would you believe it!

I have my first appt for chronic fatigue therapy on Tuesday 21 may.I managed to get a lift there and back,it's a bit of a trek of about 40 minutes by car.The problem i that I jut got my apt at Papworth for sleep study and cpap set up and its on Sunday 19th it's even more of a trek at over an hour! I managed to get a lift there sorted out but it looks like I'll be stuck there as I can't get a lift home! (does anyone know if they have patient transport?) I wish I could drive sometimes!! It says in the bumph that if I need any treatment (which I will because I will need a cpap machine setting up) It may add another 1-2 nights to my stay,this will mean that it will overlap with my chronic fatigue appt! Honesty it's like a full time job trying to organise everything!

12 Replies

  • Hi Amanda, isn't it annoying how everything seems to come at once? I have weeks where I feel as if I'm living in hospital and think it'd be easier to find me a bed than keep getting me to go back and forth! If you contact the patient transport office at Papworth they might be able to arrange transport for you. Your GP should have the number hopefully as until last year they used to do the requesting but now hospitals insist on patients contacting them direct so they can assess their need. Think you might be wise to try and get your chronic fatigue therapy pushed back a bit or you'll be totally stressed out at Papworth. Hope it all goes well x

  • yes i also have the dog due to be groomed! So.................. looks like I'll be cancelling everything then! I had thought of patient transport but wasn't sure if I'd be allowed? I'll ask them when I ring them later.Thanks x

  • Forgo you dogs grooming for a short while and catch a taxi back they will tell you the fare before you go

  • I would but the taxi is £45 and I haven't that sort of money,it had taken me weeks to save up to have the dog groomed,

  • I have managed to get my Drs to sort out patient transport for the return journey,result!

  • The receptionist at my GP booked patient transport for me Papworth weren't very forthcoming on what would make me eligible for patient transport but we got there in the end.I'm taking a good book cause I'll be in for a long wait!

  • Hi hun where do you live? papworth can and do hold clinics in other areas, you could always ask them, they are very helpful. I have had the same and on cpap nippy for years su

  • I have to go to the sleep clinic at papworth and stay overnight so that wont work unfortunately.

  • your G.P should be able to help with transport

  • What therapy do you get for CF...I was't aware there was any treatment...I was diagnosed in 2008 and never had any offer of treatment other than 'pacing' my self......

  • I don't know yet as It would have been my first appointment on Tuesday but I had to postpone it because of going to Papworth.It's a new thing apparently but I'm not sure what it entails.I would imagine that it doesn't involve CBT because I went to the first appointment for that and was told that this CF clinic would be better for me.I only have to attend one face to face appointment then we do the rest on Skype.

  • Ok thanks I thought for a moment they'd found a new treatment but sounds like you'll get advise on how to 'pace' the things you do and how to 'live' your life....hope it works for you....

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