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Trinity Hospice 2015-11-23 Person 3 5 0

My father chose to be cared for at home for the last few days of his life, having been diagnosed with liver cancer and his condition worsened dramatically. I live some distance away so my mother cared for him alone for most of this time, with the excellent help from hospice staff and district nurses. I am glad that he was able to die in his own bed, so it feels terrible to be criticising the service, but for the sake of others, I feel I should make these comments. The main problems arose from the sometimes poor co-ordination between the hospice service, the doctors and the district nurses, and the availability of the district nurses. I know the nurses are very busy, but he was in dire need of pain relief on his last day and the pain relief never arrived. We phoned and phoned, but the nurses were waiting for a doctor to sign the prescription for the pain relief which I think was a higher dose of morphine. The nurses ordered the morphine at about 10.30am, but it never came, and my mother and I spent the last hours of my father's life trying to keep him comfortable, constantly helping him to shift position in the bed, but it was obvious he was in a great deal of pain and discomfort. He died at 4.15pm, having never received the pain relief he needed. The hospice nurse who visited at about noon was excellent, but she couldn't administer the morphine - it hadn't arrived, and I think she would have had to wait until the nurses brought it anyway. But I'm glad my mother was not in the room when my father was begging for the hospice nurse to kill him. I don't blame anyone, but I feel that my father deserved a little more peace in his final hours. Instead he was very aware and awake and in great distress until the very end. To make matters worse, we had great trouble getting the notification of death from the doctor who I think was based at the Bispham branch of Glenroyd. Frankly, the doctor was quite rude to my mother over the phone, when my mother said in a very polite and calm manner that she didn't have a car so she wouldn't be able to collect the notification of death from the Bispham surgery, and asked very nicely if there was any way we could collect the papers from the Whitegate Drive surgery which was close enough for us to walk to. This was unnecessary and upsetting at a terrible time. Surely there must be a better way of doing this? Shortly after my father's death, we kept getting calls and visits from social services etc telling us they would be delivering equipment etc that he would have needed if he was still alive. It would have been better if all services could have been informed quickly of his death, so we didn't keep having people at the door and on the phone, and us having to keep repeating that he had died. Also, the occupational health service don't collect the commodes etc that he never used, so we now have equipment in my mother's house unused, unopened, and left to my mother to sort out. It seems a waste, and also a horrible reminder that he died so quickly. I think Hospice at Home is a great idea, and I applaud the staff for all their wonderful efforts. A little better co-ordination across the services would help, that's all I'm saying. Thank you.