Total change of heart from dla!!

[mummytopebs]

I am very confused. DD dla had been refused and we had an appeal in and it was going to tribunal. A decision maker rang me Tuesday and said she had had another letter from DD consultant and that it was going to be seen by the medical team and it might change their decision. They have now awarded high rate care!!!!!

I am pleased but do not know why she has been awarded high rate I never dreamed we would get that plus I am now concerned because of what the consultant may have sent them to make them change their mind. DD has no diagnosis yet and we are awaiting test results and am wondering if he has found something out that we dont know about. I have emailed the consultant asking about test results and got an out of office reply, his secretary has now sent an appointment out in the post for 4 weeks. I am very confused, is it normal for dla to change their minds like this?

RE dla changing their minds - yes quite normal and the experience of many posters here on this forum, so I really wouldn't read into that anything sinister. But to set your mind at rest do keep chasing the consultant re test results.

Sometimes, they can see that a child needs High Rate care, but if the actual evidence isn't there, they are powerless to award it.

So you could say 'dd is really hard work, and i have to do lots for her' and they can't award it.

But the criteria is very clear. Frequent care through the day above and beyond what is usual for a child of her age, PLUS night waking of 1 block of 20 mins or more, OR frequent night waking of shorter time periods, which requires your child to be watched over or personal care needs.

It may be that the consultant phrased his letter in a way that ticks a box.

He may have said 'GDD. requires constant supervision in the daytime, and wakes 3 times nightly with a need for attendant help'

Those two sentence would be enough to qualify for HRC.

Yes it's quite normal (and most frustrating) for the DWP to change their minds. Appeal costs them quite alot so the cons. report probably swung it past it being financially viable to go to appeal.

You could call the DWP and ask them for a copy of the consutants's report if you want to see what's in it.

we got the same, they sent DD2 paed a form to fill in, and they went from no DLA to HRC, so please dont panic. DD2 has no dx yet eithger

mummy That pretty much happened to us too. Nothing and then higher rate which I wasn't even going for.

A bit nuts, the whole system.

Thanks for that you have stopped me panicking and Lougle has just ticked a box with me as to why they have probably awarded it. I sleep with dd to keep an eye on her as the blood supply cuts off to her limbs. I sent them a picture of her arm about 4 weeks ago when the supply had cut off, luckily I had set my alarm to check her and was able to manipulate it to get the blood flow back, this episode had worried the consultant so I am wondering if he has wrote in about that.

Will the dla send me a copy of the consultants report, no questions asked? Also they have awarded it for 18 months, what happens after this? I feel guilty getting it cos dd is so happy all the time to look at her you wouldnt think there was anything the matter with her, but with her condition we dont know what is going to happen

It's a horrible feeling actually, getting HRC as a surprise. It has a reputation for being very difficult to get so getting it must mean that your child is REALLY bad right?

These things are always a double-edged sword.

Totally agree startingafresh x I think because we are just used to the blood supply thing happening you just grow acustomed to it and start to see it as normal!! But when they give hrc you start to think there is something really wrong with my baby. DD is 1 next week so at least i will be able to enjoy it with her and spoil her a bit

how are things with you? Have they heard back from germany yet? any closer to finding out whats wrong?
after 18months you will have to do it all again :(

No not heard back from Germany yet. I have emailed dd consultant a few times but keep getting out of office replies. His secretary sent me an email yesterday asking us to go to the hospital in 4 weeks so guess I will just wait till then.

DD still on her meds but still changing colour frequently and still hardly weeing. She also seems to be picking up a lot of things had croup then a chest infection, then a urine infection and now an ear infection, so consultant said he might do dome immunity tests next hospital visit. I wish it was a bit longer than 18 months as then would prob change my hours at work and drop to 1 day and 2 evening shifts, as at the minute i do 3 day shifts so dd is in nursery 3 days and is picking up illness all the time. Cant risk dropping hours though if dla gets took off us in 18 month.

I just want someone to tell me what is wrong with her then i know where we stand

I know what you mean, I really worried about giving up work, but I needed to be here for the girls.
Have you told child tax credits yet? You get an extra amount if your child gets HRC £2k a year I think. Also im not sure how many hours you work, but if you do more than 35 hours care a week and earn under £100 a week. HTH