Special needs and nappies: campaign WIN!

[RowanMumsnet]

We're delighted to announce that we have received a letter from David Cameron in which he agrees with us (and our partnering organisation Every Disabled Child Matters) that the rationing of nappies for children with special needs is 'inappropriate'. He says:

'I know, from my own experience, how important such supplies are, and how difficult it can be to rectify the situation if parents are not getting what they need. I also remember how strongly many parents feel about this issue following my earlier online chat...

The best practice guidance... states: 'Pads should be provided in quantities appropriate to the individual's continence needs. Arbitrary ceilings are inappropriate.' Riven, and a number of your members, have helped to highlight the fact that arbitrary ceilings are nonetheless being used in some areas. That is why the Secretary of State has asked the Chief Executive of the NHS to remind PCTs' Chief Executives of the content of the 2000 guidance.

I hope the action that we have taken will make a difference.'

You can read more about this on EDCM's website here. Please keep us posted on this; we will be seeking to ensure that the PCTs follow through on this advice, but we'll need you to help us do that.

Oooh Riv, I'd love to be a fly on the wall of the local PCT when you drop that in

Blardy marvellous news!

Brilliant brilliant brilliant :o

I will be on the blower to our PCT's Incontinence Service tomorrow.

Fantastic news!

oh that's great
i do hope it makes a difference, sometimes it's like a brick wall isn't it

Belle, EDCM has issued a press release - we're waiting to see if anything comes of it. Carrie and Justine are primed and ready to talk to the press if anybody takes the bait.

As far as we know, the advice to the PCTs has not actually been issued yet - so by all means go and hassle your local PCT tomorrow, but they might not know what you're talking about. Tell them to expect something in the post from the Chief Executive of the NHS reiterating the 2000 best practice guidelines! We'll let you know as soon as we know that the actual advice has been issued.

Not to rain on anyone's parade - but if all he's doing is reminding them of existing guidance I can't see that making mucc difference. The answer from CEs is likely to be that it's only GUIDANCE and in the face of budget cuts they have to make decisions based locally.

But the best practice guidance also says, as quoted above, that supplies should be 'provided in quantities appropriate to the individual's continence needs'. So if PCTs are being told more strongly to follow this line, that should give parents/carers more to argue for if their child's individual needs are not met by the PCT's provision.

Agreed eightieschick - but the guidance has been in place for 10 years - so it was always available for parents to use?

Congratulations Mumsnet, and well done Riven Hope it works out better now.

Great.

However, like someone else pointed out; no money is being thrown at this 'solution'.

I do rather feel that this was an easy way to curry favour with DC actually doing very little. He only wrote an advisory letter.

Lot of drama, tiny action. DC gets big round of applause...for what?

What cut will PCTs make to balance this demand?

I don't think this is the victory we would like to believe but good on mumsnet, riven and everyone for persevering with this.

Well done everyone from a mum who has an incontinent son who needs supplies like this! Well Done!!

so you can have the number of nappies as you need, but what about the quality of the nappies?

if they can't/won't change their suppliers' contracts, then you're still left with nappies that leak everywhere, so you're effectively in the same situation. :(

This is very encouraging news and well done to Riven and MN.

I realise that the outcome of this campaign is still new and that the information has yet to be formally disseminated to the PCTs but I would be very interested to know whether any changes will actually take place as a result of D.C.'s intervention.

I hope lal123's concerns will prove to be unfounded.

Well done riven & mumsnet

well done MN and of course Riven...You do realise that you and Dave are going to become good friends now don't you.....first housey visits, and now listening to your campaigns. Very well done

Fantastic news!!
Riven - you have raised the profile on this issue so well with the help of MN. I don't really mean to sound gushing but you are inspirational and it just shows how important it is to speak out about injustices!

DC - (if you're reading!) Thank you and well done on taking this seriously!

Riven - maybe his next campaign song could be "I wanna live like common people, I wanna do what common people do" can't remember who by and I am sure you are NOT common!!!!!!

So delighted to hear about this! It even brought a little tear to my eye [soppy]