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!

I'm really sorry about your dad and the situation, it sounds exhausting for you all. I know you want to pull out all the stops to make his wish come true but wouldn't it be more sensible to keep him comfortable where he is with the medical help he's familiar with? I'm thinking about all of you. Travelling and flying when you're feeling ill is bad enough but knowing your dad probably hasn't got much time left surely wouldn't help him at all. If it was a case of flying to a different country for medical treatment that couldn't be provided where he lives and it was life-saving then yes, do it by all means but sadly this isn't the case. The stress of Embassy decisions & waiting for weeks surely is only adding to the stress. I mean well, I wouldn't upset anyone on purpose.

I was on a flight where a person with cancer died due to an embolism. Late stage cancer carries an enormous risk of embolism. She was Sri Lankan and coming back to the UK to access services and to die.

Instead, she caused the flight to be stuck in Muscat for several hours whilst the soldiers debated whether to allow the body off the plane. Her body was carted t all the the passengers ( who were eating dinner) into the toilet for the time being. After several hours of debate the authorities allowed the body off. The costs were absolutely huge as the plane was taken out of action and also everyone was impacted. So will insurance cover the risk of death on the flight that could incur considerable costs?

As for care at home, my dad was cared for at home. It’s a plus 2 job at the end eg lifting onto a commode if they refuse a catheter / nappy pad etc. it’s really gruesome and intense and 24 hours. Constant mopping blood and changing catheters ( end stage) It takes weeks to get a full CHC assessment and get agency staff in. Also the NHS seem incapable of keeping up with the pain so the patches were always too late and lagged behind the intensity of pain. We also found that getting getting medication out of hours was a nightmare and we had to hunt all over our city at 9pm. The chemist that was open with the rare medicine was several miles away. ( things like anti emeretics are not routinely stocked) Hospice st home is also scatty and not available 24/7 with prescriptions etc. We had to wait hours order weekends and nighties to get someone to give the prescription. it’s not all ideal. At first CHC only offer 3 daily visits and you have to appeal to get 24/7 support or do it yourself. My family were on a 24 hour rota for & weeks as even with CHC funding it’s too much for 1 carer. It’s demoralising arguing about care needs whilst your dad is slumped in a chair a week before he was permanently in bed - that’s the brutal reality and the GPs who comment should be ashamed to argue otherwise - we lived it!

I’m really sorry you are going through this. When my father was very unwell in hospital, we tried our best to move him home (in the same city) so he could die there. But he deteriorated so quickly that we didn’t want to risk moving him and him potentially dying in the ambulance. Please be mindful that things can deteriorate very very suddenly at the end and a long journey could be quite traumatic. I wish you all the best for the coming days 💐

I flew home from USA with seriously sick DH. He wasn’t dying but could not walk. Can I just say it was a nightmare for both of us and one I would not wish on anyone. Also, my mother had excellent end of life care at home but was well known to her GP who set it up and connected us to district nurses and the palliative care team at the local hospice. But she was never t in pain and had not had a few days when they did this. It might be easier for you to bring your dad home but you need to Leave your poor dad where he is to die in peace.

It's not nonsense, people do move abroad and not tell their surgery they have. They are still active on the surgery books.

I think that @Ataloss23 is going to come across lots of road blocks. There would need to be a robust plan for repatriation if her DF did die in the flight, etc. However, I can understand that she needs to feel that she did everything she could, and it would be much better for something to make it impossible rather than her simply not trying.

@Ataloss23 this is all so difficult. I hope you get a plan that works.

According to some other posters there is no problem in Scotland and you and I are apparently talking nonsense!

I'm glad someone has said this. I have nursed (and helped to nurse) both my parents and both my in laws at home until they died because home was where they wanted to be. In all cases (parents and in laws hundreds of miles apart and over a span of 20years), we were massively supported by GPs, community nurses, Macmillan nurses etc throughout. It's not inevitable that it's either hospital or in a hospice. None of them wanted that and nor did any of us.

Our local hospice has a hopsice at home service which offers end of life care but is part of hospice services? i appreciate this may not exist in all areas.

I missed your post, and I would be very glad to be wrong and to discover that OP's dad can be helped immediately.

It's very easy for those of us who have been service users rather than providers, to be pessimistic about these things. My DH's palliative care at home was excellent, but I can remember it taking a while to get in place. But I'm in England.

My DF was in hospital with cancer and dementia after a fall (in England). It was obvious that his time was coming to an end. Initially he was going to be sent home with no care package and my elderly DM to deal with. We pushed back on that, then there was a discussion about care home, then nursing home. DM asked about hospice but palliative care team said not that ill yet. He died 2 days later in hospital as no-one could get their act together in time.

Maybe, things are better in Scotland but I wouldn't be putting someone through hours of travel for service like that.

I have always found two burly males delivering a warning quite useful. Especially when one is a 6 ft 4 ins biker wearing black leather and quietly slapping one gloved hand into the palm of the other. Terrified my neighbours.

Wrong thread?

@Ataloss23sending very best wishes. I really hope you can make it work.

Is your father even entitled to NHS care if he’s been living out of the country? Don’t you have to have been resident for a certain amount of time, even if British?

OP's said she has commitments which would prevent staying in the US very long, but otherwise I agree, if only because of the colossal stress and difficulty of the journey. Long haul flights are no joyride for anyone, and in this sad situation I'd personally prioritise what comfort's possible in his settled US home over a less than practical wish, however understandable

I did like, however, a PP's suggestion of "bringing Scotland to him" and would have thought local Scottish associations - of which there are many in the US - would be very happy to help

Will insurance cover the risk of death on the flight that could incur considerable costs?

I agree that's another very valid concern, @Noras. In theory it should be possible if a doctor's signed him off as fit to fly, but frankly I wouldn't want to risk the kind of difficulties insurance companies are so good at and the hideous bills which could follow

I'm sure we can all understand OP's wish to make this possible for her dad, while still thinking - like a PP - that it may be no bad thing if some authority's refusal obliged a rethink

All that can be put in place within 24 hours here. It is possible. I’ve arranged it for patients

That post about the Sri Lankan women coming back to the UK to use the services. What on earth!

Oh believe me, the hospital tried to get carers - 2, twice a day . They sent me home with a loo seat the Sunday before she passed and she had been given a walker - mother never got back out of bed - they were desperately trying to source an air bed for her - it arrived the day before she died

Wednesday SS rang , agreed there was no way she could come home so were going to find a care home within our county to save us the drive to the city every day - there were no beds anywhere . Mum became unresponsive on the Friday and as I say we were extremely lucky that a bed became available on the McMillan unit, even though they didnt think she would make the trolley push to it , and warned me

On the Macmillan unit she was kept pain free. The minute I saw her getting distressed with break through pain, the nurses came in and topped her up

You do not get that pain free death at home. Time the Macmillan/ Marie curie nurses get too you, the break through pain could have been going on for hours, then they have to get medication prescribed and dispensed - at 11 o'clock at night that can mean a drive to the other side of the country for the 24hr pharmacist - and you pray they have it in stock

I want through it with MIL, and Step dad. My next door neighbour went through it with her dad, I went through it with a friend.

NHS led EOL care is a shit show . Not because they dont car - mum did get the best of nursing care, but because they are stretched to the limit. They wanted her home because they wanted the bed - I totally understand that, there was nothing they could have done for mum, but there was no follow on care available and me and DH were like wtf, how can we bring her home when she cant stand to get on a commode and she has explosive bowl movements? Where was the dignity in that?

Im in NI.

Well that's not true. Im sorry you had a bad experience but that's not how it works. Usually a syringe driver is used. If not anticipatory/ just in case meds arw prescribed and issued and kept at home. The district nurses come out to give them. It is indeed possible to have a "good" pain free death at home. Im sorry you had a bad experience. But I have been involved in 100s of deaths at home and almost all have been well managed and dealt with.
Its really irresponsible and daft to assume because you had a bad experience that's what happens in every case.

Happened to my dh too. PAL care consultant said they put too many drugs in the driver. He was so distressed and the nurse just did that stupid upside down smile with the head tilt when I said he’s distressed.

They put 4 drugs in. The consultant said it was 3 max.

Maybe their other eol patients also had the same distress and they were used to seeing it.

You are absolutely correct

I set up syringe drivers daily - they are so useful in keeping people pain free and comfortable and at home with their family if that’s where they’ve chosen to be - if additional medications are needed then our nurses are there pretty quickly.

The max isn’t 3. It all depends on the medications, whether they are compatible with each other and if there is room in the syringe.

i once had a patient with 4 syringe drivers running - done at the request of the palliative care consultant (who is actually published and well renowned within her field)

Aldo a nurse can’t just mix up a concoction of drugs without it being prescribed to go in a syringe drivers - she would have followed the prescription

I actually did it today. Patient rapidly deteriorated. Bed is being delivered in the morning. Carers started this evening. Continence products also provided

It is definitely possible