Epilepsy, night seizures and DLA.

[Fluffy1234]

In the summer my 12 year old son was diagnosed with epilepsy. Then in the autumn I applied for DLA which was all new to me. He was awarded mrc and lrm. I have since looked into DLA a bit more and realise I didn't explain how I have to check on him a few times a night and change his bedding if he wets and stay with him after a seizure. Do you think it is worth contacting DLA and filling in new forms in the hope they see he needs help at night as well as during the day.

Hmm could be worth contacting them again. I have epilepsy and have had since childhood I have always received Mrc and lrm so seems a standard rate they give out x

Thankyou Sannaville. It's all new to me and to be honest I found the form quite baffling.

I only ever reapply every 3 years they never wrote to my doctor since I was 14 (I'm 31 now!) And they've never changed my rate so hoping nothing much will change when PIP is introduced

Yes, absolutely. Phone them, tell them you didn't put everything on the form because you misunderstood, and he needs night-time care. They'll send you another form out (joy).

From the CAF guide to DLA -

The highest rate care component is paid if your child has day-time and night-time care needs

Day-time needs means they need either:
? ?frequent? help with personal care, in connection with their bodily functions. This means several times throughout the day, or
? continual supervision throughout the day to avoid substantial danger to themselves or others. Continual supervision means frequent or regular supervision, rather than non-stop supervision.

Night-time needs means that during the night your child requires either:
? ?prolonged? help with their personal care. This means for at least 20 minutes, or
? ?repeated? help with personal care during the night. This means at least twice, or
? to avoid danger to themselves, or others, another person needs to be awake and watching over them for either a ?prolonged? period or at ?frequent intervals? (this means more than twice).

Thankyou, I'm pretty certain that's what I'm doing with my son. The specialist told me about SUDEP and to time seizures and call an ambulance if they go on longer than 5 minutes so at the moment I'm up and down all night if I hear the slightest noise coming from my sons room. It's the living in fear of what COULD happen that us hard to get across on a form.

www.dwp.gov.uk/publications/specialist-guides/medical-conditions/childrens-medical-guides/epilepsy/

This is the guide that the DLA people are working from. They'll have a standard list that says "epilepsy, age of child, = MRC & LRM" or something like that. They won't have read your form or anything! Then you write them a letter saying "please reconsider this as I believe I am entitled to xyz because of abc" they'll actually read your form and consider your case on it's own merits.

Can you get the specialist to put those instructions in writing?

I've just redone the dla form for my son, who has diabetes. As you say, its the fear of what could happen. You can't just leave them all night, they might be fine, but might very easily not be!

Yes I'm seeing her in two weeks and am going to ask.

Here is the official criteria

www.dwp.gov.uk/healthcare-professional/benefits-and-services/disability-living-allowance/