As some of you know,I have been having problems with the district nurses and my doctor is not much better. Being having conversations with him this week,to ask what the plan is now to manage S's bowels. Since the DN's have far more needy patients than S! Basically he told me, that neither he or the District nurses are there to look after people with long term conditions! "It's up to the patients family to arrange nursing care if they need it". So I asked if that meant I had to hire a private nurse to look after S,he said YES! Once patients reach this stage, they ought to be in a nursing home, that's what they are for!!!!
Spitting feathers doesn't really do the trick! My daughter had already put in an official complaint about the DN's and the lack of support from my GP, this was before this conversation. I have spoken to our CHC support team, she is furious, paying for private nursing is NOT their remit, that's what the NHS is for.
I just need someone to help S use his bowels, is that such a hard task? The doctor asked ME, what he should prescribe! After 7 years, or what ever, me who has no medical training has to tell a doctor what medication to give!!!! Everything he was suggesting, needed a large glass of water! What part of S not being able to swallow liquids, does he not understand!!!
All my hard work, trying to give S as normal life as possible, until now is going down the drain. Whether me or S like it, he is probably going to end up in a nursing home, far sooner than needs be, because the doctor can't be bothered to come and talk to us, look in his precious drugs bible, read up about PSP, to find the best solution for a man who bowels are packing in!!! Surely S is not the first person in the world this has happened too, other illnesses must have the same problem!
I don't know whether to laugh or cry, the situation is just beyond belief. I think I must have lost the plot, this surely isn't happening, but each time I talk to the GP, I realise, no, I am NOT imagining it!!!
What I want to know is, what are they doing with people, who haven't got family members to fight for them? who IS looking after people with long term conditions, like PSP? Or is there some secret pill that is slipped into someone's coffee, once they become a nuisance!!! Don't worry, next time I speak to the doctor, I will ask!!!!!!!
Please, if someone is reading this page for the first time, don't think this is the norm! It can't be! It just can't be!!!!
Lots of love from a very tired, frustrated and extremely tearful