Honest answers please...what are DLA appeals really like??

[Heartmum2Jamie]

I sent my ds's dla claim off on August 24th and had a letter arrive while we were on holiday (dated 12th Sept) to say they were going to get some info off our gp. The GP was away last week, so the first chance I got to see him was yesterday. I went in armed with a copy of the claim form and explained what our days were like as I know he has no idea. Then today, a letter arrived saying tha ds is not entitled to dla as the gp's report said his care needs ar not more than the average 2 year olds and he certainly did not bother to mention to me yesterday that he had already done his report

We are going to appeal and get lots of supporting evidence. Ds2 has congenital heart defects, eczema, multiple food allergies (dairy, eggs, nuts, wheat and intolerant to soya) and has narrow airways (not sure what the proper medical term is) that causes noisy, raspy breathing, gagging easily (cardiac gags) and sleep apnea. He take 3 medications 3 times a day, gets bathed twice a day, creamed 3 times a day (bloody gp put he has mild eczema......it's only mild because I look after him so well....bloody muppet!) and needs to be continually supervised because of his allergies and heart condition.

I was wondering what an appeal is REALLY like? Does anyone have any good advice or any tips, I need all the help I can get. In all honesty, I am scared but will do what it takes to get what I think my son deserves.

Anyone???

never had to appeal tbh
but will keep this bumped for you
as loads of info will come for you off posters who have been through the same
good luck
xxx

Sorry to hear this.

My ds got turned down when he was 3 yrs old, the DLA asked for info from his gp who at the time had had no involvement with ds, so how she managed to write a letter describing the extra care he needed, I'll never know. Inevitably he got turned down so I had to ask the DLA to reconsider, this time making sure they recieved a letter from his paed who knew him well, and I backed it up with a very long letter giving more than enough information, this time being succesful. I didn't actually have to face a panel, just a letter was needed. Could you ask for a reconsideration, or is it going straight to appeal? I'm not sure how the process works though but I'd imagine asking for a reconsideration is a lot less stressful than having to face a panel of know-it-alls.

BTW, I suffered from narrow airways as a child which was surgically corrected, it was called 'tracheal hypoplasia', I don't know if this is what you ds suffers from?

Try Cerebra for advice.

www.cerebra.org.uk
freephone helpline 0800 32 81 159

They produce a useful guide for claiming DLA which has info on appeals etc but will also make suggestions too. Don't be put off by its title or feel the organisation doesn't cover your son's needs, they have sound advice.

Why oh why do DLA insist on writing to the GPs? Do you have Paediatric/Consultant input? Is your Health Visitor aware of your problems? If so I'd contact them for a report and advice.

So sorry to hear this - just so unfair.

I was adviced by a lady who works for the children's heart federation to go straight for an appeal as they will do a reconsideration anyway. I am sooooo cross with my GP, partly for what he wrote when in all honesty, he hardly ever sees us apart from when we go in for prescriptions, but also for the fact he didn't bother to tell me he had already wrote to them. I plan on going back to see him, although maybe next week when I have calmed down enough to hold a civil conversation with him.

Our paed is wonderful and I have already been in touch with his secretary. She told me to write a letter outlining the points I would like him to make and do the same for his immunologist, who is also a paed consultant at the same hospital. She will make sure that they both get thye info and send thier letters onto me to look at.

My HV is very supportive too, so am trying to get in touch with her.

I will have a look at the Cerebra website and will probably go to the CAB for help.

Macwoozy, I am really not sure what ds has with regards to his airways. It was explained to us that the back of his throat was narrow (just behind his tonsils/adenoids) and that his tongue is slightly large for his mouth. The consultant figured he would grow out of it because ds was small for his age, although admitted that his tonsil/adenoids may cause problems as they grow faster than the rest of his body. He rasps on the in breath, no noticable pulling in of ribs when he breaths, gags easily (although may be realted to his heart), snores terrible if not laying completely flat and will have apneas, tend to sleep with neck hyper-extended.

Ah well, these things are sent to try us./ Felling a little calmer this morning. Still scared of the prospect of having to defend my son in front of a panel, but will do what I have to. It just sounds very draining.

Do NOT lose sleep over the thought of the panel, Heartmum. It may never get to that stage if you are able to submit new evidence. Also I've read on here that there are people/organisations who will support you if you get to the panel stage.

Perhaps someone will come along on here later who can advise you more. Anyone?

Go for an oral appeal where you have to face them. It's not half as bad as you would think and you find out straight away. There will be three panel members and they will ask you questions about your child - so it's a good idea to make and take notes. If you do an oral appeal they get a real feel for your problems and so far parents I have supported going to oral appeal have all won their case. Get as much supportive evidence as you can and send it in advance but take copies on the day.

I've recently been through this. In Brighton there's a charity called AMAZE that help you through the whole process of claiming DLA - I don't know how I would have coped without them, it's so horrible and demoralising! My original claim for DS was agreed at the lower rate for care, but the lady from AMAZE was convinced he should get the middle rate so I wrote to them and asked them to look at the evidence again. They didn't ever actually write to my GP or anyone I listed because DS has autism, not a "medical" condition, so I asked his paediatrician to write a report backing up my claim and sent it off with my letter. This failed to convince them to change their minds, so I appealed this. The lady from AMAZE told me that my evidence (original claim form, all the reports I'd sent) were good enough that she thought a well-argued letter should convince them to change their minds without going to appeal and she was right - we got a lot of backpay last month! I think the whole process is designed to demoralise you, but persistence can pay off!