I am furious.

[marie souter]

Hi Arlene and your lovely Keith,

Please speak to your assigned macmillan nurse and tell him/her your concerns and fears. They are there to talk to not just to treat. I really re-gained my faith in the NHS when my mom had her first bad bout at home (she refused hospital). She literally kicked ass, she was the one who noticed the mixing of two drugs who should'nt have been mixed and the nurse who did it got a right tongue lashing.

My Macmillan nurse is the one who helped restore my faith, please don't despair and DO COMPLAIN ... so many people are afraid of raising their voice to be heard, but in my experience it makes people sit up and listen. They are so used to talking down to some people part of the problem I had faced initially was being seen as someone who had a voice and was not a hysterical relative but a concerned one. I felt as time went on I had the full respect of the NHS community I dealt with, to the point of any new doctors and nurses coming into our little circle thought I was from a medical background. You absolutely must question if you feel the need to and complain when it is appropriate..the way I see it ... if they don't know they're cocking up someone else is going to suffer at their hands, whether it's a training issue or an incompetence based issue requiring suspension and investigation ... these things 'must' be brought up ... mistakes cost suffering and cost lives ... I truly hope your experience from this point on is much better with regards to medical staff...

hugz n love

marie

xx

[kwaitang]

Thank you for all the advise. I feel I am not the one to cpmplain as I tend to "lose it" when I get emotional or upset.

I will write everything down and ask my sister to come with me when the time is right. She is calm and can put things in a way that I cannot. This is why I have said nothing up to now as I think that my "bull in a china shop" approach, as my sister calls it, would only make things worse.

We haven't got a Macmillon nurse only the contact nurse at the hospital He has been the only comtinuity that we have had. He noticed Keith was swollen up straight away and sent him straight round to the hospital ward whereas we seem to see a different doctor at each check up and they do not know Keith.

I seem to use this forum to let out some of my rage, I hope no one minds.

Arlene.

[Birchen]

Hello Arlene

So very sorry that you are experiencing should bad care during this dreadful time. We to had bad care and made a formal complaint. The hospital concerned tried to deal with over the phone but we were having none of this. Went on to have a meeting with the PCT and consultant, the meeting was recorded and they then sent a cd for us. Hopefully the meeting to result in changes that they have promised. Came to late for us but might help others in the future to receive better care and consideration. We found actual nurses brilliant but they can only give the care they are allowed to and have to answer to the doctors, if one can be found.

Hope everything improves for you.

thinking of you Lyn x

[marie souter]

Hi Arlene,

I found I had more control with 99.9% of moms time being spent there...so I guess I questioned a helluva a lot more than if she woulda bin in hospital..whats's that drug for? Why are you using it now? Is this reaction normal? Can't we change to something else? I've read we can? You get used to all the new drugs, question ALL the time ... I thin its a good idea that you do bring someone who isn't going to go straight for the jugular (my sis is the same) this is where docs/nurses are great at placating hysterical relatives however half the time they spend so much time calming people down, the relatives rarely find out anything useful, you do need a calm person and I think thats a brilliant idea..when you write your list of questions .. please remember .. no question no matter how insignificant you think it is will be a silly question INFACT it could make all the difference to assessing certain side effects of meds or of the cancer .. sometimes it can make that difference.. We only had our contact at the hospital initially as well...We didn't get our macmillan nurse for a while BUT our GP sorted it quicker for us as when I went to see him on my moms behalf .. he was appalled we hadn't seen one yet and had the number for the macmillan nurse for our area .... she rang us within a few days .. (also something you can do btw, get permission to see the doc on your keiths behalf if u need to? of course you need keiths permission to do this)

Hugz n love

Marie

xx

[marie souter]

oooops ... I found I had more control with 99.9% of moms time being spent there (at home)

gave me more control of drugs etc x

[sooty]

So sorry to read the tough time you are going through, my situation was the same "my husbands pancreatic situation" is my forum title, wishing you and Keith all the very best, K