Mumsnet campaigns: special needs

 

STOP PRESS
We're delighted to announce that we've received a letter from the Prime Minister confirming that he thinks that restrictions on nappies for children with SN are 'inappropriate', and that the Chief Executive of the NHS will be issuing new advice to this effect. More soon!

The special needs topic on Mumsnet Talk has long been one of the site's most passionate and well-informed areas, where parents of and carers for children with disabilities come together to share expertise and support. Mumsnet is happy to throw its weight behind the campaigns featured here.

Nappies

Many of you will know that the needs of incontinent older children are often shamefully badly met. On Talk, stories abound of doubly incontinent children provided with just three nappies per day, meaning that their families must spend huge sums to make up the difference between what the primary care trusts provide, and what their children actually need. Other posters have pointed out that the incontinence products provided are often unsuitable and ill-fitting.

Every Disabled Child Matters logoMumsnet is joining forces with Every Disabled Child Matters to ask the new government to clarify its advice to PCTs, and to call for for trained incontinence nurses to provide proper, individual assessments of each child's needs.

We have delivered letters to prime minister David Cameron and to the secretary of state for health Andrew Lansley outlining our position (see below for the text).

Now we would like you to use this link to email David Cameron indicating your support.

Do please post on this thread to let us know of any actions you've taken. EDCM has more information about the campaign.


Dear Prime Minister,

Disabled children: action on nappy restrictions

Mumsnet members feel strongly about issues around provision and assessment for children with special needs. This strength of feeling owes much to parents of children with special needs who post regularly on the boards, and are both liked and respected for their expertise. As you will know, one of these posters, Riven Vincent, brought the issue of PCT nappy provision for incontinent older children to your attention when you did a Mumsnet webchat some months ago. You were subsequently good enough to visit her and discuss the issue at some length, and made a commitment that a Conservative government would tackle NHS limits on nappy provision.

Mumsnet is working with Every Disabled Child Matters – the campaign for rights and justice for disabled children and their families – to establish the current policy situation and recommend some next steps.

We believe that 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. Mumsnet and the Every Disabled Child Matters campaign recommend that you demonstrate have listened to parents by launching an initiative to ensure that families can use a personalised approach to accessing nappies. This initiative 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.

Yours sincerely

Mumsnet and EDCM

 

Child wearing Every Disabled Child Matters t-shirt

Every Disabled Child Matters and the Constituency Pledge campaign

In the run-up to the recent general election, Every Disabled Child Matters asked its supporters to approach parliamentary candidates and ask them to commit to support disabled children, their carers and families by signing the Constituency Pledge.

Last updated: 18-Aug-2010 at 3:43 PM