So confusing

JayWalker

Sorry to hear your news, and hope things turn out better than you expect.

You don't say where you live, but many local councils will help out with things like home adaptations, whelchairs, special toys, etc. Phone them up and ask. You'll get passed around a few departments, but it's worth persevering.

mercman1969

LA claim has been turned down

Phoned toay to lodge an appeal

It would appear that they have concentrated upon the fact that Chloe has not had another seizure since December 2007....despite the fact she is on epilim and has certainly had 3 instancs where we have been on the verge of ringing an ambulance

that apart. they do not seem to have took into account her brain stem cancer and that she is monitored 24 hrs a day

The caveat they used is that in their opinion she needs no more looking after than a normal 3 year old

i asked if they thought the fact she is monitored 24hr/day as normal for a 3 year old!

Chlo is monitored for signs of her brain stem cancer taking hold....1 such sign is involuntary choking........

I stated to them that if they do not feel we should be entitled then I would like to request a night nurse to be present in our home during sleeping hours

Chloe could then go in her own room as opposed to sleeping with mum

typical really.....we were encouraged to claim by her neuro consultant who thought she should be entiteld by vertue of her NF1 diagnosis never mind her cancer

Would have thought these people would know as they must have other paitants that are claiming it

as if we havnt got enough on our plate with a sick 3 year old...now we got to go into battle with these faceless morons

H E L P!

rogjen

So sorry to hear about your sad news, have you tried getting for your son disability living allowance also a carers allowance hope this helps

laineyc_2

Mercman, I am so sorry for what you are having to deal with. I hope your appeal is successful. It must be stressful enough for you without all this.

nanokitten

How awful mercman, I'm really sorry.
I think that it is really important if you haven't done so already to get preffessional help with your appeal as the process is complex and you will require someone with a full knowledge of benefit law to help deal with the appeal.

I have been to appeal before and I could not have got through it, let alone been successful without the help of an independant benefit advisor ( from my local careres resource centre) who knows the rules and relavent case law. I listed some places to find one in my earlier post but if you've not found someone, tell us where you live and we'll see if we can find someone.

What ever you do, dont talk to the dla on the phone but get everything put in writing and don't tell them anything else until you've seen an advisor (but make sure you are withing the 1 month time limit for making an appeal). The only thing you should do until you speak to someone is to request (in writing) a full writen explaination and a copy of everything they have relating to your claim medical reports from doctors etc. (you will need this for your appeal).

one other, slightly delicate point, I guess you did not claim under the special rules, but if the worst comes to the worst and your little one gets a terminal diagnosis you would then be able to make a fresh claim under the special rules which would then be fast tracked (in addition to the appeal for the intevening time).

mercman1969

Hi folks,

Got a letter from DWP today. they have reviewed our application and have awarded us £17.50 per week DLA

Good news I suppose. I assume this is at the lower level of DLA?

Are we entitled or should we be looking to claim for anything else

Wont try to hide that times are hard currently and every penny helps a little

Thanks all