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MNHQ

Special needs and nappies: campaign WIN!

8 replies

RowanMumsnet · 18/08/2010 15:57

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.

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MNHQ

RowanMumsnet · 18/08/2010 16:52

Riven, if you email me your address ([email protected]) I'll print you one off!

MNHQ

RowanMumsnet · 18/08/2010 20:42

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.

MNHQ

RowanMumsnet · 16/11/2010 11:16

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

MNHQ

RowanMumsnet · 17/01/2011 16:27

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.

MNHQ

RowanMumsnet · 17/01/2011 17:03

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!'

MNHQ

RowanMumsnet · 17/01/2011 17:18

Put what in writing - the best practice advice?

MNHQ

RowanMumsnet · 18/01/2011 10:33

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?

MNHQ

RowanMumsnet · 14/02/2011 10:34

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

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