Mumsnet, special needs and nappies: your thoughts please

[rowanmumsnet]

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.

[Sidge]

Riven your DD and mine are pretty similar in that respect I think - my DD2 grew out of the Pampers size 6 because despite being within the weight limit for them they just aren't designed for 6 year olds - they were cutting her in half (and leaking).

We now have the XS pull ups which come up to her nipples and are really bulky, giving us the added problem of finding trousers to fit her as clothes for 6-7 year olds aren't designed to accommodate nappies

I just wish someone would design appropriate products that are supplied by the PCTs on an as needed basis rather than a one size fits all one product for everybody plan that they seem to have now.

[PussinJimmyChoos]

Sidge - didn't realise your DD had special needs

[PheasantPlucker]

As a mum to a lovely 9 year old dd who uses nappies (CP, hydrocephalus, epilepsy, others....) I am v grateful to MN for starting this campaign.

[icecoldcatsbum]

My support here too! Well done ladies. My ds isn't 5 till September. We have similar problems to others here though in that my ds is too thin for the pull ups which I hope will point him in the right direction for wearing pants....... [hopeful face]

[bumpybecky]

what a ridiculous situation. I fully agree with the statement but wonder if it should be for children younger than 5. From what is posted above maybe it needs to be based on size / weight as well as age

[Sidge]

Puss - yes she has a fairly rare genetic disorder called Prader-Willi Syndrome. Pictures on my profile if you want to admire my lovely girls

[PussinJimmyChoos]

Sidge - have seen your girls before (but still not your cats! lol) and they are gorgeous.

I have heard of PWS - saw a documentary about it a while ago. The parents were struggling with the appetite of their son - it was very moving

[bethylou]

Support from me too, working as an SEN advisory teacher to mainstream schools. It's a crazy situation (and our pupils can't have pull-ups either and the nappies they do get resemble binliners, not nappies!)

[Lotkinsgonecurly]

I fully support this campaign. I work with children and young adults with PLMD in a residential school. Children come from all over the England and the range of provision from each PCT / county quite astounds me. Some children / young adults only have 3 per day as they have a toilet routine, whereas in actual fact as most parents / carers will know 3 can easily be got through in a morning. Others will quite rightly so get the provision of 8 per day, there does seem to be no rhyme or reason to it. It is simply down to cost.

I continue to be amazed with the care needed to have a child with SEN, worries like this are just so not needed and quite easily avoidable.

[TotalChaos]

support from me. despite being an SN board regular, I didn't realise that the choice of nappies for children was so dire - i.e. that people like sidge's and riven's dd are being supplied with inadequate and uncomfortable products.

[kennythekangaroo]

DS (age 11, CP) is still in nappies.

We have had a wide variety over the years and the other problem I have found is the total refusal by the PCT to accept that one type on nappy does NOT suit all children and that there should be a range of styles according to need:

• pull up or do up -especially important if you are attempting toilet training.

-different absorbancies (we now have normal for daytime and super for night)
-different makes- the cheaper ones are plastic backed and sound like you are sat on a tesco bag, rustling with every movement as well as being hot and sweaty.

I agree with Sidge about the need for an older child design needed. DS was in the biggest size baby nappies until October (age 10!), because the alternative adult ones offered were so huge and leaked.

The biggest help to us was the paediatric continence advisor who new her stuff, could pull the right strings and saw the need for more nappies (DS now gets 6), but it took till he was 10 to get this sorted.

[AccidenToryOnPurpose]

Much support here. DD(6) has cp but despite dire predictions was the earliest of the three to toilet train. Purchasing pull-ups until 8 and (ongoing) 8 for the NT kids is an expense I could do without, but believe that the decision to limit (inadequate) supply to SN is right.

Have you actually got accurate stats on which PCTs impose limits? Where we have lived it's usually been 4 or 5 which is bad enough - 3 is unbelievable. Have you got some gucci quotes from PCT pamphlets/ policy which 'explains' this nonsense?

[EccentricaGallumbits]

Bravo MN!

Bloody ridiculous expecting people to only need the the bathroom 3 or 4 times a day - the alternative being you sit in it

[aSilverLining]

This campaign has my full support, DS has prescription pull ups and we have so far never ran out of our supply thankfully but I do often worry we will and how I would afford them if I did run out.

I too need to change DS's size up as his size 6 pull ups are leaving red marks. I too also have great trouble finding trousers, especially school ones, that have enough room to accomadate tall and broad 5 yr old, his swollen runded tummy and his pull ups.

I am pleased we get pull ups for him but do agree the system needs reviewing and a more tailored to each child approach needs to be introduced.

[twoisplenty]

Another one in support here! My ds is 11yo and wears a nappy at night. But the PCT will change his order every 6 months or so to cheaper and cheaper brands, and now they won't supply pull ups (it was a battle to get pull ups for him anyway, when he used them day and night).

Sick of the whole thing, I have to buy pull ups now.

I did complain to the PCT, but only had a letter to say they would look into it, and no more yet.

[Donki]

Ok, something I can do, I will write to my new MP.

[TheStraitsofWTF]

Adding my support for this - let us know what we can do, as non-service-users.

[bigcar]

Another supporter here. Dd3 benefits from free nappies, has done since she turned 4 a few months back. There is no choice of brand so the brand we get cuts into her leg slightly, tesco ones fit her fine but we can't get those. She's no where near toilet training yet but pull ups won't be an option when she is. There is no flexibility at all in my area, it's not just about the number of nappies you get.

[RowanMumsnet]

Thanks all. Anecdotal evidence is very useful and could be used to back up the case, so please share experiences where you feel happy to do so.

donki and others who are champing at the bit -please don't write to MP yet (at least not using the specific wording below), as we haven't sent anything to the PM yet - your letter might have more impact once Cameron has received the submission from MNHQ and EDCM. (Of course if you want to raise the matter in your own words, feel free!)

In the meantime, if you want to harrass your new MP about SN matters in general, you can always ask them to sign up to the Constituency Pledge on SN provision (still running and welcoming new recruits).

[PheasantPlucker]

Deliveries themselves can be problematic too. Dd's was due last week. On Monday I called them to ask where it was. Was told that they had run out. And the lady on the phone could not confirm when we would receive them.

Now the problem here was that my dd was off school with a really nasty stomach bug, I was changing nappies every 30 miutes, and looked as if I would run out. She is a small 9 year old, but does not fit in standard nappies on sale in Tesco.

I explained to the lady the current situation. DD had also surgery on her legs last week, I was knackered, and this was the final straw. And, to my shame, I started to cry on the phone. And also mentioned that people would be less blase if it was the epilepsy medicine my dd takes that was not being supplied.

To be fair, the lady then apologised profusely, and organised a supply of alternative nappies, which arrived today.

But I suspect this would not have happened had I not clearly been 'a woman in tears and on the edge' Parents of children with SN do have quite a lot on our plates without the added stress of nappy issues!

[MannyMoeAndJack]

This sounds good.

My ds was offered a maximum of four nappies ('products' actually!) per 24hr period from when he turned 4yo. I explained to the continence nurse who measured him up that four per day would not be sufficient, that he had bowel movements three times per day, etc. Made no difference because four per day was the rule. I wrote to my ds's paed. but nothing changed. I had to supplement his allocation with nappies that I bought myself.

We are now allocated five nappies per 24hr period (long story but it is due to an inadvertent clerical error on the part of the continence department). Needless to say, I am delighted about this error but I know from reading on MN that some areas are only allocated three nappies per 24hr period, which is totally shocking.

Allocation of nappies really should be done on a case-by-case basis. A friend had to write and complain about her four per 24hr period allocation because her ds has severe problems with his bowels and bladder. In her case, she was successful in securing six nappies per 24hr period.

Lack of communication about products is another problem. The same friend would often complain about her ds's nappies leaking during the night. Turns out she had only been informed about and allocated the super absorbency. It was only when I mentioned to her that we get the extra absorbency nappies for night-time that she found out about them at all! She had been forced to use two nappies at night, one on top of the other, in order to prevent leaks but had thus been using up two of her valuable six nappies at once.

Another issue for some families is with obtaining pull-ups (once size 6 becomes too small). Pull-ups are ideal for toilet training but they are almost impossible to get hold of (too expensive I believe). This should change because some SN kids are able to toilet train and it is much less wasteful using pull-ups (not to mention more practical) because they can be worn between toilet visits, unlike regular nappies.

If I think of anything else, I'll post again.

[nappyaddict]

5inthebed Did size 6 nappies not fit him? I think we worked out on one of the pushchair threads our DS' are a similar size?