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.

[ginnybag]

You have my absolute support for this. My cousin was severely autistic and never toilet trained. It was constant battle for my Aunt to keep him clean and dry and a major drain on her family's budget.

If they want to look at cost cutting measures in the NHS, this isn't one of them!

Travel vacs - now there's something that could be charged for. No-one needs to go on foreign holidays.

At absolute worst, this should be a prescription item, and charged as such.

[45nanny]

well done to you ladies for this campaign.
My son is now 15 and is still in nappies at night. we have been cut from two a night to just one , which is never enough.
He has many nights where he soaks through by midnight and some nights he will remove a nappy at leats three times in one night and has had many upset tummys , so we frequently run out . I am always having to buy my own , at £30 for 28 .
I get mine from ATTENDS , which come in many different sizes and they do delivery promptly(at a cost).

[magso]

I also think learning disabled children with regular or primary nocternal eneuresis ( night time wetting)should get protective products in the same way as adults. My son is nearly 11 and although he is in pants by day has no overnight control (dare I say yet). Children who need pads/nappies/bed [rotection at night but are almost dry by day are not allowed pads/nappies for some obscure reason (adults are). The argument is that parents train their children latter so it is parental choice. Well it may be in 3 year olds but by 10 with a disabled child who desperatly wants to be dry - it is not!! Products available from the supermarket are either too small or not suitable for full scale incontinance so we have to order costly products via the internet.
Whilst we are on the subject - pull up styles should be available for those children for whom they are suitable - ie those gaining independance.

[YouKnowNothingoftheCrunch]

This is the most ridiculous battle for the simple reason that obviously nappies should be supplied to meet demand.

It makes me angry to think that with all the other things families with disabled children have to fight for, this should even feature!

I offer my full support to the cause.

[PheasantPlucker]

Really? They do, it's on dd's IEP. Ooh, that's interesting FioFio, thanks.

[VengefulKitty]

I don't usually back campaigns but I am fully behind this one.

I used to be a hospital and home carer, for adults not children, but I understand the need for dignity, health and hygiene. To be limited to 3/4 nappies per day is utterly disgraceful and makes me MAD!

As someone else said already, it is akin to telling one of us we can only go to the toilet 3/4 times a day. Could we really do that? Not a chance in hell. And in the same way, no one can expect a person, to have to sit in their own bodily fluids that rip the skin to shreds.

Utterly disgraceful.

Well done MN for picking up on this campaign.

[TopsyKretts]

I agree that provision should be based on need: my autistic relative has continence issues connected to bowel problems linked to her condition. The idea that a child can't have a fresh nappy after a soiling incident (and there can be several a day) is ridiculous, and directly contributes to painful soreness, which in turn can affect behaviour in the children. All this makes these children's lives and their parents' avoidably more difficult.

[Poohbah]

Not just children either, I work with severely disabled adults with continence problems and they experience the same problems. Why not have online ordering for these products as well??

[meltedmarsbars]

Another one with a dd2 in nappies (aged 7) with no end in sight.

I changed my daughter 5 times in one hour last night. I have a few basic pointers:

The number, type and absorbency level should be an agreement between carer and Inco Service according to need not cost.

They should be delivered (not all areas have delivery), with flexibility to deliver to an alternative address.

Any delivery problems should be treated as priority

There should be the flexibility to adjust numbers according to sudden needs (eg D&V illness)

There should be the facility to ask for a re-referral to the inco service to adjust type/size when needed.

Inco treatment should be a basic human right. At the moment it is treated as a luxury. Count me in for any petition.

[morningpaper]

If there are any MNers in the Somerset area that wish to take this up with the PCT, please email [email protected] and I'd be very happy to help.

If any of you would like to pursue this, I'd recommend contacting your Local Involvement Network - these are run by every local council and act as a formal voice for users of health or social care services. Contacting your LINk will give you direct access to commissioners of services such as PCTs who have a legal obligation to respond to requests made within 21 days.

[DizziesMum]

Another way to lobby the PCTs is to contact the Health Scrutiny Committees at local authorities. The role of these committees is to hold the local health trusts to account and raise issues which matter to the local community (either small groups of people or the population as a whole).

[ChocolatePants]

Adding support- I work with children with disabilities, I speak to their parents- it is awful.

[MABS]

don't start me on this, ds is 9 and is incontinent, has CP and has to self catheterise 5 times per day. took me 2 yrs to be allowed any products,the ones they gave are crap, and yes we have to collect them too. Went to panel to get others, had em 4 weeks, they are worse.!!

[Milliways]

This is great.

I had absolutely no idea that parents coping with SN kids had this sort of ridiculous constraint places upon them!

I work within the NHS, and am well aware of PCT budgets, but surely this would get general public support as well, as there must be millions like me who have heard of other NHS battles (Cancer drugs etc) but never this.

Well done MN

[roundthebend4]

Im in and could it be if you been assesed as need for dc in one area moving somehow does not mean magic and that dc are dry and no longer need nappies .Instead of having to go through it all again ,
We not had nappies since March as we have to wait to see community paed next month

[MummyElk]

also marking my place and think it's completely awful that we need a campaign for this in the first place...
but massive banner waving for the campaign - and for Riven for starting the ball rolling in the first place
years ago i worked as a care assistant and worked with some amazing kids with SN, if i'd even known their nappies were rationed i'd have been completely , you can't ration weeing!!

[Nymphadora]

Marking my place.

Is it worth sending info to local SN places? If mn could have leaflets/ posters put out there to get others to join?

[ilovesprouts]

my ds2 is not old enough for them yet ,but 4 per day ?

[MannyMoeAndJack]

Ref: deliveries

I live in dread of anything interrupting the delivery schedule. Things like snow, manufacturing problems, etc. I daren't even think about what it would be like to go a single day without nappies.

PheasantPlucker - so sad about your dd. Did they expain why they have a 1yr rule or whether you could have your dd reassessed?