ERIC
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No oxybyutinin in Gloucestershire????

Hi,

We've just seen a Gp ( it took 5 weeks!!!!!) and they said they don't use oxybyutinin in Gloucestershire?????? That's got to be wrong???

My daughter had a bad day and weed 9 times in an 80 minute period after school today. Which I thought might be useful as we were seeing Gp tonight as my hubby took the wet pants to show Her and a sample of urine. I thought they'd help!!!

They said the don't use oxybyutinin in Gloucestershire?!!!! So gave her desmopressin? For daytime wetting????? It's not for that is it? It's for nighttime?

We said we need a urologist referral ( it's been 26 months now that we've tried to get one!!) and they wouldn't refer her.

My hubby showed them the children's continence pathway and apparently they don't follow that either?????

We are livid.

Do we need to move house?! We've only just moved here. Had we stayed in the county we were in we'd have seen a urologist and got oxy.

Anyone in Glos help me please?

17 Replies
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Can you try seeing another GP in that practice, or failing that, change practices? They can't all be so out of touch, surely?

And if you're still getting nowhere, there must be somewhere you can lodge an official complaint if they aren't following accepted diagnostic/treatment pathways? I haven't heard of the child continence pathway, is it from NICE? Will Google it now....

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It's on the Eric website.

Do you know if desmopressin works for daytime? I googled it and it says it's for nighttime. Ok, she wets at night too but daytime needs sorting!!!

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I've only heard of desmopressin used for night wetting, but am obviously no urologist! And I hear a lot on here that urologists advise sorting daytime wetting first, before worrying about night time, so you're right to focus on that first.

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That's what I thought. I will give her the desmopressin. But surely it doesn't replace oxybyutinin? It's different.

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No I wouldn’t use it for day time wetting. When taking it you can drink at all an hour before taking it and for 8 hours after or it can cause fluid retention and other problems.

I’m sure if you ring Eric they will advise.

In Oxfordshire we can get appointments at a paediatric bowel and bladder clinic run by specialist nurses we were referred by the school nurse bypassing the gp.

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Thats very strange, yes my eldest is on desmopressin for nighttime wetting. Its a hormone and in my understanding has absolutely nothing to do with daytime wetting... Can u speak to a different gp? Can you also speak to her teacher, or the school nurse? , ive been speaking to the school nurse for a while and getting nowhere, so I spoke to her teacher and we both rang again on the same day and suddenly they seem willing to help now... Good luck!

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Just to add about desmopressin... It basically turns their kidneys off for 8 hours (reading the info booklet absolutely terrified me and put me off starting it for weeks...) I can't imagine that's safe for daytime as you can't drink ANYTHING when you take it... I'm no Dr or urologist etc... But it doesn't sound right at all...

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That's what I thought.

I won't start it.

It took five weeks to get a Gp appointment. Don't know what to do now!!

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Just looking on ERIC, and the relevant NICE guidelines (https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/11/EICC-guidance-final-document.pdf) clearly state the following:

"Children and young people

It is essential that all children and young people with a bladder or bowel problem have a comprehensive bladder and bowel assessment by appropriately trained staff with the correct treatment and management programme put in place. Underlying bladder or bowel problems can otherwise be missed with potentially dangerous results (Hicks et al 2007). It must be the exception, rather than the rule, that children and young people are provided with containment products."

Surely that is grounds for complaining to "higher powers"? How about asking to see the senior partner at the practice, and quoting the above? It is difficult to argue with NICE guidelines.

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Hello. My son has been given Oxybutynin for daytime wetting and we live in Gloucestershire. I've sent you a PM.

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I would phone ERIC for further advice on this one because as you say there is a Pathway set up for children with daytime wetting and usually Oxybutinin is what they start most kids on (it’s the cheapest as I’ve discovered recently which you could point out!)

Normally you’d see a (School) nurse of some sort and they will give you the advice about no dark drinks, double voiding, completely a urine output chart and increasing their fluids etc

You at entitled to speak to a different GP at your surgery which is what I would do and inthe meanwhile start all the things he I mentioned above which helps get the ball rolling from your part print off the Pathway, request an appointment with a different GP and show them what is normal practice for incontinence in children, explain to the receptionist the first GP have wrong advice and you want a second option and yes it is urgent enough to be seen ASAP or request a phone call appointment!)

Good luck

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We were told to get my son to change his own bed when he wets by the GP.... yes they are that out of touch...

Keep trying different GPS... school nurse sounds a good idea. Sometimes I have found a newly trained GP at a surgery is more keen to help...

Query the drugs supplied. We’ve been given adult medication and all sorts before.

Be a nuisance...

In our area I googled and found a clinic you could self refer to (which when I ask the GP he told me didn’t exist). I left several messages and no-one called me. Fortunately I don’t work so I went there and politely waited and basically made them give my son an appointment.

Good Luck... also what about asking the pharmacist I have found them very helpful?

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Desmopressin is for nightime wetting, for children not producing enough vasopressin.

I'd see another GP!

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Good news!!!! My husband spoke to a senior doctor at the practice today and they agreed desmopressin was not the right drug!!!!

And they want to refer her to urology at last!! And give her oxybyutinin!!!!!

No idea why the one yesterday said she couldn't have it!!! This doctor said he'd speak to her!

Looks like we getting somewhere!!

I think because she's only just turned five, until now nobody ( we've seen lots of people!) was too worried and maybe thought she'd grow out of it.

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Yesterday was particularly bad!! Her input output charts show usually 12-20 wees a day but yesterday she was having loads!! Obviously 20 wees is still loads! 12 is manageable but the urgency is silly. If she needs one it's straight away! Hopefully oxy calms that down.

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Just seen this thread - what an ordeal for you. I guarantee there would be outrage amongst the over 50 female population if it wasn't prescribed!

So glad it is a positive outcome. Good luck with the oxybutynin. It took a while for ours to start working (around 4 weeks before we saw a difference) but hope it does for you. What dose have they started you on? We were advised to start very low (half a tablet morning, half evening) for my then four year old to minimise side effects. We had to increase it get her totally dry.

X

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Hi, we are glos too and were offered oxybutin for my son by the contenence nurse, some drugs can only be started by the hospital, this may be one but I’m not sure? Have you been referred to the continence clinic at the hospital yet?

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