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.
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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.