DLA for incontinence (secondary to Spina Bifida

[EmilieRushmere91]

I just wanted to make a quick thread that might be helpful to any parents who have a child with incontinence secondary to Spina Bifida or any other spinal problems and are looking to apply for DLA. We applied and were rejected 4 times before we were awarded it this year, and I found very little/no help online from anybody who was in the same boat as us so I figured this might help someone. Even if it is 1 person!
My daughter is 5 and was born with Spina Bifida. As a result, she is completely incontinent of urine (wears nappy 24/7 including at school and I catheterise her 3x per day) and has lose anal muscles (although she manages to stay mostly continent this end) BUT can walk/run as normal, which is why it has been so difficult to get DLA. A nurse at our hospital suggested the DLA to us, mainly to cover the cost of electricity and water used from having the washing machine and tumble drier on 24/7 (her clothes get very smelly from wearing nappies and she can get through 3 pairs of trouser some days if she leaks).
Is anbody stuggling with a situation similar to this? Because now we have been awarded, I would love to help anybody else who is struggling! Especially as I have NEVER found another parent whose child has Spina Bifida and is purely affected by incontinence, not mobility.

[blaeberry]

No relevant experience but just wondering; could the reason you were turned down for DLA be due to age? Could it be that you don't get DLA due to incontinence until you are passed the age where most children have gained continence?

[EmilieRushmere91]

Yes, you're completely right. I know that before she was 5 one of the reasons was her age. They deemed it acceptable for a 3/4 year old to still wear a nappy at that age. Now she is 5 she is past the age where they should have gained continence so that is another factor to bare in mind for anyone who has been repeatedly turned down.