Papworth getting worse

[paulprentice]

well although the inquiry into why I have been overdosing on immunoglobulin for the past 8 years or so , and have been reduced from 100 to 30ml a week subcut is still ongoing.
got a phone call on Monday to admit me for 2 weeks iv antibiotics then yesterday got sent home with steroids, on the way out another consultant looked at me and said where are you going I booked you in for 2 weeks after a multi discipline meeting we held last week??? I then came home, seems to me the lack of communication at Papworth has well and truly broken down I am more confused about my treatment than I was before. sorry needed to vent am not a happy bunny at the moment.

[s162216]

Hi Paul,

It is so frustrating when things like this happen, when I have to go to Addenbrookes occasionally as I'm on holiday from university, I've had appointments made for me to see a consultant and yet received no letter and get a slap on the wrist for not attending! What you describe is just poor communication between departments and the whole immunoglobulin amount situation is to be honest disturbing considering that when this was last discussed on here a few months ago what everyone was having before seemed to be normal along with the rest of us!

I hope that things go better in future for you there and they start communicating better as its just not right for them to do things like you have described, you should always be in the loop about what is happening.

Sam

[paulprentice]

thanks Sam had a phone call to say I dont need to go to clinic today then 2hrs later another to say yes I need to go lol will see what is said then

[sara74]

addenbrookes has been terrible since lisa left!!

[john]

I suppose that what this teaches us is that we just have to check and double check the times and dates that we are expected to be at the hospital, and get it in writing on an appointment card!!!
Also to make absolutely sure we know what has been prescribed for us, and if we are subjected to tests of any kind, make sure we know what the tests are for and ask the nurses to look up the results and tell us if we need to be concerned.
In an ideal world with the proper complement of staffing this wouldn't be necessary, but these are hard times and certainly not ideal. It seems that every time I go into clinic lately another nurse or receptionist is leaving, and no-one is being replaced. "Swingeing cuts " doesn't begin to describe it, and the worse thing is that it demoralises the staff who stay and have to work twice as hard. I feel it's time we patients stopped just being passive and became more pro-active. If we don't comment it's taken as a sign we agree!!

[willo]

Hi all

is't this just the sort of issue that the UK Primary Immunodeficiency Patient Support charity is setup to deal with? If we patients and carers act as a unit surely this is a case of the whole being being greater than the sum of its parts. So, the more people join the greater influence we will have.

I have also had several issues to do with poor communication between different members of my care team. However, I now double check everything and call the relevant depts to make sure they have received the correct info. My care is spread over two health trusts and three hospitals.

Stay well

[dianesistern]

Hi i am a patient at papworth and because things were so bad there i have opted to have my treatment in my home town again they are not experts its not ideal but i feel papworth has gone downhill since Dr Exley stopped treating patients. Diane

[john]

Hi Diane,
How are you?
Happy New Year to you and yours!
Treatment wise I think you're probably wise to opt for something you know rather than to wait until Papworth gets up to speed for you.
How's it being a Nan? Only ask because my niece just had her first baby, a little boy, and because her dad, my brother, lives in New Zealand, we are the stand-in parents - all very exciting!!

[dianesistern]

Hi Happy new year toall of you too, had a few downs lately just found out my partner of four years was a gambling addict and had helped himself to 27k of my savings so waiting for court dates now so hopefully better luck this year, but the birth of Taylor has been a blessing and kept me busy so i dont dwell too much he is a gorgeous little boy and seems to change everyday, i really adore him, hope you have as much fun as stand in grandparents it really makes you look at life differently, hope papworth are treating you a bit better now i was there last tuesday learnto nebulise antibiotics so hopefully this will keep me well. Diane

[john]

Hi Diane, I'm happy that you are getting so much fun out of your new grandson, heavens knows you need that!!
Our little great nephew is called Noah, yes I know, it's an unusual name but apparently it's number 7 in this years pop list (!!!!), and he's a sweet little thing.
He's very long, big hands and feet, and I think we're looking at a future Olympic Swimmer there!! Mind you he would probably compete for New Zealand, 'cos that's where his Mum and Dad come from!!!
I did nebuliser antis for a while a few years ago, and if you don't mind spending the time they do work, or they did for me, so GOOD LUCK with that.
Hope you're coping with all the snow out there in East Anglia, I know you took it the worst over the weekend, we have about 5 inches here in London!!