I was going to start a post about nappies too. Have just had an appointment with the school nurse and continence nurse, they are going to sort out nappies for my son, he's also 4 with ASD, I have been told that he will be given 3 nappies per day......... Is the amount dependent on area, 3 nappies to cover 24 hours!!
The MN campaign started I think when David Cameron came for a web-chat and Riven asked about it. He didn't know how many his late son had although IIRC Samantha did.
Three is ludicrous if someone is doubly incontinent especially if they are an older "young" person aged seven or above.
Two years ago I would have been happy to receive any amount of nappies but with DLA being cut / refused it's important to access help where you can. My friend has DLA for her son but has been given a Major Buggy through the OT. I bought DS a large pushchair with the DLA money but now I think perhaps I should have done what she did.
The number of nappies you get does seem to depend on where you live. However, as far as I'm aware the guidlines for PCT's say that there should not be a 'blanket' policy on numbers and each case should be dealt with on individual need. In reality, we know that doesn't happen - but it does at least give you grounds to go back to the PCT and ask for more. It may be however that because your DS is only 4, they are assuming that even if he was NT, he might not be dry at night - so maybe they are only supplying for daytime at the moment - they will use any excuse (We have always had 4 a day for DD - which is adequate - but I wouldn't hesitate to go back and ask for more if we needed them.
still seems to be down to each pct, we've been getting them for dd3 for about 18 months, we get 4 a day, people I've spoken to who have recently been referred get 3 a day, it's been cut back They've also decided not to provide majors anymore, just hoping we don't have any problems with ours!
no majors but you can have a massive, bulky, doesn't fold down so small wheelchair.
even if there was a blanket policy, ok we all know there is but it wouldn't be quite so bad if it wasn't so hard to by extras, you're not getting the benefit of buying in bulk the way the pcts do, if they'd let you order through the continence service and get the discounts they do it would make life easier.
Daughter gets 7/day due to frequent runny poos (sorry TMI) fortunately brother gets 5/day so I can use his if desperate. Mind you I have to store 1000 plus pads as we get 3/monthly delivery. However I am not complaining!!
trace2 I was amazed to get 7 and like your DD can use far more as I said my son gets 5/day so I pinch some of his. I do think it depends on your PCT. If I get desperate friends help out sshh. But i just wish they would sort the diarrhoea out.
I get 8 per day for my dc who's 10. Initially it was 5 but he can poo 4/5 per day so i requested more as it wasnt enough. I was told by continence service to speak to hv who would have to put referral in. After hv put referral in stating ds goes through about 8 per day my supply was upped no problem. When checked online the nappies i get (attends small) are £17 plus p&p, so i could never afford this. My order comes every 8 weeks.
we had meeting with cn was told will only get the 3 a day no matter what her problems and went on to say do you get dla for her cos that should help with paying for um, and she can not wear pamper which was offered she as to have special ones with no chemicals in . will try asking about more and we get 3 months a time
trace2 I feel this is absolute crap (excuse the pun) many friends get DLA whose DC's do need get pads (I have 3 with down syndrome who get allowances, one who gets high rate due to epilepsy) This is not a DLA issue it should based on need. As I have said before our 12yr old was in residential care until he was 5 and cost £5000 per week! Give us this and I am quite sure we would buy our own pads. I am fuming for you.
trace2 have you thought of speaking to your DD's paediatrician or dietician surely if they cannot sort your DD's bowels out they should be supporting you. If your PCT choose expensive pads that is their problem. By the way DD gets Euron not that absorbent but due to frequent changes it is not a problem, DS has Tena. Keep fighting go to the top Cameron if necessary I will be right behind you! May I ask who is your PCT is they should ashamed of themselves. Take care xx
wraith, i never knew these were the most expensive i just assumed it was because of the size ds is 10 and no longer fits normal nappies, however still needs them with sticky tabs on side to keep them on. used to get pampers until they got too small. a pad would be no use as he wouldnt keep it on. i feel really fortunate after reading this thread because i get amount required (for now), with no problem. I do receive dla high rate car & mobility, however even with high rate care as you know there are so many other things needed i could still not afford to buy at £17 per bag. Trace2 i would speak to health visitor and get her to put in referral for more thats what i did and it helped. Hope you get sorted. x
Sorry for not coming back to this earlier. The problems people are having with this service are terrible!
DS' bowel problems are linked to him being autistic and the after-effects of MMR. I have never seen a child so ill. He couldn't even keep water down for a week and if not BF would have ended up sedated and on a drip. So no official record His wonderful healthy and varied diet disappeared never to return.
You don't get help for that, hell, you don't even get a verbal response. No health-care professional will touch the issue.
I hope you all get what you need in terms of incontinence products. It's shameful.