Incontinance clinic today, what to ask

[JellyCurls]

DD1 was seeing a continance nurse for 1.5 years for night time incontinance. The nurse was hopeless tried 2 kinds of medicine. 1 that didn't work and made things worse and 1 that DD was allergic too. After a discussion in November she admitted she had never read DDs notes and didn't know she had a brain injury or brain stem problems, she was only treating symptoms.

Today we have an appointment at a new clinic as hopeless nurse has left BUT she has left without leaving any notes so we are truly back at the beginning again.

Any advice on what I need to tell them, what I should ask, what I can get them to check for? DD is dry during day but has frequent accidents, she has ataxic cp, hypermobility & double sleep apnea

Thanks x

Sorry, not sure what to say to the continence nurse but I would make a general point of never assuming anyone has read any notes. Start by giving the new nurse a quick run-through of all your dd difficulties.

I hope the meeting goes well.

If you have time write down a set of notes and hand them over!
Include med history and current symptoms and particularly any correlations you have seen between events in the day and continence.

Stress and incontinence are well documented.

I have seen continence pr0grammes for even quite profoundly disabled kids work on the every 20 minutes, and careful record keeping, and slowly moving out to every half hour etc.

Every hour is recommended sometimes to re-set non disabled adults.

So good progress is possible

Good Luck

Too late for OP, but for anyone else reading this, I'd echo senvet's suggestion of handing over a set of notes summarising the issues and giving recent details for every hospital appointment.

Having had 3 dc with chronic and/or congenital conditions and a dh with multiple health problems I know that all of them ended up with hospital notes the size of a volume of a large encyclopaedia. And I've never accompanied any of them to a hospital appointment where the specialist had time for more than a cursory glance at the notes. A quick easy to read summary meant we didn't have to waste 10 minutes or more explaining all the background.

For the same reason we try to always see our own GP who's known us since the oldest surviving ds was 2 (now 21). It takes so long explaining everything to anyone new that we use up the appointment time before we get to the reason for making it!

Thanks for the replies. New nurse admitted straight away she hadn't read notes as had come over from place they are stored. She did however speak to a Pead (who we have never met) who said no reason for DD to be wet at night.

Have come away with an alarm to try