Nappys , when did you start to have to buy your own????

[jules27]

Hi my son (11) has Downs syndrome and is still in nappy's at night , as he is out of nappys in the day the inncontinence service has given us just 8 weeks to have him out of night nappy's and then if he is not we will have to start paying for them . I don't see him being out by then as its taken me over 11 years to get this far. I was wondering what other health athorities do ,with the night nappy situation . We were allowed free nappy's from 4 years didnt realise there was a limit at night times.I WANT TO TACKLE TEH SITUATION AS MYSELF AND OTHER FRIENDS ARE STRUGGLING WITH THE THOUGHT OF HAVING TO PAY ESPECIALLY AS THEY ARE NOT OF NORMAL PRICE.(OOPS SORRY TO SHOUT )I live in Bed fordshire . Thanks JULES .

our health authority provide them for free, 4 for 24hrs
my ds is 9
hopefully someone with advice will find out for you

they are free here. neighbours get all their incontinance stuff free (3 disabled kids from 15+yrs old). they also get all the used stuff collected as well.

I am sorry to hear you are having this trouble. I know that they are really tight about nappys my friend is in west sussex and has loads of trouble.I am in Brighton and don't!
Can you not see the gp or consultant and get there backing(or maybe a social worker)
IT seems so unfair on you when you have worked so hard to get him dry in the day.I can understand how frustrated and angry you must be feeling.

Thanks for replying, where do you live ??, i need places;what health athority do you come under) so i can start a fight(not really) with these people.It isnt just my family who finds ourselves in this situation , so need information before i start tackling the problem.We only get 5 nappy's per day regardless how old or how poorly the child is.We have no collections eithe r,the nappy's just go into the normal household rubbish. Thanks again .

hertfordshire. neighbours have the yellow bags and a collection every week/fortnight(cant remember which). they have the incontinance sheets etc as well.

sorry I should have said on my earlier reply. I come under Brighton/hove and we get nappies and pull ups(dry nights as I wouldn't use the others) free. I think it's 6 a day. My dd is 10

Our health service is free for daytime, they don't cover nights. I think they allow TWO per day (!!!!). Luckily I managed to train ds1 (or he decided to train himself), thank god, it was costing a fortune.

Buzylizy, I am in Brighton/Hove too and my HV told me I could have nappies or pull-ups but not both at the same time. I shall have to ask about that! Also, I wasn't aware there was a limit because HV just asked me how many I thought I used in a day. Is there any kind of age limit for getting free nappies in Brighton? I must admit I hadn't thought that far ahead as it looks like ds will be in nappies for some time yet. I assumed he would get them as long as he needed them but obviously Jules has found that's not the case. Perhaps like so many things to do with SN it depends on where you live.

Hi Pixel. I think it is because we are trying to toilet train my dd. so I asked for pullups for the daytime. But we need Nappies for long journeys and nighttime. I think as dd has cp and is severely disabled they have accepted that the chances of sucsessfully training arn't that high.
(Saying that she is dry at school but insists on wearing pullups won't do it at home as it is a school thing!!)I haven't had a hv for years so go straight to the incontinece advisor at brighton general.As far as I know there is no upper age limit.(I Know a grown up disabled person who has deliverys)

I can't get them for my son who's almost 6.

Sorry to hear of your problem Jules as I've had difficulties recently with supply of DD's nappies too. I'll spare you the details but they tried to make our system here more "efficient" ie. we were sent cheap nappies which didn't fit & leaked!
All sorted now but I will confess it took months. I had to show that we'd tried all their suggestions and there was a clinical need for my DD to have a certain product. If there was a clinical need they had to supply it.
Clearly 8 weeks is an unrealistic target (for many NT children too I would suggest) and sounds like an admin/bureaucratic target rather then a medical one. You've worked so hard to get him out of nappies by day, the last thing you want to do is pile on the pressure and jeopardise that too. I found my HV very helpful. She requested a new continence assessment so the advisor had to come out to see us and we took it from there. In our area it was the Community Paediatrician who made the initial request for nappies to be supplied. Would it be worth contacting yours for help?

I was very, very persistent and we got there eventually but I was tearing my hair out at times. I kept going as I knew there were others too in a similar position.
Good luck and keep us posted.

Hi Jules, Initially our hv sorted out anything to do with nappies for us, but now she has handed over to ds's school nurse. Is it worth having a word with your ds's school nurse to see if she has any suggestions? She might be able to back you up about how this may jeopardise your ds's hard-won progress.

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Thanks for all the replies. My son does go to a special needs school and they gat as frustrated as i do with the nappy situation. I have spoken to my local incontience service and yes 5 a day is the max and if he is dry in the day , he should be out of nappys by 8 weeks later at night. Ha ha, prehaps she would like to try to get him dry at night. Don't see them getting up every night to take him for a wee, OH GOD!!!!! all those wet beds!!!!!I have spoken to loads of others about this situation and yes we have to pay if they are dry in ther day. I havnt seen my HV since my son was 5 , probably doesnt even have one now. I not sure where to go now. Will keep you posted. thanks jules.

Thanks for all the replies. My son does go to a special needs school and they gat as frustrated as i do with the nappy situation. I have spoken to my local incontience service and yes 5 a day is the max and if he is dry in the day , he should be out of nappys by 8 weeks later at night. Ha ha, prehaps she would like to try to get him dry at night. Don't see them getting up every night to take him for a wee, OH GOD!!!!! all those wet beds!!!!!I have spoken to loads of others about this situation and yes we have to pay if they are dry in ther day. I havnt seen my HV since my son was 5 , probably doesnt even have one now. I not sure where to go now. Will keep you posted. thanks jules.

Thanks for all the replies. My son does go to a special needs school and they gat as frustrated as i do with the nappy situation. I have spoken to my local incontience service and yes 5 a day is the max and if he is dry in the day , he should be out of nappys by 8 weeks later at night. Ha ha, prehaps she would like to try to get him dry at night. Don't see them getting up every night to take him for a wee, OH GOD!!!!! all those wet beds!!!!!I have spoken to loads of others about this situation and yes we have to pay if they are dry in ther day. I havnt seen my HV since my son was 5 , probably doesnt even have one now. I not sure where to go now. Will keep you posted. thanks jules.

Thanks for all the replies. My son does go to a special needs school and they gat as frustrated as i do with the nappy situation. I have spoken to my local incontience service and yes 5 a day is the max and if he is dry in the day , he should be out of nappys by 8 weeks later at night. Ha ha, prehaps she would like to try to get him dry at night. Don't see them getting up every night to take him for a wee, OH GOD!!!!! all those wet beds!!!!!I have spoken to loads of others about this situation and yes we have to pay if they are dry in ther day. I havnt seen my HV since my son was 5 , probably doesnt even have one now. I not sure where to go now. Will keep you posted. thanks jules.

that's mad ... dd (who also has DS) has been out of daytime nappies for nearly a year but still wears them at night, nobody's ever complained.
And I know this is really naughty, but I use the nappies she gets for ds (I am somewhat bitter as they changed the age for free nappies from 3 to 4 a month before dd's 3rd birthday) - nobody ever seems to care.

Jules, this is crazy. I still don't understand why they say he should be out of nappies in 8 weeks. Why? What research/study are they using to back this target up?
I think I would request an appt with your paediatrician to ask for their assistance in dealing with the nappy people.
Also contact the continence service again. If they are so flippin certain it can be done, ask them what they are going to do to support you over the 8 weeks. Are they going to provide you with mattress protectors etc etc? Demand a home visit. Not that you really want their advice but when it fails it will be their failure too and maybe they'll then think of another solution....nappies.

My daughter has sotos syndrome and is still in nappies, both during the day and night. At the moment I have 32 packets of nappies and have now asked for pull-ups as she only wears nappies at night and wears pull-ups during the day (both at home and at school/daycare). I have just received a letter from the incontinence service who provide us with the nappies. They will provide pull ups for 6 months (while actively potty training) but say that, if after 5 months, she has not been successful in being potty trained, I can go back to my health visitor and start getting nappies again.

I live in the London Borough of Sutton.