Go Riven!

[sickofsocalledexperts]

Go Riven! For making every national newspaper with her quotes to David Cameron, and putting the 4-nappy issue high up the political agenda! I used to be in PR , and you would pay a lot of agency fees to get that kind of coverage for an issue! Surely now they will have to take notice!

We ahd the home visit AFM, with DS1 but here they do not classs AS (despite him being highly aggressive) as a disability tso not needing to make provision; the only thing they can offer is parental support absed on need, and my assessment jusst reads 'Highly intelligent and capable aprent' copied and apsted down the form. They did offer a Cm for ds1 paid for by them weekly, but one with toddlers present and ds1 is very aggressive indeed 9regularly knocks me out) so I coudln't accept it.

DS3 is entitled to an assessment and I am working with Carers Support for that, but there is a waiitng list and up to now we have not been a priority as we have alrady been visited for DS1 (before ds3's DX).

Of course, our sit is a bit mroe complex and unusual, but I ahve seen documents sugesting that SW's locally actively discourage ASD famillies accessing their resources becuase there are so many of us and few of them.

Agree w Riven. We have had Social Worker on it, and learning disabilities nurse. 3 and no more, sling your hook.

do you only get 3 r3dh3d? So it is not even a 4 a day rule then?

Each PCT has their own rules, there's no national standard. It's loony - we're in West Surrey so get 3. In East Surrey you get 4. It's entirely arbitrary. As far as I'm aware, bladder capacity is the same both sides of the county.

I am in Kent fwiw. They do have a rule but obviously could not stand the west midlands mother on the phone peestering them and getting too many people involved

Also in our area we swap on what no longer fits between a local sn group and we foten get extras and things, which obviously makes things easier

I posted on the daily mail btw riven (I am larry ) but I don't think people understand that when you have a child with disabilities it hasn't actually ben costed into your life. We are not talking about buying nappies for a toddler (I have one, they are £3 a pack from morrisons) We are talking about poorer products which cost £10+ for the same amount

When I lived in another area we had completely unlimited (though they noted it down so you did not abuse it) and it worked very well

Well done Riven.We have only ever had 3 a day and spend a fortune on buying nappies.This has gone on for years,expecially as we have had to supply school,respite etc.Also if your sn child had digestion problems like many do then you go through loads.At school he got changed very frequently,now he goes to a Day Centre he doesnt seem to get through so many.Another thing is that to collect the giant nappies (and pay)and lug them across town is very tiring and depressingl.You hope you dont bump into someone!But I really wanted to say a very well done to Riven,what a Star!!

Coming very late to this thread as just read my copy of the Sunday Times this morning ... and what day is it ? ah yes Thurs !

Well done Riven, hope you are basking in your media attention, and hope DC is helping you to do something about it.