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Sought DLA help...and found it...

Discussion in 'Social Security / Disability Benefits' started by Roseanne, Apr 2, 2010.

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  1. Roseanne

    Roseanne Registered

    Hello dear Lupie friends,

    After many months (actually years) of me struggling on in pain, my family, friends and finally even my doctor suggested I apply for DLA. I have printed off the forms twice before but never quite been confident enough to fill them in, so this time I rang up and asked for a date stamped form to get my behind into gear. I had looked on the et for other people's advice and stories and read the forms and was very confused and despaiing at the whole thing, so I decided to swallow my pride and head for the disabiliy action group where I live...called DIAL in most places.

    I did notes before hand, and went to meet with the guy for a meeting that took two long, emotionally draining hours - best thing I ever did. He talked me through my experiences of living, and strated picking apart the way I had adapted to living, how much pain I was in all the time, as well as how much I had cut out of my life, and put it all into the form...including the bits I didn't think applied to me, but he pointed out how they did.

    He advised me that it is a common misconception that the mobility component is based entirely on a physical ability to walk. Turns out the way they decide, is that you only get higher component if you completely cannot walk, ie in a wheelchair. The lower comonent is not for people who can walk even a little is actually awarded for people who have some kind of mental issue concerning being confused, fatigued, panicked, overwhelmed or forgetful. I had dismissed these aspects of my experience, but he said it was the best thing for me to put down for that level.

    On the care components, the higher rate is for people who can't do things by themselves day and night, the middle component for either day or night, and the lower level for those who need help for part of the day - and it is mostly around meals and self-care. I was telling him what I thought were funny stories about my difficulties doing my teeth, brushing my hair, and cheating between days when I couldn't shower because of pain/fatigue by using baby wipes and talc (yeah, I know...pathetic but it works for me...)...and he encouraged me to write it all down. It was quite depressing for me, but at least getting my struggle acknowledged really helped.

    After the form he told me that they would send it off and chase it, as well as take me through the appeal if it got rejected the first time - which it often does as a matter of course. He then took me through everything else that could help, sent emails for an OT visit and gave me info on groups and things to do in my local area - including activist groups on some aspects of disability living that I had had a strong opinion about. He even chatted to me about his own difficulties, and I was able to give him some tips too!

    This guy was amazing, and I recommend anyone who has lupus to set up a meeting with one of these groups to help you get the help you need...Yesterday I felt drained and depressed talking about my condition, but I woke thismorning with a renewed sense of hope, and the feeling that at last someone was fighting for me and for Lupies everywhere!

    Will let you all know how it goes...

  2. LolaLola

    LolaLola Registered

    Glad to hear it Roseanne,
    We can't fight all the time sometimes we need to rest but we always bounce back. I know all about using baby wipes!
    x Lola
  3. debatat

    debatat Moderator

    Hi Roseanne, I am glad that you were helped and I totally understand about the baby wipes!!!! lol I hope it comes through soon for you!

    Take care
  4. Katharine

    Katharine Registered

    Well done Roseanne :)

    Thanks so much for posting about this; hopefully it will encourage others to seek the help that they deserve. All too often we adapt and put up with what we've got when we could improve things a lot if only we could pluck up the courage to ask.

    We don't have the same groups here to help us out with such things but my GP did that for me and told me to apply for the equivalent of DLA here. The forms here are ridiculously simple but they are accompanied by doctor's reports and my rheumy did an absolutely fantastic report that really told it like it was. I also had the neuro reports and a neuro-psychological testing report which was very useful for proving the memory and concentration issues I have (as I don't have lesions on an MRI).

    I was very lucky and was awarded on my first go. It doesn't change anything directly financially for me as I already have money via our heath insurance and they only pay if you don't have that but it does make a big difference to how we are taxed and that is definitely worth it.

    I hope that it goes well for you :fingers:

  5. Ooohmekneeshurt

    Ooohmekneeshurt Registered

    Hi Roseanne,
    You must have seen someone quite experienced in 'form filling'; however I'd suggest that the higher rate for mobility is NOT based upon one not being able to walk, but is based on the distance you can/cannot walk without being in pain or breathlessness. I know people who get the higher mobility rate, they can walk, but not very far without it having an affect.

    In the great British way (and part of the problem) you will most likely find that each question has a qualifiying points award system. That is why it is so important for people to tell the DWP about their difficulties. What we find is that we get used to the changes we have to make, and those changes we then find being part of our normal life.

    I first realised this when after quite some time I noticed my diet had changed. Cooking rice and pasta is easier than mashed potatoes, but I had been doing this for a long time before I realised why I was doing it. You know those plastic seals on top of milk cartons........ I was having to pull them off with my teeth, because I could not grip them. I cannot use parts of my kitchen cupboards. There where lots of little changes in my house that had come about simply over time because I had to change things. We get so used to these changes, and even forget them. So its very important we tell the DWP every little thing.

    Somewhere in Room 102 there is a civil servant who reads your notes, and makes an arbitory points award for each issue; based upon the total number of points in each area of mobility or care will then result in which award level you will get.
  6. Susan Wilson

    Susan Wilson Registered

    Hi Roseanne,

    I'm in the same position as you, so found your blog really interesting, like you I have had the form on two different occasions, applied once then was refused, so I have been a bit down about things in general - your blog has inspired me to give it another go and I will seek out help to complete the form this time, thank you and good luck with your claim.

  7. jellyjazz

    jellyjazz JellyJazz

    I must agree with Ohhmekneeshurt (Sorry don't know your real name but great user name!) about the award for higher rate mobility. I recieve higher rate mobility and use a wheelchair but i also use crutches to walk or a stick.

    Glad you went to get advice but maybe get a few opinions from different professionals? I went to my Dr's and hospital to get a rounded opinion on DLA which resulted in me re-doing my form!
  8. gingertoni

    gingertoni Registered

    I used dial to help me complete my forms fingers crossed it will make a difference, they were fantastic and gave contact numbers for ot assessmnet wich I had today and have now lots of things to help.

    Any idea how long the claim takes to process I put mine in in December?

  9. countrylass

    countrylass Registered

    Thats so encouraging to hear.thankyou for taking time to share.

    hope you feel brigther soon after such lengthy appointment....
    so wish you well for the claim.
    i only got low care thats it..........and my partner nothing he had low care before that.
    so annoying..........

    take care
  10. Jessica1

    Jessica1 Moderator

    Hi Roseanne
    What an encouraging thread :) I also hope that it will encourage others to apply.
    Thank you,
  11. TracyJN

    TracyJN Registered

    I don't know whether anyone has noticed, but this thread dates back to 2010....
  12. ElephantEyes

    ElephantEyes Registered

    So it does! I'll lock it now
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