"Palliative nurse and social care"

My 87 year father received an incredible level of palliative care from district nursing team and social care, while suffering from both skin and biliary cancer (Sep to Dec 2020). 

I’d like to thank the teams involved who supported my mum, brother and I care for my dad at home. He had been receiving district nurse visits biweekly to care for skin cancer wound, but this was quickly stepped up when 2 weeks of palliative care were needed before he died at home from cholioangiocarcinoma. 

District nurse team always accessible via phone line, even out of hours. Fitted catheter and syringe driver at weekend. Decisive, respectful and kind team.

Social care worker visits (4 times a day) kicked in quickly and tbh were our heroes as we had no idea how much support they could provide. Huge shout out to Danny and Davey who were wonderful with my dad, esp in their first visit on a Sunday night in late Nov 2020. And taking the time to check on our well-being as well. 

And shout out to on-call nurse who sorted out dads pain relief/syringe driver, with care and respect as quickly as they could; clearly on an extremely busy and challenging day. You made his last day as comfortable and as calm as possible, and we’re hugely grateful as we were utterly lost by then.

Possible improvements to consider for the future: 

1. Better comms between nursing and social care 

2. If there was a better vehicle for sharing with families who are caring for patients at home what to expect (even in very general terms) as we were in shock and were constantly worried we were not doing it “right”. The responsibility was sudden and huge.

3. As in point 1 and 2, I was constantly confused as to where Macmillan nursing fitted in to the jigsaw of care. Anyone I spoke to at Macmillan was very helpful but couldn’t “do” anything, and I’m really not sure if they ever could “do” anything. 

4. I may have missed this, but maybe an up to date leaflet with a “who you can ask for what/about what” in an integrated care plan (general) would help families caring for patients at home. Appreciating that each patient/ situation is unique. 

Lastly, a massive thank you to all involved in the care of my father. He died with dignity at home. And given everyone was operating in extraordinary pandemic conditions, it is hard to express how immensely grateful for their care and support we are. I also know that although my dad was unable to express it at the end,  he had always voiced his massive appreciation to care team along the way.