The Mumsnet/EDCM nappies campaign: how's your primary care trust doing?

[RowanMumsnet]

As you might recall from this thread, back in August pressure from MNers and EDCM supporters resulted in David Cameron instructing the NHS Chief Executive to re-issue advice to primary care trusts, explaining that the provision of nappies for children with SN is supposed to be based on individual needs rather than arbitrary ceilings.

Now that a few months have gone by, we need your help to find out whether this advice has had any effect. Click here to send an email to your local PCT asking what action they have taken to put the guidelines into effect. Of course, you don't have to be the parent or carer of a child with SN to do this.

Please post here to let us know what you've done, and of course if you get any responses.

fantastic result from mn and edcm

I rang to get the size changed of dd3s nappies a couple of weeks ago and have been told I can have as many nappies as we need [yay] But I have also been told that I HAVE to start toilet training her NOW [sigh] [scream]

I wrote to my PCT last week to ask them about their policy and whether it will be changing in the light of the campaign. They will apparently respond in 28 days...

Still 4 a day here too. Crap. Raised it with paediatrician - he is writing to local PCT head on our behalf.

Still 4 a day for DS2 (when they actually arrive) here and we have to buy our own pull ups for DS1 because they "can't" provide anything suitable for him.

Done it - 31 now. I will post to Facebook and a couple of other places.

I've emailed.

Done, due a delivery today so will see how many we get.

done & reposted on fb

Have emailed. Thanks for highlighting this.

Hi- have just read this thread and emailed- I must admit the continence service has been good with us-I think we're on 4 pull ups plus a night time nappy-but when we ran out during a difficult time,they arranged for more-also the ones they were providing at first were rubbish(pull ups) don't know who they were supposed to fit,but certainly not my ds,so now they give us 'drynites'(for daytime)which work- I know several people though who have not shared my experience.

I have emailed and shared the link on FB. This is so important. I am a HV so I will know if my PCT lie to me as I have a ready supply of people to ask. The four a day rule is ridiculous and always has been - it should always have been based upon need.

Oh yes I must chase. Mine were still refusing to up the limits, so I sent them the link and they were getting back to me.

The last I heard (on 16th Sept) was this:

Many thanks for sending me the article re nappies fro disabled children,
we had not hear about this. I have forwarded it on to my Chief Officer,
Commissioners, Director and Finance Director for their comments,

Right- will chase again.

well mine did not arrive today.

Have now had this reply:

"Have sent your previous emails to our Chief Officer, Director of
Services and the Paediatric Continence Specialist nurses but as yet no
further information on this matter,"

So now what? They've had since Sept.

Another reply - a meeting now arranged.

Hoorah. Movement.

ok, done it and linked it on my facebook page. hope it works i know so many parents/dcs this affects

am going to be chasing mine as we gone backwards and school now want him in pull ups in day to many accidents .Did not get night time nappies and since he 5.5 hopefully we will get this time

Riven Have you written to the head of your local PCT?

I got a response from the CE of the PCT today! Nothing interesting to report but have forwarded to edcm.

We are not too bad, we get 5 a day and school are toilet-trsining him so we have enough to last us for 10 of the 12 weeks a delivery is supposed to last. They are good in sending deliveries out a week early but we still could do with more.
I have asked before if we can buy the extra we need but that is against rules.
Will email them about the new changes and see what they say

I got this reply today...

"I am writing in response to your email addressed to Jan Stubbings, Chief Executive of NHS Gloucestershire, regarding concerns about whether there are ?blanket? restrictions on limiting the supplies of continence products to disabled children in Gloucestershire. NHS Gloucestershire does not impose such restrictions and instead the following process is applied.

NHS Gloucestershire commissions a continence service from Gloucestershire Hospitals NHS Foundation Trust. As the service receives requests for continence products for children and young people from professionals all over the county, the service on a routine basis provides a maximum allowance of 4 products a day per child. This usually meets the needs of most children.

If a carer or assessor feels the child or young person requires more than 4 products a day to meet their clinical need, then a more formal assessment from a Specialist Paediatric Continence Nurse is arranged in order to ensure the provision of the most appropriate amount and type of products."

ive just got my nappies through 3 per day and have to try him to get on the loo easy said than done