DLA for babies with bleeding disorders?

[haemomum]

Hi everyone,
I'm waiting for an appeal date for DLA for DS(12m), just wondering if anyone knows the success rate for DLA claims for bleeding disorders? Has anyone been awarded DLA for a child with severe haemophilia A, or any other bleeding disorder? I know of a few but i'm thinking if I can go to the appeal and say I know of X amount of people getting DLA, they're less able to refuse it to DS. (Don't worry, I don't want names or anything!)
Any help would be greatly appreciated!

Hi my DD hasn't got a bleeding disorder but has a genetic condition that affects her health, I get high rate DLA for her but others in our support group have had to appeal. What has helped them is taking information from the consultant about the extra care the child needs and outlining that the child would not be able to do without it.

Also if there is a support group sometimes they will help and write a letter with similar. Sorry you have probably thought of all that, hope you get what you need.

Thanks used2bthin, I have managed to get a letter from ds's consultant, took a while but I managed it. The worst thing was the social worker at the hospital rang me and said she desn't normally advise people to claim for the first year or two, because it's so difficult to get for a baby what kind of attitude is that for a social worker who's there to support parents of disabled children??
"should" is the operative word there Fio, it's a shame DLA can't think like that. There is actually a section on bleeding disorders in the DLA handbook, which states that people who suffer from the severe forms need a lot more supervision, whereas they told me that ds doesn't need any more supervision than a normal (their word, not mine) child of his age. Does anyone else sometimes feel like inviting them to observe what we do for our kids all day?? sorry for the vent got a bit carried away!

my dd dont have a bleeding disorder but as other problems she gets DLA at top since 7 months

Oh it is so frustrating isnt it? I was told similar when I spoke to my HV and if it hadn't been for the fact that the consultant had already said we should be able to get it I may have listened. I would be amazed if all babies needed the amount of care my DD was needing at that age! The people I know who were turned down seemed to have put almost the same as me, it seemed so random. They got it in the end with the letters so hopefully that should help. Have you heard of contact a family? A support worker from them came and did my DD's forms with me both times.