Since Neil died six weeks ago I wanted to update the forum about the aftermath of his ghastly end of life care which I detailed in our thread 'Nearing the End ' or I think I did.
I don't want any man with Pca and their family or anyone for that matter to go through what we did. I guess I am still fighting for Neil too and my heart is breaking.
After his death, his daughter wrote a detailed complaint on behalf of us both, describing his last hours, the lack of informed nursing and medical care and the fact that we had to tell/ beg them for pain/agitation control,. medical imput, etc.,
I have sent the complaint to my local Prostate Cancer Support Group 'Prospect ' who have been brilliant. Some of the committee are on the local urology evaluation service, fighting for change. They have sent the complaint to the South West Commissioning Group Urology person, local MP, one of the senior urologists who helped found Prospect, etc. The CQC are involved as Neil was classified as a vulnerable person. They have hinted to Becky about compensation but stuff that, all we want is change.
We have been asked to a meeting with the urology lead consultant in Nov, prior to any formal investigations, funny as this guy was Neil's original consultant we think and did absolutely nothing in terms of direct dealing with him but he was involved in Neils original complaint last year. The phrase 'I smell a rat' comes to mind !
We must have a better urology service, I know I still feel a lot of Neil's care with hindsight should have been different and afforded him a better survival time but if we can bring about some change even if it means involving the media then it will be worth it.
Fiona.