experiences. I’ve had a lot of interactions with the NHS over the last two years. DH had a heart attack. BIL a stroke. Lost MIL. The service received on every occasion was beyond awful.

You must ALWAYS waive pharmacy. Pharmacy is a trap - it never comes before 4pm/ the end of discharge so it will always mean AT LEAST one more pointless torture of a night in hospital with no proper care, no turning, no water, bright lights and shouting all night. And of course more chance of coming out with hospital acquired pneumonia and MRSA.

But you can waive it. Get the prescription printed out and fill it yourself later. You say: we waive pharmacy, there's a care package in place and the package is managed by X, and you get the name of the complex discharge coordinator and you just BLITHELY assure everyone they agree with you. If you call ahead of admission even better but one so often gets overtaken by the circumstances.

@Lelot I did try waiving pharmacy

It was incredibly straightforward to say, I wanted my dad to be home and I would happily come back and collect the prescription

It took them about two or three hours to even consider that suggestion and then they gave me a very long lecture on all the terrible things that would happen to him if I didn't come back and get the medication

Again, I think it's a legal thing that if I do something awful, they will say that someone - not sure who in this case - could sue them for agreeing to waive pharmacy

anyway, it's totally ridiculous and people who don't know what battle to fight are completely stuck

I've had to fight several battles, but for some reason I've managed to get advice on which ones I was going for. Also, it was apparently the advantage of having parents being ill a LOT and in and out within weeks of each other.

It's just so ridiculous that you should have all of this information to hand - and be prepared to dig in and have a fight even if it's a strategic one - with a hospital! I just don't understand how we even got here.

I'm sorry your dad/you went through that @EmeraldRoulette

I’m aware that a lot of very horrible things go on with regards to NHS care and a lot of people are badly let down and my heart goes out to anyone who has experienced this. I have also received inadequate care at points in my life and my own cancer care has been imperfect (as well as incredible)
however to say the entire service is not fit for purpose is clearly untrue.
it has been cynically rundown and mismanaged to prepare us for privatisation. The nhs is both amazing and in need of proper funding. It’s not a total shit show, far from it. It’s worth fighting for and this “not fit for purpose” line is dangerous IMO

I’m so sorry to read your thread Evenstar. I hope you are both at home now.

@EmeraldRoulette all my hugs for you. And for you, @Evenstar .

I also don't know why they make it so hard. For me it was 22 years in total so I just - I never knew anything else really. Just woke up every day, well, many times a night too, and straight into fighting fighting dodging swerving arguing begging wangling our way through the worst videogame ever invented, just trying to survive against impossible odds, sneaking through the gaps. It's just bureaucracy. It make good people cut your humanity up into pieces and say, sorry, nothing we can do, it's not on the form.

I am so sick of people trying to gaslight everyone into thinking the NHS is perfect when it so patently is abysmal.

Sadly, results from a Google search page do not translate into action that night at the hospital.

If you compare the percentage of GDP spent on the NHS in the UK with other Western European nations and Japan, the NHS is close to the top for funding. That tends to suggest it's how the money given to the NHS is spent that is the problem. The USA spends far more on healthcare and that tends to suggest the answer isn't privatisation.

Very sorry to read this OP and hope you are both more comfortable at home now. Is it worth talking to your community nurses/palliative care team about an advanced directive/respect form being put in place (if it hasn’t already)? It will help advocate for your husband should a situation like this arise in the future. It can be clearly documented that hospital admissions should be avoided for interventions that will not meaningfully change his outcome but he would accept an admission for antibiotics for an infection for example. Sending you love x

Which is a argument for better use of funds, sure. Not remotely the same as dismissing it out of hand as unfit for purpose...

They always blame pharmacy for the delays in discharge. Pharmacy can only get the medications ready once the prescription is done and sent. Thirty prescriptions arriving together (a few from every ward) all being brought down at 4pm all multi item to be ready for 5pm and often complex (controlled drugs etc). Just easy to blame as not on the ward where relatives can see what is happening.

I hope you got your husband home OP and that he is more comfortable. Sending virtual hugs 💐💐💐

❤️ I hope you & DH home now. Sending much love & strength at this terrible time 🤗

But how can the NHS be fit for purpose if it doesn’t offer satisfactory (if not excellent) healthcare for the whole population, when that is its absolute purpose? It sounds like you got what you needed in your time of need but so many patients don’t. Even the situation with patients left on trolleys in corridors for days is shocking in isolation, before you get to the many, many stories of failures of care and delays and missed opportunities. So no, the NHS is not currently fulfilling its purpose and is not fit for purpose

So it isn’t currently fit for purpose then? Not if all that needs fixing before it can run smoothly

Sorry for lack of updates, we got him home and he is fast asleep and we managed to get the night carer in at short notice so we can all get a night’s sleep and his day care package will start again tomorrow. He is sleeping peacefully and I am sure I will have a better night too. Thank you all for the kind words and support, I haven’t read all the comments but will work through them 💐

So glad you managed to get a private ambulance. Unfortunately I have been in this exact situation, at the same time of year, and they probably would’ve used the bank holiday to delay things even further. The delays, the pointless scans, the type, makes you wonder why actually. I’m sorry you have such a difficult road ahead, you will get through it as impossible as it seems now.

No, it's the social care services that aren't fit for purpose. If they road is so full of potholes you can't drive your car along it, it's not your car, or your driving, that's the problem.

And GPs and hospice care is what the original poster said. And actually I disagree that fixing those would fix the whole system anyway, though it would be a good start!