To be twitching whilst doing ds's DLA form

[ledkr]

wtf? I had heard it was hard but bloody hell,how do I remember all the dates of tests etc and how many times do I have to tell them the same piece of information. I have given up being creative and am just writing the same statement over and over again. Do they not realise that when you are ill that each day is different,you can be ok one day and half dead the next grrrrr.

Just needed a green tea and a quick rant before I get back to it.

Yep. I second putting the worst case down. Get advice/ help from anyone who has filled them in before.

If the judgement doesn't go your way, appeal. If you appeal you will find out why you were turned down which makes it easier to argue with IYSWIM.

Some charity websites have advice on key phrases to put in your claim. I looked at the NDCS one, which was relevant to us. There may be ones relevant to you?

Good luck!

Another vote here for citizens advice bureau. We had a wonderful lady come to our house and sit with my Dad helping to answer every question on behalf of my Mum. She stayed for about 2 hours but it was worth it as she knew exactly how we should word things so that the DLA people wouldn't be able to deny her on a technicality or loophole. (For instance, the first form we sent was rejected because Dad wrote the date of the most recent episode of Mum's illness, when he should have written when she first showed symptoms 15 years ago.) Little things like that can catch you out. Hope you find the help you need.

I agree with 2rebecca. Don't just write what things are like on the worst days if there are variations. It's not truthful. If there are many 'worst' days and only a few 'good' days, tell them that. My DD has variable days and although labourious, I wrote 'on the worst days...' 'on slightly better days...' 'on average days...' and 'on the best days...'. She still got HRC, but at least I know that no-one will be investigating me for fraud because I said she always does x and then someone sees her doing y.

Yes I agree that it could backfire if you exaggerate or only put down information on the worst days, because as said if a medical professional doesn't back up what you are saying then the claim will look false, and also they are very experienced in these things and understand that conditions fluctuate. If you only put info about the worse days and really lay it on thickly they are more likely to think you are exaggerating or even lieing

Be honest but be thorough. Try to think of every little thing that happens on a bad day and all the help needed and write down everything, but be honest about how often that happens and what the other days are like too

It took me hours to do my forms and I even used extra pages so I could explain everything in detail, I was totally honest explained how things fluctuated (though to be fair it was not by much) and I got awarded higher rate for both care and mobility

You might also want to contact UK National Kidney Federation to see if they offer any assistance. I only say this because my DS2 was recently diagnosed with Type 1 Diabetes and we were advised by his nurses that we were eligible for DLA ( would never have occured to me otherwise). They directed us to the Diabetes UK website which has a step by step guide on how to complete the forms for kids with Type 1. It still took a while to complete and I don't know yet if we've been successful but the guidance was massively helpful.
www.diabetes.org.uk/Guide-to-diabetes/Living_with_diabetes/Financial_entitlements/Disability_Living_Allowance/Questions-1-to-17/

My DD1 was diagnosed with type 1 diabetes at the start of year, like boogler the Diabetes UK site was brilliant. Also, the paediatric diabetes team had a ready filled out form for us so we could get an idea of the keywords needed, is there any chance the team dealing with your DS migvht have something similar? DLA forms are awful :(

I do a lot of these forms with people (national advice agency) and I agree a with most of what has been said above. Especially with not 'laying it on thick' and not using only the worst days scenario. Always good to keep a diary for a week or so. Can you give a ratio of bad days or weeks to slightly better? i.e. 5:2 where he really struggles with his personal care or mobility to 2 days/weeks when he can manage a bit better.

Also, the "statement from someone who knows you" page can be really useful if you get it filled in by someone, preferably a professional, who is engaged in his care. If the care that he needs is corroborated by this professional it can sometimes avoid the DWP having to write to someone like a consultant who, in my experience, often knows all about the condition but may have little practical idea on what life is like for the family on a day to day basis

Sympathies. I am expecting to apply for myself soon... dreading it!

Thanks all.yes I did try cab and his team but got nowhere it does seem a bit random whether they can help or not. Thats why im attempting it alone. It seems very strange that this is all the help he can get unless he gives up his job. We checked and if he went part time which would be ideal he will qualify for nothing thus lose his little flat as wouldn't afford the rent.
birds How do I express his social and independent needs?
I have given up for today and am going to ring everyone to ask about dates for tests etc.
Those who said a diary,would I send that too.