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How to navigate hospital/MacMillan/palliative care

6 replies

minipoodlemum · 18/01/2026 22:23

I live 300 miles away from my mum so am currently doing 4 days a fortnight seeing her every day then coming back to catch up with children, house, dogs etc. She was admitted with severe jaundice which was gallstones but scans revealed stage 4 lung cancer. She is 78. She had an ERCP, they couldn’t remove the stones so put in 2 stents and the jaundice is clearing well, she is eating, drinking and mobile. She knows that the cancer is incurable and she has accepted this - she just wants to be at home and live the rest of her time to the best quality. She is in a gastroenterology ward.

The nurse told me last week she’d be discharged as soon as they were happy with her bloods, which were not stable. A couple of days later they found a shadow on her liver. They want to do more tests and a procedure (I assume a biopsy) and told her she needs to be walking around, eating more and regaining her strength. She has been told that she will be referred to MacMillan for a palliative care plan.

today she was really upset because the consultant said she shouldn’t be walking around, she is very ill and will not be going home without having a carer in place. My dad is very healthy and active and has been doing her washing and keeping the house going, they are very independent and they basically thought a carer would be the next stage, not now.

My dad wants me to help to find out the true picture. Sometimes my mum misses things if it’s a different consultant who doesn’t realise she has to put her hearing aids in.

Has anyone been through similar please? I would be grateful for any advice on what I should be asking, how quickly things move when MacMillan are involved. Does palliative care mean she will have to have a carer and should we be prepared for her to deteriorate quickly? If you saw her now you would only suspect she was poorly because of the jaundice, she is bright, lively and mobile.

OP posts:
Fleetbug · 18/01/2026 22:34

Im so sorry you are going through this. It really sounds like you need the chance to meet up with yr mums consultant and ask as many questions as you want before she leaves hospital. Why not ring the ward manager to arrange this- perhaps with your father there too?
From my experience with (mums) palliative care team they are v supportive and all about the patient’s wishes.
All the best to you and your family

vdbfamily · 18/01/2026 22:36

If the ward has an Occupational therapist, they should be able to tell you what mum can and cannot manage and how much support she will need. If she only needs one person and she and your dad are happy for him to help with what she needs, then she will not need a carer until the needs become too much for your dad. It is their choice when to get a carer involved. Some people prefer for someone other than their partner to help with morning routine and personal care etc. Hope you can find someone sensible to talk to .

Boudy · 18/01/2026 23:00

Hi op. I am sorry to read about your mum. So tough being so far away too re navigating.I am sharing the link for the Marie Curie Support Line. I have experience with them and I reckon they will be able to help you navigate.
Information and support for carers | Marie Curie https://share.google/GCcD9QpP4jORyNBQe

Boudy · 18/01/2026 23:02

They also have heaps of info on their website. But if you have time to call / email or webchat then you may well find them very helpful.

AnnaMagnani · 18/01/2026 23:11

Palliative care doctor here - there should be a phone number for the Hospital Palliative Care team on the hospital website. Or go through switchboard.

Generally I try not to use the descriptor 'Macmillan' as it is fading out of the palliative care world and many teams never had any Macmillan links ever.

Anyway the people you want to speak to are the hospital palliative care team. They are generally going to be much more honest with you about how the situation really is. 'We need your bloods to be more stable' is not a good reason to keep someone in hospital who has a very short prognosis and wants to die at home but is a good reason if more treatment will get you better for many months.

The hospital palliative care team will also be familiar with what support there is in the community and setting her up with the community palliative care team.

minipoodlemum · 19/01/2026 05:34

Thank you all so much for the helpful responses, this is really helpful. I will be back at the hospital tomorrow feeling a bit more informed.

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