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Here are some suggested organisations that offer expert advice on SN.

Nappies in Nottingham

(14 Posts)
monstermansmum Tue 16-Aug-11 18:15:10

Hi all, I know this was discussed sometime ago but I cant find the relevant threads...a friend has just been told that her daughter is NOT entitled to incontinence products. Aged 4, incontinent x 2, SLD, diagnosed with a recognised neurogenetic disorder, non verbal and uses a wheelchair-any advice from any mums in Notts area-have they changed their criteria so drastically? Does she have to be older? We get 4 a day from age 4 where I live. Thanks

growlybear Tue 16-Aug-11 19:01:38

Hi monstermanmum i know that all areas are differant but i would think at 4 they would be old enough.Does your friend have a health visitor or special needs nurse?We have had huge problems with continence service in the past and know just how difficult they can be.

monstermansmum Tue 16-Aug-11 19:08:11

she is under all the right people, attends a special school, sees neurologist etc etc, just been told that she isnt entitled. I cant understand why as her dd has the same condition as my ds-Angelman Syndrome, and will probably never be fully toilet trained. Just wondered if they had raised the age where they accept them into the continence service?

growlybear Tue 16-Aug-11 19:26:27

My dd was tested for angelmans but it turned out to be Retts so kind of know where you are coming from.Has she tried asking them why her dd has been turned down.

lovethecake Tue 16-Aug-11 20:15:20

Hi Monstermansmum,
I was interested to read your comments.i have had problems with incontinence service,but like growlybear my dd has rett syndrome.have you had a test for Angelman syndrome? your dd should receive everything that is entitled to her even from as early as four,have you got a social worker?you must think at the age of four children are trained and attend school full time,if your dd is showing signs of problems then you are entitled.

monstermansmum Tue 16-Aug-11 20:23:15

hi lovethecake. yes my ds has Angelman Syndrome but we live in Wales-never really had problems with the continence team tbh. My friend lives in nottinghamshire, her daughter is younger than my son but has been told she is not entitled to the service for some reason. I just wondered if any mums had been told the same from Notts L/A.

lovethecake Tue 16-Aug-11 20:31:55

its nice to talk,i also live in wales,do you have the incontinence for your ds now,as i am having big problems,with the change of products,what make do you have,ours have changed from Tena to Euron.

lovethecake Tue 16-Aug-11 20:33:57

what part of wales ?

monstermansmum Tue 16-Aug-11 22:45:05

Caernarfon-was on Anglesey for year-awful awful place!!! very beautiful but crap for services. Our nappies are molicare (I think) they are quite good-we used to to have Tena-the ones we get now are ok. Where are you lovethecake?

davidsotherhalf Wed 17-Aug-11 09:31:49

hi we moved away from nottingham a few yrs ago, we used childrens centre at city hospital campus, they have an advice centre so could help your friend to get what she needs, they are very nice people who run it, and if she is near enough could drop and get help/forms if needed, and get support for getting nappies etc, hth

MugglesandLuna Wed 17-Aug-11 11:27:14

Well we have DS who is 4.5 and we have a nappy assessment on Monday. We live in Nottinghamshire. Our Paed has referred us, but its about size I think as he is in 5+ pampers now and thats the largest I can buy.

I agree that the Childrens Development Centre at the City Hospital are good if she lives in the city. If they cant help I would definately be getting onto an MP. We have Vernon Coaker here is is v. good for things like that.

wraith Wed 17-Aug-11 20:25:00

if they refuse there is a website which sells libero size 6/7 bmsupplies.co.uk

BlueArmyGirl Thu 18-Aug-11 20:48:40

The age criteria has just changed in our local PCT from 4 to 5. Its seems to reflect a general change in the social construct of the age at which it is considered acceptable to still be in nappies. Where as not so many years ago most children were trained between 2 and 3, it is now much more common/ 'the norm' for 3-4 year olds (without any difficulties/SN) to not have acheived continence.

lovethecake Thu 18-Aug-11 21:01:01

We are in south wales,nhs have changed from tena to euron ontex,is ther anyone out there that has these products for there disabled child,i would like to know your thoughts on this company.

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