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!

Tim Dowling's report later (pic is from Dave's first visit though)

well done riven for getting it out there.

feel I am a bit late ... but well done riven!

it is on your profile

ooh Queen Riven!!
I usually get the Sunday Times but they had sold out today. Wonder if the Riven fan club had bought all the copies!
Which section please and will go see if I can read it online.

Here
Though the print version has a better picture of Justine perched across an armchair.

I think its brilliant that this has made all the papers Riven so hopefully will be addressed. You should be very proud of yourself.
Riven-the voice of a nation!

I am pushing to get nappies on prescripton at the moment for DS Riven and was completely unawares until I read your question that you only get four a day! It's disgusting. {Slaps riven hard on the back in a good on ya kind of way}.

DC's comment on him not recalling a limit on them for his son just highlights why I won't be voting for him. He is so far removed from the reality of parents struggling financially with a child with special needs!

Great Stuff, Riven.

However, Axiom, to be fair to DC, my dh wouldn't know how many our dd2 gets!!!

But I do agree he will have no idea of the true cost of a disabled child to non Old Etonians.

We get more than four a day. We get pull ups and we get nappies for nightime and we get disposable bed sheets and washable ones. We were limited at one point but our paedatrician wrote a letter to the continence people and our continence nurse has been very understanding and issued as many as we need. Infact we have too many now and I am convinced they are breeding under my daughters bed.

I imagine the 4 nappy rule was brought in because people abused the sytem when there was no limit and now you do unluckily get people within these continent deaprtments who take the 4 a day rul as gospel and do not use their common sense. As I say though, if you follow the correct procedure you can get more. I do understand it should not be anotherbattle to fight though

Our school nurse never even responded to ourreferral to her, we never met her in 2.5 yers of ds3 being assessed and in her school.

HV said no referrals until 7, but I don't know about the 4 nappy rule as peolewe know who had stopped needing them but couldn't get the contionence people to cancel the order for months were passing them on to us.

One might suggest that a speedierresponse to changed needs would free upservices for the 4-7 age bracket.....

Well done Riven! (and thanks for the links) It highlights the lack of common sense and the discrimination against children (as apposed to adults) with disabilities.

AngryfromManchester it is great that the continence service is as flexible as it should be in your area - but many of us live in areas with systems that either do not work ( even after hundreds of letters and calls) or are so highly regulated they have no flexibility.

The continence service in my area hasn't been flexible at all! I have just followed their procedure for increasing my supply and got the relevant people involved in order to get it increased. Your Mp will fight it for you aswell if you need him/her to. I realise people do not have the time to fight (and yes it is another battle) but if you do have the time to look into legislation and you have a good paed and continence nurse then you will often find if you say the right things and involve the right people they will give you what you need. We did not have to do this input and output nonsense either.

We were also told we could not have pull ups and then they said actually we could have one a day. My social worker got involved and they agreed to them. I will not tell you what she said though as I am aware after the media coverage of riven that it may be quoted in the daily mail

I will not tell you what she said because it is a bit personal btw, I would if I could

AFM, what is this legislation you have had the time to look into?

I don't know my social worker did it for me and the paed but there is legislation apparently and they certainly changed their minds quick enough and I am not some wealthy woman who has access to solicitors or anything, we are quite ordinary They include alot of personal stuff stuff though that might make people feel uneasy (especially when your child has a much lower mental age iykwim)

Y'see AFM, our MP refuses to take case wotrk (our AM took on DS3's statement but ahs now left the role). We can't get aSW,and the Paed refers to SW for this and just gets letters saying they cannot take us on atm, they don't take HF ASD kids and have massive wait lists for everything else.

The nappies issue was dealt with via the HV (not SN HV, we never encountered one) and was just a standard @you can't have access until he is 7'.

Tis like everything else, highly variable.

(should point oput the DS we wanted nappies ofr wasn't the HF one, but that was the one we were assessed for first and caused us all the access issues- once you get deemedcapable by SSD you're stuffed even when you have further SN children)

Cab't you even speak to the duty social worker who would be part of the childrens disability team? I thought they had to do a home visit (by law) within 14 days? It should not make any difference whether you are capable or not, social workers are there for this reason (same with dla forms etc) it is what they get paid for. Previous children should not be taken into account either, wtf is that about?