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emmap

Registered: Oct 26, 2007
Posts: 7
Reply with quote  #1 
Hi all

I had been having bladder instills of uracyst pretty much each month (following a per week for 6 weeks) for about a year. I found them to be wonderful and really changed my life around.

However at my latest appointment my consultant informed me that I would not be entitled to anymore as the nhs only funds 10 instills.

This seems crazy to me as now I have stopped the pain and frequency has returned.

The instills work for me - to the point that I do not see any need for me to be put on anything stronger.

However I am now left in a position where I am being told that I can't have anymore treatment as the nhs only cover so many?!?

Has anyone else experienced this? Is there a way to buy the instill privately and self administer?

It seems so devastating that I have found something that works but am being told 'no more' and being sent away for the symptoms to flare back to how they were previously.

It's heartbreaking!!!

Many thanks

Emma
ModeratorJen

Moderator
Registered: Dec 11, 2011
Posts: 419
Reply with quote  #2 
Perhaps you could try a different hospital in another trust? Personally in my area (East Kent) there is no cap on the amount of instils - I've been having them on a weekly then fortnightly then monthly basis for at least 6 months.

I'm in a horrendous flair at present so I am back to weekly treatments and I've been told I can have as many as I need for as long as I need them. I do have the worlds greatest consultant and specialist nurse who fight tooth and nail for their patients and I think makes the difference. It's a shame their aren't more amazing professionals like them in the IC world. I call them my personal super Hero's as without them I think I would have given up and lost the will to fight this awful disease (sorry I'm not usually so negative - I'm struggling with the pain atm - sorry xx).
abi

Registered: Jan 13, 2004
Posts: 31
Reply with quote  #3 
Hi Emma,

Ask your GP to refer you to another hospital. You can search online for urologists in different areas and then ask your GP to refer you to that specific hospital. You could try and fight the case against your current hospital if you wanted too, not sure how easy it would be.

Good luck, we shouldn't have these struggles on top of coping with IC.

Best wishes, Abi
X
Posie

Registered: March 23, 2013
Posts: 4
Reply with quote  #4 
Hi Emma,

I know this thread started a while ago, but did you have any luck with getting more instills?  I have only just started on Instills (Cystistat) and am allowd only 6 - 4 weekly then 2 a month apart. I didn't have much (if any) effect from it yet and asked if I could have the 6 together and then wait and see, but they said no!

I do hope you were successful!

Posie x

Mc2203

Registered: Sept 15, 2010
Posts: 73
Reply with quote  #5 
Hi Emma I too have great success with Uracyst- I had them on NHS for 18months. Then my uro said 'ok time to come off them' I was like 'what?!?' He said the course is generally 1-1.5 years long, that I was being discharged & if symptoms came back I could get rereferred to him again to have them again.. after feeling so well Ididnt want to go backwards so begged him for a private prescription to do them at home & he said yes!I now get them on a private prescription my consultant writes it for me the box of instills come in 4 so I've just got 2 boxes meaning 8 treatments which if I instill every 12 weeks which I have been doing for the past 6 months anyway..i was nervous going from monthly to 3 monthly but have been fine.. My instills should last 2 years as I have 8 treatments- (lloyds pharmacy add a dispension fee) making them very expensive but hey they have worked miracles for me & as they will last 2 years I suppose its not too bad...the nurses showed me how to do the treatments/self cath & although I did prefer getting them done at hospital, I don't mind doing them at home. Send me a private message if you want more info about prices ect & how I order them
Sarah x
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