I cannot beleive although people have told me how poor the care from NHS and cancer services can be and how much you have to fight for a bit of dignity.
Yesterday I had a 20 minutes non-conversation with a speicialist worker in a specialist cancer hospital with her telling me how many calls they had - I pointed out I wasn't interested in her workload but they had promise dsomeone would call round and this hadn't happened and wasn't going to according to her - but they hadn't bothered telling us this!! Now I have just come home from the hospital where me and my family have spent many hours trying to achieve a basic standard of care for my dad. Our first success afer a few hours of my dad needing the commode every 10 mins or so was that finally they gave him a commode of his own 'although there was only one for the ward'. We have also after him being in there over 24 hours got them to give him his sedatives and allow him to sleep. Also they seem to be saying that now they have got hold of him (admitted as an emergency yesterday) that as he is getting a 'standard' of care he will not be priority for a hospice bed tomorrow - this is so unbelievable - if he doesn't get a bed tomorrow we aim to bring him home (he is somehat aware of what is going on and it is difficult for us not to show our distress - i.e. crying in front of him) and hope they put care in then he will have priority for a hospice bed. All along it has been awful from late and mis diagnisis to everyone referrring to Macmillan - although we would not know a Macmillan nurse if we fell over one! I cannot believe that a man who belives and has worked on behalf of NHS services for most of his adult life will end his life in such an undignified and unlooked after way. That my mum receives no support from the agencies - that all we have is a few grip handles (social services) pretty useless when you can't even get out of bed to get on a commode without help from your wife and grown up kids. I am just so angry and can't even grieve because each day is a battle. We are articulate, polite, desperate but still only winning 'little' battles. The NHS world comes to a standstill at weekend sadly the spread of cancer doesn't. Apparently even if we had a Macmillan nurse - they don't work at weekendseither except maybe in extrme circumstances. I cannot understand how this has happened we live in a major city with easy access to all specialist services but we may as well live in a hamlet miles from the nearest phone box for all the good it has done my dad.
I don't know why I am writing this on here - perhaps get it out of my systtem perhaps to warn others - I don't know. I just keep crying for the state of the NHS and rubbish care - I want to cry because I am losing my dad - want to concentrate on that not worrying about tomorrows battle.
