Applied for DLA - stressing about things!

[Tabi]

I posted my first ever DLA form at the beginning of December...and I'm so scared!! What if they want to see me? What if I travel to be assessed and they don't think I'm ill? What if they come out to see me and don't believe I'm ill because my parents tidy and cook etc? What if I have to appeal? What if they think I'm a fake?
Aaaaugh.

[elka3131]

Tabi,
I would say 'don't worry' but that is easier said than done, I know. I posted mine beggining of Dec too and am worried aout what they will say.
They can't say you are a fake. If you have been diagnosed with something they have to beleive you have it. They may ask a physio/doctor about the degree of your condition and what they think you can/can't do.
They will understand that your parents cook etc because that should have been put on your form. I have been granted DLA beforew (due a combnation of things and this is a renewal). My mum does alot of things for me. The point of the care componant is that you recieve help from people and if you don't need help then you wouldn;t e applying for the care bit.
Does what I have said make sense? I hope this helps abit at least.
Please try not to worry aout it too much (I wish I could follow my advice). It is natural to worry.
If you have any other questions that I may beable to help with, please ask. Either on here or by PM. I will do what I can.
Ellis x

[Tabi]

Thanks Ellis. I know in theory they can't refuse me - I have the EDS, fibro, and suspected ME, and depression. It's just the longer I wait the more I panic, I guess!
WhaT you say does make sense, I did put all the "my parents do everything" stuff on the form, but it's till a worry - I guess the scariest thing is if I have to go for an asssessment... see, I think how I am is fairly normal (apparently to others, it's not!) and so I worry that the assessors will think I'm ok... Hmm, that's rambling!!
Thanks for the moral support though - and good luck with yours

[Englishgremlin1]

I hope it does come right for you, I am waiting as well and it feels like a lifetime.

hoping for good news for you soon

[Tabi]

And you too!!
They said contact them if I haven't heard in 8 weeks, that's the beginning of February - it feels like a year!!

[devon_guy]

Well my DLA has come up for review after it was awarded for 2 yrs with HRM and MRC. I had a letter to say that had written to my rheumy and GP for further info. Both contacted me to go and see them to fill the forms in. The GP wasn't great quite non-committal in his report. The rheumy however was very good and said my EDS was severe as was my osteoporosis for a male of my age. Hopefully it will all come back fine!

[Englishgremlin1]

Hopefully you will get a grant for a longer period this time.

[devon_guy]

I did get re-awarded dla but sadly for the same amount of time, 2 yrs which I was a bit surprised about.

[Englishgremlin1]

[nat05]

Dont be too disappointed by the time length Devon_guy, many of us have it awarded for 2 or 3 years. Often after a couple of re-applications they award it indefinately.
xx

[lil_miffy]

i have the pile of dla forms next to my bed to fill in too. i havnet claimed for hms till now because i was getting dla for the sight loss but no longer need it for that as i have my sight back. however im so glad i finally chose to apply for the hms because this past few weeks tings have got so bad. i cant walk now and the pain is unberable most the time now. i also have the bowel damage that causes alot of the care needs i have now.

i dant thought about this part of the form till reading this post but if i had the help ( i would define 'the help' as having the money pay a robot to help me with the things i need help with so that my mum or partner doesnt have to do it anymore') i would.

be able to go to the toilet to do my 'things' without needing someone to be there with me to do the enemas because my fingers dislocate inserting them.
i would be able to have a bath again.
i would be able to have a cooked meal
i would be able to go to public loos without taking poor phill in to help me change or get me off the loo.
i wouldnt have to wake my parents up or 'surprise phill' in the middle of the night when i have an accident.
i would be able to see phill more than once every 2-3weeks like we are at the moment because i could afford a taxi to his house.
i could go shopping with someone to help me change to try clothes on and carry my bags.

there is probabrly lots more. i guess cos i live with my parents alot of stuff gets done that i would have to do if living on my own. i know i would need someone to come in to do the heavy house work, the washing, ironing, shopping/putting it away, etc. I would also need help with some of the stuff i do for phill as his carer (can you get a carer of a carer? lol.

[Englishgremlin1]

I wouod think about adding a few that cover the mobiity aspect - for instance:
can you manage a food shop on your own?
Can you safely and without risk of falls go to visit freinds etc..
Can you get to any social activites without help?

if the answers to the above for you are no then you should include them.

Think worst day scenario and go through in your head what "normal" people do and what stops you doing the same things.

[lil_miffy]

Im not going to take my pain meds for a few days before filling in the form so that im at my worst and then can really pay attention to all the things i cant do and what i need help with. I think its very hard to think about the bad days and realise that alot of things we cant do actually would be put on the forms. When you have a chronic condition you get used to doing things differently or not at all and when asked, you seem to not think of them as being because of the condition eg I would say now that i can feed myself but really thats only if my parents go shopping, buy food, put it in places i can reach, then its only stuff that doesnt require cooking such as cereal or snack or fruit so i can just grab and eat because putting things in the microwave is now impossible because of the reacing and lifting.

I think a video diary for a week would be much better than a DLA form to show them just what help we need.

[l00pyp0u]

okay, I filled in the forms, with the help of a nice guy on the DLA advice line on 22nd june. He asked the questions so I could understand them, and everything. So I felt quite positive aboout it especially as he did the writting for me.
Then 10 days ago I got a letter from the GP, asking me to go down and see the GP for the DLA forms, took huge long list with me of things going wrong, and info on HMS, which she told me to keep, and educate the local Rheumy with. We had a chat, and I left her to do the forms.
Anyway today, recieveda phone call from DLA, "just to clear up a few discrepancies", as I was working, and had a car crash in Jan, not my fault, which seems to have kicked this off again, severely. Asking about work, and driving, was quite surprised I still had my drivers licence, and told him DLVA had previously assessed me aand said I could keep it. Said GP stated that over past couple of years I have been deteriorating rapidly, didn't realize she was that aware of what was going on with me.
And now I am worrying, he said I will hear within 2 weeks, but now that means 2 weeks of me worrying about this, and preparing myself for an appeal.

Stressed
Lou

[barkingmad]

Hi lou,

Try not to worry about it too much. The GP's never really know how we are doing functionly as we dont go to them and say I cant chop veg or wash my hair anymore or I need my partner to get me out of the bath..we tend to see them about pain, acute symptoms and for referrals. So I wouldnt worry too much, at least your GP acknowledged that you are deterioating it would have been worse if she had said 'the patient would know better than me' to each question..and believe me that happens a lot.

Donna x