I’m reaching out as my family is really struggling to get the right support in place for my dad and we are not sure what to do.

My dad has stage four lung cancer which has spread to his lungs and lymph nodes, after nine rounds of chemo (at the age of 81) he became critically unwell with low sodium and nearly died. Due to this his chemo was paused for three months to allow my dad a chance to recover his strength. He has lost a lot of weight over 12kgs and is extremely frail, he walks with a stick, has a catheter, is constantly exhausted, low mood, insomnia, audible breathing, diarrhoea and constipation, and is aware of a feeling in his chest. Despite all of this, he restarted chemotherapy recently as his psa during this period of respite had skyrocketed, he was given 3 months to live, and the chemo, if he could survive it might hold it at bay a little longer. We as a family did not thing he was well enough to endure any more chemo, but ultimately it was my dads decision.

What makes this harder is the lack of support my dad is receiving, my mum and I manage his care, I haven’t worked since July, the district nurses come round once a week, MacMillan nurses phone every fortnight. That’s it. His oncologist told my dad that all the hospices were full to capacity. My dad is registered with the palliative care team, but that’s done through the district nurses?? We don’t have anyone checking him regularly despite his decline and frailty and the symptoms he is dealing with daily. He’s at home and frightened and we feel out of our depth.

I feel he needs proper palliative care now, more frequent visits, symptom management, emotional support. But we don’t know how to get the ball rolling or how to make the system respond? Does anyone have experience with navigating palliative care? Fast tracking home support or getting some proactive involvement from the hospice team? I would deeply appreciate any advice…how do we escalate things, who do we push? What do we say to make sure he gets the help he needs?  Any guidance from anyone who has been through this or any professionals who know how to navigate this would mean the world.

Thank you, sending love and strength