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!

Another thing to consider is how exhausting the journey (getting to/from and around the airports as well as the flight) will be, particularly if he is in pain and finds sitting in one position uncomfortable. If they're northeast that's slightly less daunting, Florida way or west coast and that's a long flight.

I hope you manage to work something out and the time he has left is as good as it can possibly be.

Please check if he would be entitled to NHS care. Living overseas and not paying UK taxes can remove the right to care as this is based on residency not nationality. You could potentially face a large bill at a time you are grieving

What a hard situation. I lost a dear relative to that horrible cancer and know he has done amazingly well to get this far.
Another one saying forget the spouse visa. Contact the visa section and explain plans have changed and ask for an ETA. Or better. Help him accept the travel will be very hard to arrange with insurance etc and travel to see him instead. Take things from home.
I wish you all the best.

I'm sorry that you find yourself in this situation op. I think someone needs to tell your dad that this is a silly idea.-

I'm a community nurse, I work in Scotland. Firstly register with a local GP as soon as he arrives here and ask for a referral to the community nurses most surgeries have community nurses liked to their specific surgery and they should be able to come out and assess your father within 48 hours (unless you are in an exceedingly remote location) and an urgent referral to the palliative care team. I can assess a patient, order a patient a hospital bed which if available will be delivered the next day, an air mattress, commode etc. I also liaise with the palliative team, the GP and other service e, g. dieticians. Personal care in Scotland is free and is likely as its time crucial to be provided by CTAC if your father is EOL.
I work for the NHS; which means free care at the point of delivery and according to need, we do not question if a patient is entitled to care, what your nationality etc or if you've recently moved to Scotland from the US or Mars. If your father needs help he will get it no questions asked.

When my dad needed a hospice, there were no spaces available. A friend's dad had been a day patient at a hospice and they offered him a full time place eventually. But my dad got ill really suddenly. He needed a place right away and there was nothing. He was accommodated in an NHS facility after a few weeks in hospital and he was extremely lucky to get it.

My brother was in a similar situation. There were so many what ifs. I told him that it wasn't possible ( it might have been possible but the costs were spiralling). Once I said that he relaxed and died at home.

I think the idea of "bringing Scotland to him" is a good one. Maybe contact some of the Scottish/American associations who might point the way. The American Scottish Foundation is one, the Chicago Scots another and there are more.

Without wishing to judge your motives at all, I think what you are all proposing is quite ambitious and comes from a good place, but is not necessarily an achievable one.

I'd speak to the medical team again before deciding anything. It may not be in anyone's best interests to do it the way you are proposing at the moment. If things improved maybe, but not until you have a proper plan in place in Scotland before he arrives.

I am sorry for you all, it is a terrible time and sometimes grief and worry can result in rash decisions out of pure love and worry. Take care of yourselves.

my father died at home recently, the community palliative team were excellent and came once a day - and any time we called them (day or night). England not Scotland but he also had three times a day carers for his personal care, which was free for three months (he died before they were up).

The hospital bed and other home equipment was also all free, the nurses requested what he needed and it was delivered quickly and set up by professionals. The company also took it away at the end.

The last few weeks were very hard and my mum, sibling and I were with him around the clock, but we didn’t have to administer medicines etc.

I hope this has reassured you a bit as to what is available!

Best of luck to you in getting it sorted and being able to honour your dad’s wishes, and my sincere condolences for the difficult situation you’re facing.

I agree. My mum only got a place because someone pulled some strings.
Do not rely on hospice places they are massively underfunded

No advice, but wanted to wish you, your dad and his wife the best. I really hope they can both get to Scotland asap.

If you’re coming back to live in the U.K. on a permanent basis rather than popping in for treatment then returning to a foreign country, you qualify for treatment.

@Ataloss23 hospice care is incredibly difficult to get

Also, is he fit to fly? Would the airlines take him? Or are you planning some kind of private flight?

given all the things that you would need to sort out here, I don't think it's a good idea.

everything would be coordinated through a doctor here and I'm presuming he doesn't have one here?

I don't know why everyone keeps going on about hospice places. End of life care at home is nothing to do with hospices.

I’d say start with the most local Scottish cancer charity and or hospice to where your dad will be and go from there. Best of luck x

This post, and the one from @BurnoutGP are what you are looking for OP.

I do think there are substantial differences between England and Scotland, so the info from @tiredwardsister should be particularly relevant.

I do think it’s very kind of everyone on the thread to post their experiences.

You are doing a wonderful thing for your dad, but do try to recognise that some of it might be out of your control

If there is a possibility that setting up hospice care in Scotland including access to controlled pain medication could be delayed because of his relocating, I wouldn't move him myself. It really needs to be in place before he flies.

Ask his oncologist if he's going to be able to fly however many hours the flight is and is this plan realistic and doable. It's going to be really hard on him. He might need oxygen because of the cabin pressure if he's got lung involvement.

I personally would not risk someone dying of cancer not being able to access pain medication. I also think he's really going to want his wife there.

I'm sorry you're in this situation.

TeaPot496
I don't know why everyone keeps going on about hospice places. End of life care at home is nothing to do with hospices.

The nurses are sent through the hospices in a lot of cases/ have connections there. They also help with home equipment and education. My dad was at home but we went through the local hospice and my friends dad was the same

Partly because OP mentioned it

And in my case, partly because we would not have been able to manage EOL care at home with my dad. Obviously, it depends on the patient.

In Scotland?

End of life care at home is provided by the GP and district nurses where I am.

She specifically said they don’t want hospice care but clearly many posters hear ‘die’ and immediately think ‘hospice’. People have been dying at home since forever. It may not be right for some people and families but that isn’t a reason to medicalise death for everyone.

Just to add in my extensive experience many parts of rural Scotland have very limited access to hospices and your “local hospice” can easily be a 3 hour drive from your home. Many patients wish to die in a hospice bed but end up dying either in an acute bed in a local hospital because no hospice bed is available we for example only have 6 hospice beds for a population of over 150 000 or some may die in a bed in a cottage hospital. The other option assuming symptoms can be effectively managed is dying at home, I work daily with patients and their families who wish to die at home and know of others who do the same in other rural areas. We go out of our way to support both the person dying and their loved ones as well.

Op have you checked that an airline would be willing to take him?

No one who is palliative will not be able to access pain medication or end of life care I assure you.
GP Partner of almost 30 years.

^This in conjunction with the palliative care team who advise about syringe driver doses etc. (I’m writing as a community nurse working in rural Scotland).