My last admission at UHNS!!

It's been 2 months since i last wrote on my blog!! To say it's been busy, stressful time is pretty much an understatement.  I don't know what's happened to my life in this last few months.  Some things i'm ready to talk about now others i don't think i'll be ready for a long time so you'll have to bare with me if u read this and feel like i'm hiding something, cause I am.

Last time i wrote my blog in December i was telling you i had decided to move my CF Care to Wythenshaw Hospital.  Well the process was very slow, seems admin can't write letters very fast. I hoped it would all be ready so it would be new year new start.  But on 4th Jan Wythenshaw still hadn't recieved the letter and i felt really poorly so i ended up been admitted to Stoke in the new building that the respiratory wards had moved to!

I guess it gave me a chance to check out the new facilities on Ward 233 for myself, all i can say is bigger is not always better, the new respiratory ward has 32 beds for all respiratory patients and 16 of them are side rooms which is a huge inprovement from the 3/4 side rooms we had access to on Ward 79.  The walk to the ward when you're poorly is exhausting, the length of the ward is ridiculous and it's not just the patients who find that, the staff are shattered after the shift, the ward is that big they have two nurses stations and split the staff into two teams to look after 16 beds each.  The rooms are big, probably too big and the ensuite toilets are a definate improvement but they didn't need to be that huge, just a complete waste of space.  With all the space they've wasted they could easily of put a 6 bedded CF unit into the plans.  You can tell it was designed by someone who has never been a nurse and worked on a ward.  The decor makes u feel bit better its clean and fresh and has really large windows, can see for miles and a great view of a34 you can see your visitors coming and watch them park up.

I may sound pretty negative, well i suppose i am, the hospital staff really thought that these new facilities were going to be the answer to what we needed and we'd stop fighting for a CF Unit but it's just made us realise more how much we need one, the staff are now even busier, less time to look after us and less time to really understand the complexity of CF.  All they can do if give u some pills and ivs and they aren't given on time, 10 o'clock ivs are given after midnight most nights, day time more like 4pm than the 2 oclocks.   Now there is more beds, patients don't have to wait as long to get in, there have been up to 9 CF's in at a time since the move in November and the staff just can't cope.  CF Trust guidelines say that you should see a physio twice a day, you're lucky to be seen once.  Most patients are asked to self-medicate because there is one paed cf physio and one adult and they are constantly covering for each other because they have to much time off. Most of us go in hospital and stay there for the extra physio and because we need help, if we were well enough to self medicate wouldn't we be at home!! Yes we would. 

That's a concept they just don't see to get at Stoke, we don't want to be hospital and making that decision to go in is a difficult one, then when your there you know as much as you want to go home you have to stay till they are ready.  There is way to much enphasis put up estimated discharge date everytime you see the consultant and when you tell them you're not ready to go home they tell you "it's not a hotel"!! Well.... i think we know that, the foods crap, they ain't clean, the care isn't what it should be so why else would you want to stay unless you feel like your not well enough to go home. 

I wonder sometimes what goes through the heads of the CF Team at Stoke, I've made complaint after complaint and told them ways they could improve things it just goes in one ear and out the other.  It's not just me my friends there are driven mad by the same uselessness to listen, to change and to do anything about things.  That's why in the end i made my decision to go!

Those 8 days i really felt poorly, normally when i'm in hospital i go home every evening, the luxury of living 6 miles away from the hospital, but i went home twice for a hour or two but it was exhausting.  The staff on Ward 233 are lovely, they do try and it's not their fault, they over worked, under staffed and unable to do their jobs properly at all because of the conditions they have to work in. 

I went home on my IV's but i still wasn't feeling well, i felt a little pushed out but i wanted to go home and look after myself, nothing they were doing for me there, especially when my last two days i stayed for extra physio and didn't see one at all, wasn't any point in being there.  From my hospital bed i had finally sorted my transfer and had an appointment for CF Clinic in Wythenshaw for the 25th Jan.  I was so excited to leave where before i'd actually been quite teary, but to be fair i was sick to death of the crap that came with things there.  I fight every day to stay alive, i shouldn't have to fight a hospital for my care.

Although i've now moved which i'll tell you all about in my next blog, i will still be campaigning and continuing to fundraise for a CF Unit at Stoke, that's for all my friends.  Not everyone will be able to take this opportunity to move hospitals and they deserve so much more.

xxxxxxx