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Hi Laura, its so hard when you are being let down by the system. It sounds like your mum should not have been duscgarged without support in place.

Do make a fuss, do get in touch with hospice again. I framed it to my husband that I wanted support for me and he agreed and was then glad he did. They were great.

Do you have a canccer nurse specialist, they can be there to listen to you. 

There is also Mcmillan on the end of the phone although im not sure over the bank holiday. 

Hi Laura

My Mum died on Tuesday in hospital (but I keep returning to these forums as they've been a crutch to me since she was diagnosed in mid-January). But I was in your position for a while - a sense we'd been abandoned by the system. I felt I had to keep making a fuss. 

All I can say is that everything changed when the hospice nurses got involved - I feel they fill in the gaps you fall through when you're trying to deal with all the other healthcare professionals. Malengwa's suggestion is a good one - can you frame it as if you're seeking support for yourself and your aunt? 

I can't speak highly enough of the hospice nurse - she liaised with the hospital, GP and medical equipment company, plus organised sitters for Mum. She opened doors I couldn't/didn't know how to access myself. She helped mum feel calmer and more in control of her last few weeks, and she's remained in touch with me to give me support. There was never any question of Mum going into the hospice itself - they have so few beds - but their community service suited us well. 

Please, do what you can to convince your Mum about some form of hospice help. I think she'll really appreciate it.

This is a rollercoaster ride you're on, there will be days of high hopes and days of utter despair. So any support you can get to guide you and the family through, grab it! 

When my husband was discharged from hospital. He hadn't been referred to district nurses for his syringe driver to be topped up..I only found out when the alarms went off on it & there was no sign of them. I rang & I was told no referral hadnt been made & I had to ring the ward to get it sorted so by the time the nurses came out he had been without his morphine for over 4 hours. I should have known this would happen as the nurse was hopeless. She tipped the trolley full of his Jevity & meds over in the hospital car park before he even got to the car!!

I’m so sorry to hear about your mom & I’m glad you keep posting. I hope posting helps you as much as it helps us who are going through it. 

It gives me hope hearing about the macmillan nurses, my mom and I had a good chat today & she’s thinking about it.

I took the advice from here and framed it that way so I think we might get there.

Look after yourself, I’m thinking of you and hope you’re doing okay. x

Omg that sounds a nightmare! I do worry for the people who don’t have family/friends like us in their corner making sure the care happens as it should. 

I hope you’re doing okay. Keep fighting. 

Thank you for your suggestion, I did approach it that way & she’s thinking about it. Mom did agree to evening carers to help her safely get to bed so I’m hoping that helps too. x

Your mum should really be on the GSF (Gold Standard Framework) which cancer patients especially terminal patients should be on. I would mention this to whoever you manage to speak to.  Its a bit hit & miss though. My hubby's palliative nurse explained it as being a sort of computer system where everyone who is involved in the care are able to see what treatment the patient is on & read any notes. Whenever I had to speak to the gp receptionists about my husbands care( which was almost every day) I used to quote GSF & they would jump to attention!! The amount of times I had to fight for them to prescribe the drugs that the hospital or palliative team had prescribed was ridiculous they wanted me to literally jump through hoops to get them. You have to mither & complain to get anywhere these days & this shouldn't be the case. I often used to say to our palliative team how would they feel if it was a member of their family being treated so badly by the system.