incontinence nurse referral

[elliejjtiny]

DS1 is 9, has AS and has only once been dry at night. He wears pull ups, I can't remember the brand but they are the ones from Tesco for 8-15 year olds. They leak 2-3 times a week on average which usually means me changing all the bedding, including the pillow and duvet.

DH used to wet the bed until he was 15 and he has AS too so I've been following his lead with this. He feels that his bedwetting was badly managed when he was a child and he was put under a lot of pressure and made to feel like a failure. (This was in the 90's so hopefully things will have improved since then).

I filled in DS1's DLA form last week and wrote in it that he was incontinent at night. It hasn't been mentioned to any professionals since he was 6 so I thought I'd better mention it to the GP in passing so that if the DWP ask about it the GP won't say I'm lying. GP offered to do a referral to the continence nurse. I said that I was happy to carry on as we are although if we could get some advice about brands of pull ups that are more absorbent that would be helpful. The GP said we could do this without a full continence assessment and I would get a phone call from the continence nurse. All fine. But yesterday I got a letter giving DS1 an appointment with the continence nurse for a full assessment in 4 weeks time, complete with a chart to record volumes of wee during the day for 2 weeks.

I don't know what to do, Beginning to wish I hadn't said anything on the DLA form tbh. We have to phone and confirm attendance. I don't know whether to phone and cancel, phone, say there's been some crossed wires and ask for advice about more absorbent pull ups. Or phone, confirm our attendance, take a cringing DS1 to the appointment and hope for the best.

Anyone got any advice/experience?

In my experiance you have to do a continence assessment even if you are only going to the nurse for advice, it's a standard form nothing to worry about.

As for making them more absobant, put a reuseable booster in the pullup at the front.

We use tena pants. Very good! No leaks phone tena up and they can advise and send samples but they are not cheap! Also been told if your a water metre you can get your bill capped for washing sheets

www.amazon.co.uk/dp/B00EYYLH9Q/ref=sr_ph?ie=UTF8&qid=1442506920&sr=1&keywords=tena+extra+small

The continence nurse can, after assessment, refer for provision of pullups, nappies, bedpads etc. They can also provide supporting evidence to the council for example to allow a bigger bin, or to the water companies if you are metered (they may offer discounts).

There is usually a limit on supplies but it can save you a fortune.

I would go. Don't panic if you can't record the output, they should understand why not and advise anyway.

Yes, we get an allowance of 4 pull ups day, I think - more than is needed. They are free, and get delivered by Tena for free. Having a disabled child is hard enough - take what help you can get!

Thankyou everyone. I've talked it over with DH and I've phoned and confirmed we will attend the appointment. Just hope they are kind to DS and don't tell him it's his fault for not being dry at night as we have had these kind of comments in the past from various professionals about him not being dry in the day when he was younger and at night more recently. He became dry in the day with only occasional accidents aged 4. I think he will get there at night in his own time, it will just take a bit longer than average.