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.

Does he know what he's letting himself in for ?

Well done Riven!

well done riven/mumsnet ,i cant get my free nappies till my ds2 is five has he has sn

pixierara It's by Pulp (Jarvis Cocker)

Well done to all, especially Riven!

Brilliant stuff :)
Well done!!

riven you are soooooo of his Christmas card list now (but Oh my, that is very, very, very funny ) You do know his PR will be reading this thread don't you???

Riven Was just wondering if you had an update on this?

Have enough people been to their PCT to remind them of the legislation and that DC is backing it?

Hello everyone - have a look at this thread for instructions on how to harrass your PCT to see what action it's taken.

Thanks Riven. Anyone else? My PCT (Surrey) says:

'Continence products are supplied based on an assessment undertaken by a clinician. Children are supplied with products based on the clinician's assessment and the number of products supplied in 24 hours varies in number.

Blanket restrictions do not apply in Surrey. The norm is four products in 24 hours but we do exceed this if a clinical need is identified.'

Would be interested to hear from any posters with relevant experience in Surrey to check out whether this is the case.

Oh dear. Well, in case you fancy pursuing the non-direct-action route, here's what our colleagues at EDCM advise for those whose PCTs aren't following best practice:

'In the first instance, I would suggest that the poster emails the PCT Chief Executive to say that she has been told that she can only have four nappies, copying in the person from the Incontinence Service who has made the decision. She might copy in EDCM and Mumsnet as well, just to show that someone is watching them!'

Put what in writing - the best practice advice?

I think you could use that information in the letter to the PCT though - say that you've been told verbally that it's the policy, but that they refuse to put it in writing. Then the Incontinence Services will be forced to confirm or deny that that's their policy - no?

I have harassed my PCT. They have responded to say that they have always allocated on an assessed needs basis (ha ha ha as if). After receiving this latter, my latest delivery of nappies came, with a letter reminding me of the arrangements by which I was allowed to ask for more - for delivery no earlier than the date by which precisely 4 nappies a day would have been used up.

Sorry to hear that, r3dh3d. If you have the energy to write again to your PCT pointing out that what they're doing isn't best practice, do please copy it to EDCM and Mumsnet.

Any more for any more? My PCT (Surrey) has told me that it doesn't operate any upper limits, but I don't have any personal experience of whether this is borne out in practice.

MNHQ x