Good news!!!Updated -New DLA claim done. Its been refused

kingfisherblue

gregbythesea wrote: »

The DWP themselves decide who to contact, not you telling them who they should do.

On a child's DLA form, I think there is a section where you can put the details of someone to contact about the child. it's several years since I had to fill out a form, though, so it may have changed.

ETA: Right, I've had a look at the form, and yes, it has changed. On page 8 of this link is a section for someone who knows the child to be filled in (optional). This can be the epilepsy nurse in the OP's case.

http://www.dwp.gov.uk/advisers/claimforms/dla1a_child.pdf

anj_S

kingfisherblue wrote: »

On a child's DLA form, I think there is a section where you can put the details of someone to contact about the child. it's several years since I had to fill out a form, though, so it may have changed.

ETA: Right, I've had a look at the form, and yes, it has changed. On page 8 of this link is a section for someone who knows the child to be filled in (optional). This can be the epilepsy nurse in the OP's case.

http://www.dwp.gov.uk/advisers/claimforms/dla1a_child.pdf

Thanks, i thought this was the best place. I may even ask her to write a letter and submit it with the application. Do you think this would be a good idea?

24skins

kingfisherblue wrote: »

On a child's DLA form, I think there is a section where you can put the details of someone to contact about the child. it's several years since I had to fill out a form, though, so it may have changed.

ETA: Right, I've had a look at the form, and yes, it has changed. On page 8 of this link is a section for someone who knows the child to be filled in (optional). This can be the epilepsy nurse in the OP's case.

http://www.dwp.gov.uk/advisers/claimforms/dla1a_child.pdf

As well as filling this you can tick a box which gives the DWP permission to contact anyone involved in the child's care, which is what I always do.

OP - I'm a little concerned by the 'unrousable' part - is this something that occurs only at night? My son has a horrid post seizure phase where he falls about, can't walk etc (great fun now that he's taller & a stone heavier than me) but he *could* be roused if needed - I can imagine your daughter being unable to move if she's seized during the night & fallen back asleep afterwards , but if it's happening at other times then 2 hours of virtual unconsciousness is something that needs to be investigated.

anj_S

24skins wrote: »

As well as filling this you can tick a box which gives the DWP permission to contact anyone involved in the child's care, which is what I always do.

OP - I'm a little concerned by the 'unrousable' part - is this something that occurs only at night? My son has a horrid post seizure phase where he falls about, can't walk etc (great fun now that he's taller & a stone heavier than me) but he *could* be roused if needed - I can imagine your daughter being unable to move if she's seized during the night & fallen back asleep afterwards , but if it's happening at other times then 2 hours of virtual unconsciousness is something that needs to be investigated.

Hi, perhaps i need to change it to virtually unrousable or very difficult to rouse. If i shake her shoulders and repeatedly say her name she will respond with a groan, or an "eegh". But thats as much as you get. Its like shes in deepest sleep ever. Then after a couple of hours she wakes up like nothing has happened, no awareness of seizure.

mazza111

gregbythesea wrote: »

Was the GP's report 'helpful' towards the claim?

I am finding out more and more that GP's are preferring to give either 'none known' or 'mildly affected'.

I only mention this as the commonly held belief that you should always tell the GP what life is like at home and ideally back it up with a written list of the difficulties and needs encountered on a daily/weekly basis.

GP's seemingly now are tending to ignore patient's if they complain about having problems indoors as well as ignoring what is printed on a statement submitted.

Or is it just that I come across some pretty awful GP's?

I have absolutely no idea. I didn't see the report, it was between GP and DWP. DLA did send a doctor out to examine my daughter. I don't know if that was because they hadn't heard from the GP as yet or if it's standard procedure. The letter did state that they used her claim form, extra information given to them (differing condition updated by telephone), Someone else named on your claim form (me), GP 11/08/2012 and the HCP on 28/07/2012. Which baffled me in all honesty as the letter was dated 9/08/2012, which means they received the GP's report 2 days after they wrote the letter :rotfl: So you can see why I have no idea what it said. I've actually just noticed that error on the letter

mazza111

Sorry, I should have made clear when I answer post #7 that my dd is an adult. I have no idea if it takes longer or less when it comes to childrens' applications. Was just hoping to give Anj S a wee bit of an idea

SuziQ

I would definitely get the letter from the epilepsy nurse and attach it if you can, as they may not contact her. She is probably much more practiced at completing such a report than any of the doctors, in my experience ( health visitor for 25 years). It may mean waiting a week or so to submit, but if your applicationiis dated then it will be backdated anyway. I got this page filled out by my son's teacher, as his behaviour at school ( autism spectrum) mirrored that at home.

I have always been fortunate to only have to wait just over 2 weeks for the original claim, and less than 2 weeks for the 2 renewals.

anj_S

Thanks suzi. Yes thats what i thought. Our specialist nurse is excellent and knows my daughters condition really well. Will ask her to help. Just feel a bit embarassed, still feels a bit like we are scrounging, guess thats because i dont consider my chid as disabled, shes just Cara, who happens to have epilepsy.

kingfisherblue

gregbythesea wrote: »

Im pleased you mentioned the word 'optional' - you don't need to fill it in.

True, you don't need to fill it in, but it is a suitable place to put a nurse specialist.

The form actually looks easier than it used to, but the next time I fill in a form for my son is likely to be a PIP form when he turns 16, as he will be classed as an adult then. He is currently on an indefinite award, and although I know he can be reassessed at any time, he is already 14, so it would make sense to reassess him when he has to reapply as an adult (or rather, when I reapply on his behalf,a s his learning disability means he cannot fill in forms himself).

24skins

anj_S wrote: »

Hi, perhaps i need to change it to virtually unrousable or very difficult to rouse. If i shake her shoulders and repeatedly say her name she will respond with a groan, or an "eegh". But thats as much as you get. Its like shes in deepest sleep ever. Then after a couple of hours she wakes up like nothing has happened, no awareness of seizure.

And is she in that state for two whole hours, during daytime? Regularly? Have you taken her up to A&E or contacted the EN while this is happening? I really think this needs to be seen by a medical professional - not trying to alarm, just as someone who has and works with children with epilepsy* I would say the length of time she's out of it is unusual; postictal phases vary wildly between children and it may well be that this is normal for your daughter, but equally it could be symptomatic of a sleep disorder or a reaction to midazolam (my son was so much worse post seizure while on mido).

*As an aside, how does she manage at school?

In terms of DLA for epilepsy a large sticking point is the fact that it is a fluctuating condition and for DLA claim to be succesful the care/mobility needs have to have existed for 3 months before and be expected to continue for six months after the claim was made.

I've read through this thread and your other & it appears she was diagnosed a few months before March '12 & then worsened very recently, this may be why she was refused (did you ask for the reason she was refused?). I think a successful claim is much more likely if your daughter's medical care team thinks that this frequency of seizures is likely to continue long term. It shouldn't matter which member of the team they get information from, it doesn't have to be lengthy, it just has to back up what you've up on the form.