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Mumsnet, special needs and nappies: your thoughts please

(80 Posts)
rowanmumsnet (MNHQ) Tue 18-May-10 16:50:16

As some of you will know, following Riven's sterling work with David Cameron, KateMumsnet and I have been following up on the four-a-day nappy 'rule' issue with the help of Every Disabled Child Matters.

EDCM have looked in to the issue and come up with the following policy statement. If it's something that draws broad support, we will band together with EDCM to put pressure on the new government to pass this advice on to primary care trusts. We'd be very interested to hear your views, so do please post 'em here.

Cheers

Mumsnet Campaigns

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Every disabled child should be able to lead a full and happy childhood, and families with disabled children should be able to access support to ensure that they can lead ordinary lives. Often, this just means getting the basics right. Some disabled children, as a result of their impairments, need to continue to use nappies throughout their childhood.

There is no dispute that nappies should be provided to children aged five years and older with impairments that mean that they have intractable bladder/bowel problems/inability to be toilet trained. However, the current system is not set up to deliver a personalised approach, in which families have a choice in the way that nappies are supplied to them.

Although nappies should be supplied to meet individual children's needs, in reality PCTs in some areas respond to funding challenges by placing blanket restrictions on the supply of nappies to families. This is often due to a lack of specialist paediatric continence nurses who are able to carry out appropriate assessment that identifies the actual level of requirement for each family. As a result, there is a blanket provision to 'all' disabled children which is not based on accurate needs assessment for the area. This means that families are supplied with a set number of nappies - frequently just four per day. This set number is often not sufficient to meet their child's needs.

The new Government should act to tackle this straight away. We recommend that they demonstrate that they have listened to parents by launching an initiative to ensure that families can use a personalised approach to accessing nappies. This initative should make sure that every PCT carries out a needs analysis to establish the level of local need for nappies, and then plans supply based on this knowledge. In addition to this, they should ensure that professionals who assess families' needs are trained in appropriately identifying a child's continence need. By adopting this approach, PCTs are likely to take a more cost effective approach and significantly reduce the stress that parents experience.

FabIsGoingToGetFit Tue 18-May-10 17:02:43

<peers>

Rowan and Kate - new people???

rowanmumsnet (MNHQ) Tue 18-May-10 17:05:42

Well, not-quite-new people to whom Justine has recently given proper log-ins <drunk with power>

StewieGriffinsMom Tue 18-May-10 17:06:26

Well, I like it but when did we get new people?

rowanmumsnet (MNHQ) Tue 18-May-10 17:09:29

Me = policywonk; Kate - OneBatMother. We've been doing the campaigns gig for about six months but have only just got the log-ins.

Sterling work ladies!

I've no experience or anything to offer in the way of opinion, other than to say I have followed this from the beginning and you have my wholehearted support.

Do I have to sign a petition or summat?

<not sure whether to wave a flag or cheer or what really but am definately on board>

StewieGriffinsMom Tue 18-May-10 17:16:18

Ohhhh - does this mean you have the power to [whispers] delete?

Sidge Tue 18-May-10 17:16:18

4 a day?

I wish - we get 3. Often we've gone through those by lunchtime.

I fully support a campaign that pushes PCTs to provide continence products that are needed, not a token gesture of supply. In our PCT we can't even get pull-ups which IMO would potentially help my DD in toilet training.

The whole system needs review.

policywonk Tue 18-May-10 17:21:10

Thanks sidge and notwaving. If we go ahead we'll try to think of a way for individual MNers to show support.

SGM - no! We can start threads and fiddle with the campaigns web pages. Nothing else - no deletions, can't see people's name-changes, don't see emails that get sent to MNHQ unless they are specifically forwarded to us because they're relevant to campaigns.

policywonk Tue 18-May-10 17:21:40

Gah, wrong log-in...

Jux Tue 18-May-10 17:25:47

I followed Riven's threads about this. I am fully in support of this. It is disgraceful that families like Riven's and Sidge's have to try to manage on such a sparse supply - and nappies are expensive even for tiny babies, but for larger sizes (if you can even get them) the cost is prohibitive.

HelenMumsnet (MNHQ) Tue 18-May-10 17:29:08

Hello. Yes, seeing as Kate (onebatmother) and Rowan (policywonk) have been doing such sterling work on our Campaigns stuff, we've given them proper Mumsnet HQ names.

It also means they can post as onebat and policywonk when they want to be rude about us talk about non-Campaigny things.

And no, they don't get to delete: you have to know the special coded password and have the key to the lead-lined chamber in the Shed for that. Not sure they're quite ready for the excitement...

StewieGriffinsMom Tue 18-May-10 17:39:31

grin

Seriously, though, I think its a great idea and I do think a petition would be helpful or one of those master emails to send to your new MP.

Sidge Tue 18-May-10 17:41:47

Jux they are really expensive. 44 pull ups for 34 pounds or 84 nappies for 36 pounds.

44 pull ups will last us about 8-10 days. It's a dear do but apparently that's what our DLA is for... hmm

Jux Tue 18-May-10 17:54:49

Of course it is, because there's absolutely nothing else you need it for, is there. Bloody ridiculous.

DidYouDoThisOnMyHead Tue 18-May-10 18:00:52

The mind boggles that a campaign like this is needed. Of course parents of disabled children should be able to have as many nappies as their children need.

Katemumsnet (MNHQ) Tue 18-May-10 18:09:25

<nicks post-its from the stationery cupboard>

The mind does indeed boggle DYDTOMH. Sidge, we (or at least I) hadn't realized quite how expensive they are - that really is shocking.

Tee2072 Tue 18-May-10 18:09:38

Whatever needs to be done, I'm in. My son is 11 months and I cannot imagine the stress of having him in nappies any longer than necessary. Never mind for, perhaps, his whole life and not be able to afford them or get them at all. Just ridiculous.

::marches carrying a sign:: Nappies For All!

ohmeohmy Tue 18-May-10 18:13:53

Got my support. Think statement is good. Hope Dave keeps to his word.

I have been following Rivens threads and I have already written to my MP about this so you have my support.

tibni Tue 18-May-10 18:37:05

You have my support too. I was fortunate that my ds (severe ASD, Learning difficulties) toilet trained only slightly late; although we were told he might not train at all. There was no advice at all available regarding how to toilet train a non verbal child with limited understanding which I would have valued so much at the time.

5inthebed Tue 18-May-10 19:31:19

You have my support as had problems getting any for DS2! Every time he reached the age for nappies here, it was increased [anry]. Thankfully he is no longer in them, he was out of nappies the month before his 4th birthdy.

I do think that the age 5 years + should be looked at though, and that it should go off size of the child as well. I had major problems finding nappies for DS2 when he was three because they just didn't make any that fitted him proplerly. He was too thin for pullups and too wide for normal nappies. We weren't entitled to free nappies that would have fitted him by his weight and you can't buy them over the counter either.

sarah293 Tue 18-May-10 19:38:17

whooooooooooooooooooooooooooooooooooooooo

Now dd is in adult sized (and no, there are no sizes between Pa,pers size 6 and adult XS and they come up to her armpits) they have to be bought from Hartmans and are extremely expensive.
She gets through maybe 6 or 7 a day because she is doubly incontinent.
Arrnage a meet with Dave you mumsnet people and give him what for. He promised to write to the PCT's about this.

coppertop Tue 18-May-10 19:52:39

You have my support too. I was lucky that my two with ASD were out of daytime nappies before they were 5. There's no way three or four nappies a day would have been enough.

Could you imagine telling an adult, or even a child with no SN, that they were limited to 3 or 4 toilet trips in each 24hr period? And yet this is what incontinent children are effectively expected to do.

sarah293 Tue 18-May-10 19:53:43

and periods. When dd reaches that stage things get more messy.

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