To try and get my Dad back to the UK so he can die here

[Ataloss23]

I am looking for a bit of support with this, as I don't really know where to start!

My Dad lives in the USA, born in Scotland but moved over in 2019 when he married his wife who he met whilst traveling over there.

18 months ago he was diagnosed with stage 4 pancreatic cancer. He tolerated treatment well, and we have been lucky to get more time with him.

He decided he wanted to move back to Scotland, so he could live out his days here. He sought advice from lawyers and they began the immigration process for his wife, which has been long winded. She has paid all of her fees, including NHS fees and had her embassy interview 9 weeks ago. We have been told it takes up to 12 weeks to get a response.

His treatment over the past few months hasn't gone as well as it has been, and he has taken a real decline this week. I've ended up flying over to America to be with him as we don't know how much time he has left. We are discussing hospice options, and he has said that he would much rather find a way to get back to Scotland, because he still wants to die back home. So I am trying to do everything I can to get him home, but would really appreciate some guidance.

His Dr here has said that he may be able to discharge him for flying, if he feels he would be able to manage the whole flight and we can manage his pain. My concern is how quickly could we access services in the UK? We live quite rurally, so not the same issues for getting access to GP as people in larger populated areas experience. I'm more concerned about how we would access District Nurses, pain relief, stuff like that rather than home support/hospice/care home, as we will be providing his care at home and should manage it all between us.

And regarding the Immigration process - his wife is unable to travel to the UK while immigration clearance is ongoing. Is there a way to expedite this to get him home this week does anyone think? As much as he wants to be here to die, he doesn't want to be here without her. I have plans to phone Immigration in the morning from over here to see what we can do, as I feel this is the biggest challenge we are going to face.

I know this isn't a very common situation, but does anyone have anything similar that they could share with me, or have any professional insight regarding accessing District Nurses or Immigration?

I'm also trying to suss out what services we will need to get him home - private ambulance from the hospital to my house, a hospital bed (can I even get one of these in the house if I don't have access to OTs? Pain management in the community etc. Is there anything else I haven' considered that I need to look into?

I know we are probably chasing something that isn't possible, but I want to make sure I'm doing everything I can to meet his wishes.

Any thoughts or advice would be great please!

My dad also had Hospice “care” at home. Worst experience of my life and I would never choose it again.

You really need to look into services in your area before you commit to anything OP.

I’m sorry for your troubles, sending you all love

Are you sure he's up to the flight? Will he be OK sitting in the seat for so long? Will he need access to treatment that would be hard to give on a plane?

Will the airline accept him as "fit to fly"? It would be tragic and traumatic if he died on the flight.

Many years ago I knew someone who arranged this in reverse - for a relative to fly out of the UK to their home country. It required a lot of paperwork - permissions and certificates from doctors, airlines (I remember there were issues regarding oxygen that were tricky), they hired a private nurse to accompany the relative and a private ambulance for the journey from Yorkshire to Heathrow and there were complicated arrangements at the other end. But in the end the poor relative did not make it home, but died in an office of a staff member at Heathrow.

Sorry you’re in this position, it sounds really rough. Poor dad. Poor you. I do think this sounds like a whole load of admin hassle, stress and risk that is surely the last thing he needs right now. Immigration has to be a headache at the best of times. I’d be worried about the flight and difficulties about getting care set up. It’s hard to get a GP in some places. I like the suggestion of ‘bringing a bit of Scotland home’.

As others have said definitely get an email to your MSP for their caseworkers to read first thing in the morning. This kind of thing will take precedent over pavement parking and nasty neighbours.

Wishing you lots of luck with your plans.

I’m sorry you had that experience but fast track discharged with carers, equipment and support are available. They happen every day. It sounds like your hospital let you and your mum down

Does he still have a valid UK passport? Just because the rules have changed and you now have to enter the UK on your UK passport, not your US one.

I hope you get it sorted x

I'm so sorry OP. I lost my dad through pancreatic cancer. I don't have any advice except to say that I really don't think you have time to sort this x

@Ataloss23 this guide might be helpful?

https://hospiceuk-files-prod.s3.eu-west-2.amazonaws.com/s3fs-public/2022-11/flying_home.pdf

To people questioning funding, @Ataloss23 's DF has the right to NHS care if he has the intention to permanently reside in the UK. Whether that ends up being a few hours, a few days, a few weeks or a few months, is irrelevant.

Don't have to do that now. Anyone is entitled to free NHS GP care. We were not allowed to ask for proof of address when people registered. (Retired NHS GP in Scotland)
And yes if he didn't say when he moved abroad he could still be registered.

Has he earned money outside of the UK that he hasn’t paid UK tax on? If he’s back here beyond a set number of days his estate may be liable for tax on all his overseas earnings. If he’s still has a British passport he should be able to come over and register immediately with a GP and access services. By immediate I mean a matter of weeks to get things set up. His wife should get a tourist visa.

”Sorry for your impending loss
You cant bring him home to die expecting services. , they arent available , its a post code lottery
Mum went into hospital 5th Feb this year, they scanned her that night in A&E and I saw the results. I knew she wasnt coming out, It took the hospital 10 days to call me to see the consultant to get the diagnosis. I asked there and then for hospice care. Got told not end of life, we are getting a care package and discharging. Mum had a driver for a week, a catheter, then that weekend had a heart attack and was bed bound - we are discharging her.
Mum passed 1st March, and we were so very lucky that she spent her last 48hrs on a macmillan unit, because I refused to bring her home,
At home she would have died in agony , there was no carers in place and certainly no macmillan or Marie curie , and without them your hands, and your GP's are tied
Please dont think bringing him home is the best thing for him
Sorry that's not what you want to hear, but that's how the NHS deal with end of life - you have to be very very lucky to get the care and death you want”
Im so sorry to read this. But as you pointed out it is a post code lottery. Many parts of rural Scotland offer excellent EOL care to those dying at home. I know because I work on a daily basis with EOL patients and have friends in other parts of rural Scotland who do the same job. Our hands are not tied if there is no MacMillan or Marie Curie in place we don’t actually have MacMillan nurses and many of our patients don’t have any contact with Marie Curie but still die peacefully at home with excellent support from the community team and the palliative care team based at our local hospital.
I don’t know where you live but NHS England and NHS Scotland are not the same thing and the population number and demographics are completely different in both countries.
The OP needs to speak to her GP and ideally a community nurse to ascertain exactly what help can be offered.

OP please stop reading the rubbish people are writing who clearly know nothing about the workings of NHS Scotland.

Would another option be to pay for a private nursing home for a month, or until you’ve got the NHS side of things sorted?

Good idea

Can he afford to pay for hospice care in the UK.

I’m not an expert at all but I am sure that there is a period of time that has to pass before you can access Nhs services upon re entering the UK.

OP really sorry for what you are going through, its not great & being separated or not where you want to be is really tough.

Hope you can find a resolution.

I would move him to Uk asap

call some palliative care charities to help you. The gp should refer him to palliative care to help manage his pain

I'm very sorry your family is going through this OP. I imagine there is an awful lot of emotion to deal with - especially since you thought he would do so much better and he had a plan to get back to Scotland. It is very hard.

If I were you I would sit down with his wife and him - maybe his wife alone to start with - and work out what your priorities are. If I were in this situation - either as your dad, yourself or his wife, my priority would be managing his pain so this would colour every decision - how would his pain be managed on a 7 hour flight/in the airport/transferring from the airport. how would you manage going to the toilet, eating, nausea etc. Then how will you manage pain in Scotland.

So I'd have a frank conversation with his doctor in the US about the flight back and then talk to the people recommended on here in Scotland - district nurses etc. about pain relief and nursing at home in Scotland. Ask the doctor would he/she do it in similar circumstances if it were their parent.

Honestly, 18 months after a stage 4 pancreatic diagnosis and a sudden downturn, I think this talk of a flight home is a distraction. I'm not sure you are going to manage the trip back right now and I'm pretty sure it would be a hellish experience for all of you if you try it. That's awful I know. I'm so sorry.

I'm afraid so.

When my husband was dying, I assumed that hospice care would be available. It wasn't. There are far, far more people needing it than there are beds available.

Fortunately we had a lot of help to keep him comfortably at home until he died, but I doubt there'll be time to bring all that together for you. This kind of decline tends to be steep and fast. I'm so sorry.

Your dad isn't in the system. The NHS and social care know nothing about him. Just getting him set up with the needed medical information and finding a doctor prepared to take in the responsibility will be time consuming and stressful. Not to mention furnishing your home with a hospital bed, all the equipment for palliative care, and the carers needed.

This is tragic, but I can't see it happening without trauma.

To be honest I wouldn’t pursue this any further. Sometimes you need an outsider to see the situation without emotion. It just seems like you’re chasing his last wish at all costs without standing back and thinking, just because you can do something, should you? He doesn’t seem well enough right now.

I’d see it differently if your dad was healthier and had a longer prognosis but you made it seem like there’s potential for him to pass away imminently such as on the flight. If that occurs, it doesn’t seem in the spirit of what he wants either. Surely he’d be more comfortable in the US.

what I would do is see how this week goes, you said he took a turn for the worse recently. I honestly would only consider flying him to Scotland if his condition improves rather than deteriorates.

plus, if he remains where he is, at least his wife gets to be with him too. If he returns to Scotland, you said she wouldn’t be allowed entry and that you don’t feel comfortable administering the medication etc for him.

i totally get why you want to do this, I just think logistically it’s a major upheaval for him at a critical point where it could potentially do more harm than good. You know what the standard of care is like with his current doctor. You don’t know what the standard of care would be with the currently uninvolved practitioners in Scotland.

OP sorry for your situation. Be prepared. Even residents at end of life can struggle to get care or a care package. Definitely worth checking before you go to more effort that if you can get him back to Scotland, this will be in place. Unfortunately health services are already beyond stretched so there’s a chance you’ll get him back, but the care he receives will be sorely lacking.

Yes. 14 years ago my late husband and I had excellent support so that he could die at home. I doubt that I'd get a fraction of that now. Dvd my DH had been in the palliative system for 18 months, so it was relatively seam-free.

Yes but you have to have proof of residence - see here: https://www.gov.uk/guidance/using-the-nhs-when-you-return-to-live-in-the-uk

In my experience once pancreatic cancer patients start to go downhill it can all deteriorate rather fast. Once you realise it is ‘getting’ too late it has already ‘got’ too late.

I would be very hesitant about trying to do a transatlantic journey with him. It will almost certainly be very miserable and hasten the end.

I can imagine the desire to try to throw everything at it to give him what he wants must be immense. But possibly misguided.
If it was me I would be quite blunt that I thought it was a bad plan and try to help him plan what else is important at this time.

A flight home would be exhausting ( even if you magically got him first class it is still many hours in a car, then a wheelchair, waiting to board etc).
What would he actually get to enjoy of Scotland?

If he is really serious and you want to test it out as in idea, then as a minimum maybe go out for an hour drive to model going to the airport, then an hour pushing him in a wheelchair around a stately home, followed by an hour sitting having lunch in a cafe then an hour drive home again. Get him to walk at least the length of an aircraft to the toilet several times during the outing.
If he is honestly fine and feeling well after all that then maybe consider it. But bearing in mind that with each week that passes he gets weaker, not stronger.

I am so sorry you are in this situation.

Have you looked into whether your Dad will be entitled to NHS care when ordinarily resident abroad? I’m not sure he would be, even with a U.K. Passport.
Even if his immigration were expedited, he would need documentation such as tenancy agreement etc to show he is no longer resident overseas.
so sorry you’re in this situation, and I understand you want to do all you can to fulfil his wishes.
https://www.gov.uk/guidance/using-the-nhs-when-you-return-to-live-in-the-uk