Not an aibu but I'm desperate!

[sausageface]

Not an Aibu but I really need the traffic on this post in the hope that someone sees it who has some knowledge!

In summary, my mum is in hospital, on the verge of end of life (although not officially there yet, we're living day by day with the dr dangling the carrot that she on the brink).
She's in hospital 200 miles from the rest of the family and even if we get the worst news possible, we want her home near us. She wants to be home near us, she'll always call it home.
I've been told this is possible as long as she's stable (she is) but what's the process? I want to know for sure before I make the call as I don't want to mess it up and lose our chance to get her moved. This is so hugely important to us and I want to do right by her. Thanks for any help!

Will you have input from your local hospice or GP or district nurses?
I imagine that the hospice would be the best source of information.
Very best wishes

Speak to hospice and palliative nurses as soon as you can

When I needed to get DH home to pass the hospital organised everything for me (hospital bed, ambulance etc )

Sorry to hear this OP

When I was in a similar situation with my Nan (though not over that distance) the hospital palliative care social worker was a huge help! Ask.if your hospital has one. If not, they will have a palliative care team who will be able to help.

They organised hospital bed to be put in her home, carers etc.

Wishing you all the best.

@sausageface
The chaplaincy team at the hospital can also liaise with the local hospices and get things going too they're often near EOF wards and are useful to help you

Have you spoken to the hospital? They arranged my mum's transfer to a home (although it was a fairly local move, not as far as yours). It won't be the first time they've done it.

The hospital will have a rapid discharge programme as part of their end of life care provision. I assume she has been referred to the SPCT? If not, why not?

What do you mean ‘not quite end of life care? That process of talking about end of life should start early and can be up to about a year before a person dies.

Ask to speak with a member of the specialist palliative care team at the hospital to talk about timescales and where she might want to go to die. There is a target for hospitals to discharge to people’s preferred place of care.

Check your mother has completed a PEACE or ReSPECT form and talked about what she wants - that is what matters. This is a record of what she wants, a death plan, if you like. It should ask about where she would want to die and what level of treatment she wants to be offered.

The process of transferring isn’t difficult. It’s usua contracted with a private ambulance provider to make the journey.
The administration isn’t difficult either. It’s not uncommon at all.

The obstacles are about where she wants to be - living with relatives locally, in a local nursing home or transferred to a local acute or community hospital. Hospices may not be able to offer a place as they are mainly using inpatient beds for complex symptom management and many have had to reduce the number of beds they have open.
Her SPCT will contact a SPCT in your area to determine what provision there is locally. It is likely to be a nursing home, if no relatives can support her with accommodation.

Thanks so much everyone. I really appreciate all of the advice. It sounds a lot easier than I was expecting. I'd built it up to have a fight on my hands but maybe the stress of everything is making me frazzled (hardest thing I've ever had to deal with by a Mile)

To answer some questions about palliative care etc etc. Mum came to hospital 2.5 weeks ago. Her (non alcohol) liver disease has progressed to a point that it's affecting her kidneys now too and the current treatment is the only treatment that's left to try. If she doesn't respond she will die, there's no back up plan. We of course are hoping this isn't the case but it's not looking too positive (trying to find the right balance of positivity and realism). If she doesn't respond then she will die in hospital they said. So I'm not sure if a hospice is still suitable? Or if it's just about transferring to another hospital. So we don't have a palliative care team or anything assigned to us. I'm assuming this means we should just speak to the dr who's been (kind of) looking after her?

Ask to speak to the palliative care team. They are brilliant.

I'm assuming this means we should just speak to the dr who's been (kind of) looking after her?

I think they are a good place to start. They will know the process.

In a similar situation, but without the distance.
Look up 'Amber Care Bundle', there may be something there which will help.

Definitely ask to be referred to the hospital palliative care team. They will likely be a 9-5 weekdays only team but they will know about and be able to talk you through all the options, and should be able to give you a rough idea of timescales.
Hope you have lots of support around you and remember to take time to look after yourself too x

Although from what you've said it sounds like she is having specialist hospital treatment currently - so moving her out of hospital would mean an end to that treatment which you have said she seems to be responding to. Questions to be asked... Hope you find someone to answer them for you

So the SPCT can start the conversations before ‘the end’ and are experts in symptom control - they actually extend time and quality of remaining life.

It sounds like she’s having active treatment rather than palliation at present, so a hospice wouldn’t usually accept a referral.

Her doctors need the discussion around progression, options and how long she wants active treatment to continue for. They might not be able to treat the liver but they might consider dialysis, for example. She has a right to know the plans.

You might want her to ask them to speak with you. Then you might want to understand what their intentions are. This is the time to talk about moving to a nearer hospital to allow visiting, to support with laundry etc.

Thanks so much for all the help everyone. I wanted to update the post for anyone interested and for anyone looking for the help in the future.

Yes she's still receiving treatment, there's just no where else to go with that treatment. The registrar explained yesterday (which is very different to the chat from the junior dr from the day before) is that we keep going until her body gives up basically. There will be peaks and troughs during the time unless we've already reached the last decline. Holding out for tomorrow to be a peak though. And this is why he said he's not stopping treatment yet. It Could be days but could be as long as months. She has to move into a hospital like you say. I said to him we need her home with us (south that is, not literally in my flat!) I said not only for her as it's where she's always called home but also for me and my brother to have our support network with us too. 200 miles is a long way to be when you just need a hug!

So yes, the registrar has got the details of the contact for the hospital local to me. She's safe to travel so to speak, it's just about the hospital having space to take her. Apparently there is a fast track system in place for people they don't think will live longer than 3 months. I'm not sure if this is country wide but I thought it was worth mentioning for any future readers.

I'm not sure what an SPCT team are but I'm going to ask the registrar this morning about this, thank you. The nurses (on the whole) have been amazingly patient with me and they keep validating that I need to be her voice whilst she isn't able to do it for herself so I'm fighting all the way. We can't change the outcome but we can fight for what she deserves in the meantime.

And for anyone who finds themselves in a similar situation, I'm sorry. This is, by far, the hardest thing I've ever had to deal with x

Sorry. It’s the Specialist Palliative Care Team. All acute hospitals have a group of consultants and clinical nurse specialists plus a couple of more junior doctors who provide expert palliative medicine advice and support to patients and their families.
They offer support, training and advice to other clinical staff across the Trust to try and ensure people get the best death possible through holistic care.

Glad the hospital are trying to sort. Most do have a rapid discharge and transfer process. Accepting hospitals usually prioritise such transfers, but increased Covid19 admissions might cause short delays.

I’m so sorry to hear of your situation, it’s a very tough time and I hope you manage to realise a gentle end in a place of your Mum’s choosing. I used to arrange rapid discharge for people at the end of life and it absolutely can be done, with a clear plan and someone to lead the coordination.

The first thing I will say is to be aware that you may need to cover the costs for some things which would otherwise be free in the hospital’s local area. The local ambulance contract probably won’t cover out of area discharge and so you may need to pay for a private ambulance. I’m not saying this to be negative, just to make you aware of the situation.

As PP have said, the hospital will have a discharge team, and most will have rapid discharge arrangements for terminally ill people so these are the people to help you. I’d try to speak to them this morning if you can.

A rough plan will look something like this.

A) Where is Mum going?

B) What equipment support is needed? If she were to go home or a private residence the availability of equipment will depend upon what is available in the local area. Ie you may need a hospital bed and commode. If you need something that isn’t easily available, you may wish to consider purchasing it.

C) When can she go? This will depend on whether a hospice or home has availability, or in the case of discharge home, when any equipment can be arranged.

D) have medics agreed Mum is end of life and willing to support transfer or discharge? It’s not unusual for medics to be on a different page here, but if they are, the discharge team will be able to advocate for you and -trust me - are very experienced at it.

E) are there costs to pay at the new venue? For home discharge this would be the package of care, for a nursing home the fees, for a hospice an out of area contract. Again the dis team will be familiar with all of this, but essentially they need the cost and start date and will then need to get funding agreed. In England costs would usually be covered and there will be a local process to agree quickly - the same day. Once this is agreed the contract can be set up.

F) Transport - as above, this might need to be funded by you as a family if it’s Out of Area and will obviously need to be booked.

G) once date agreed and transport arranged what else? The discharge team will arrange medication, letters etc, but talk to them about anything else that is needed.

Good Luck. I hope you are successful and that it goes well.