advice and support for toilet training

[pottynursey]

With all the current cuts in NHS services we are concerned that many families are not being provided with appropriate advice and support to help toilet train children with 'special needs'. Many areas just provide 'free nappies' with no specialist support to assess what the problem is or to implement strategies and resources to help resolve the problem. If you feel that there is lack of appropriate advice and support in your area or you are limited in the amount or type of product you can have then please let me know. We are working with others to ensure children get the service they deserve!

many thanks :-)

I was told by my health visitor who sorted out the free nappies (after she told me she didn't know children with SN got them!) that there is no paediatric continence nurse, they don't exist. Social care have told me they do but a very long waiting list. It's in my daughter's statement to have OT help with toileting but I am having to chase up the OT team constantly.
So yes there is a huge gap and no help. My DD is 4 with ASD and I am struggling to help her learn.

Yes unfortunately that is the message we are getting from around the country - I work for a charity (PromoCon) that provides impartial advice and information re toilet training etc so if you are struggling with the toilet training do give me a ring on 0161 834 2001 we also have a website which has free downloadable booklets - just click on 'publications'and download the ones you want - www.promocon.co.uk :-)

im not saying this as if to worry i hope it helps to know many of us were/have been in same boat i had paediatric nurse visit reg for this when my son was four the stratagies they suggested were all the same things id and prob you have already tried rewards stickers ect ect reading a book to them on the loo even nothing worked they took me off my books after a year as he wasnt improving and they just said oh he will in his own time and worried me sick by saying he should be ok by time hes teen SN DC often do take quite a bit longer and my son was still wearing pull ups at 8 and hes 10 now and still isnt dry at night im hoping hes starting to make a breakthrough as 2 or 3 times lately he woke up and called me to go to the toilet for a wee YAY so fingers crossed but my advice is still as you would any NT DC try not rush them as they will take their time no matter what so could happen anytime no point stressing over it good luck though

pottynursey. This is an issue that was raised by the PCT in my area at a workshop about 4 years ago. Parents and professionals were told that a high
%age (can't remember figure but was staggeringly high) of SN children could be toilet trained with the right support thus saving the PCT vast amounts of money in providing continence products. Chicken and egg situation though - in order to reduce number of children needing continence products they needed to employ/train paediatric continence nurses - obviously they didn't have the money to do that as they were spending it all on continence products.
Surprise surprise, 4 years on the system is still the same - no paediatric continence nurses and a review seems to consist on an annual tick box letter from SN school nurse asking if the product is still suitable for child - but without letting parents know what alternatives are available!

There is a huge problem with the continence service.We do have a paediatric continence nurse but as the nurse i spoke to told me they find it difficult to change anything because the adult service takes presidance over the service.Even the nappies that my 12yr old dd gets are made with adults in mind not children and that is why there a sometimes problems with the products.

I agree with growly, everything is fine up to "toddler" size and then for adults but nothing much in between. It also seems typical that the NHS will provide things to deal with the problem (such as pads) but nothing to help overcome it. I know that for some children there never will be full control, but there are many who with the right help could achieve it and save the NHS money.

i wasnt even told by the nurse i could get the nappies i only found out on here as im fairly newyou would think she would have at least told me that now i believe as he only wears pull ups at night i prob wont get them, and my DH seems to feel there is a stigma attatched he says no dont ask weve paid for them all these years, so whats the best ones as hes almost too big now for the biggest huggies dry night pants ones hes a big lad hes in the ones up to age 15 eventhough hes only 10

starfish totally agree with the fact that the nhs could save money with this but they could also save money by not going after the cheepest product.We had a change in contract in our area and had to have eight 8 nappies a day supplied (they would rather do that than admit that the cheepest are useless) with the old nappies we had half of that!!!!!

Hi bettyboop63 - if your son is only wet at night then he almost certainly has nocturnal enuresis (bed wetting) this is treatable so you need to speak to his school nurse for help to get him dry. In the meantime the pull ups he is in now is the largest childrens size - you would have to get the adult size next - something like the Tena pants you may have seen advertised on the TV although lots of companies sell them - have a look on the web for the cheapest.

Hi bettyboop we use tena (got tena back after fight)my dd has tena slip but tena pants are probably similar to what you are using now.Tena slip are more like a nappy with tapes at the side.We have bought them from a chemist before cost about£14 though or you can order them online but you have to buy three packs i think which is a case.Tena direct will also send you some samples of differant kinds if you want to try before you buy.hth