DLA and decline in health

saving_pennies

I get highest rate DLA care and DLA mobility. Last awarded Dec 2010

Yesterday looked at my last DLA form as I had a visit from social services today and wanted to show them evidence from my GP that was written in my DLA form.

When I put in my renewal I was using crutches to walk 1-2 meters and couldn't stand or walk for longer than a minute. I spent a lot of time in bed as I couldn't move about well. After getting the outcome: high rate care and mobility, I was assessed by NHS wheelchair services in feb 2011 and finally got a powerchair a few months later. Less than once a week I can use crutches to move a few meters but that is it. Therefore my doctor has classed me as unable to walk.

I know I have to inform DLA when my condition changes and I really didn't even give it a thought until yesterday.

Does anyone know that if you report a worsening of mobility and already get high rate mobility, whether DLA request you complete the form again?

I dread forms esp the long benefit ones when I can see in black and white just how much my body doesn't work like it should! Although maybe if I do have to complete a new form then DLA have up-to-date info so if they do communicate with ESA they will be equally informed but I'm not sure how good the two offices communicate.

rogerblack

saving_pennies wrote: »

I know I have to inform DLA when my condition changes and I really didn't even give it a thought until yesterday.

Does anyone know that if you report a worsening of mobility and already get high rate mobility, whether DLA request you complete the form again?

It's probably wise to phone them, and explain what's happened.
I doubt they'll require a full form to be filled in.

saving_pennies

Thanks Roger Black. I was worried at prospect of completing a new form and as usual things seem worst in the early hours of the morning.

I just called them, the man I spoke to was lovely. He will add a note to my file and if further info is needed I will be contacted but otherwise that is all I have to do.

When he asked if I was in the wheelchair permanently, I wasn't sure what this meant, e.g. 24 hours in a chair, so said I am either in my wheelchair or bed but very occasionally will take a few steps with crutches. I guess what he meant was am I permanently in the wheelchair to mobilise, but I still have some brain fog this morning.

And to be honest the word 'permanently' is scary. It's only this year I went into the chair and although there is no sign of me getting better, it is daunting to think I will forever be in the chair. Does that make sense to people? I actually felt a little jealous as I saw people walking down the street.

rogerblack

saving_pennies wrote: »

And to be honest the word 'permanently' is scary. It's only this year I went into the chair and although there is no sign of me getting better, it is daunting to think I will forever be in the chair. Does that make sense to people? I actually felt a little jealous as I saw people walking down the street.

Totally.
I suffer from chronic fatigue.
If I could be cured totally tomorrow by a minor operation involving removing my legs, I'd jump at it.
I can walk down the street - but doing so may make me dangerously tired, and unable to safely get back home.

We're all bumbling through life, we just have to do the best we can.
Trying not to let your abilities define you can be hard sometimes.
The DLA/ESA process is depressing as writing down on paper just how bad you are makes it harder to lie to yourself.

saving_pennies

I understand chronic fatigue - I got to it with many other conditions. I find people can't understand why I have energy to do something one day but then not again for several days or longer. The social worker yesterday was one of those people.

If there was a magic cure I would give anything for it but your right we just have to get through life the best with can.

Re benefits forms - there are depressing and also very exhausting to complete. The questions are not always straightforward yes or no questions, which they seem to want on the work capability one I just received. Although there is an option to say it varies. How about yes I can do that but then have to spend the rest of the day in bed as I am so fatigued I can't support my body to even sit up. Or yes I can do that Monday but then won't be able to under the following Monday.

sunnyone

I have never informed them of any change in condition because I already get the highest rate of both componants indefinatly and I needed full time care/couldnt walk at all when that was awarded years ago so nothing would change anyway, I can be reassessed at any time like everyone else so I make sure I have all the evidence of my disabilities in files for that eventuallity and/or 2013 whichever comes first, I have seven other serious conditions diagnosed since then of which they are totally unaware and I will inform them when they ask, not until.

I can understand you informing them if you are not getting the correct rates or if you have timed awards but the whole point of lifetime* awards was just that, they understoud my disabilities were for life and wouldnt ever improve but deteriate year on year.

*I know lifetime is now indefinate but my award was given as a lifetime award way back when DLA came out.

mouseymousey99

The change in condition 'form' is about 35 odd pages. It does take a while to fill in, but its 'do-able' if anyone else wants to know. Best wishes

saving_pennies

sunnyone wrote: »

I have never informed them of any change in condition because I already get the highest rate of both componants indefinatly ......

I can understand you informing them if you are not getting the correct rates or if you have timed awards but the whole point of lifetime* awards was just that, they understoud my disabilities were for life and wouldnt ever improve but deteriate year on year.

Thats why I wasn't sure sunnyone as I get highest rates and also got indifinite award. I had time limited awards for many years as they said they were not sure if I would improve but it seems not now.

But when I called the man said I did the right thing but as it wouldn't affect the benefit as I was on highest rates then he would just add a note to the system.

I only looked at DLA form as a social worker was coming (and she will recommend to the panel an increase in my direct payment money for personal care and social/emotional support). Plus I think it will be useful to transfer info onto ESA capacity to work medical form which has just arrived.

I can't understand why ESA can't look at my DLA to see what I can and cant do. It would seem crazy if someone on high rate mobility and high rate care (therefore need care day and night), was assessed for ESA and got very few or no points. Not saying this will happen to me but it does seem to be happening. A CAB worker told me the other day that one client who uses a power chair had a ESA medical saying she had no difficulty mobilising around the room independently. Which I guess on some level is true but there was no mention of the powerchair being used. Therefore the ESA report alone could be read as the person has no difficulty walking.

Mouseymousey99 - thanks for info on how long the change in condition form is. I know it will be 'do-able' for some but for me it would be a massive task and I would need someone to complete it for me.

sunnyone

saving_pennies wrote: »

Thats why I wasn't sure sunnyone as I get highest rates and also got indifinite award. I had time limited awards for many years as they said they were not sure if I would improve but it seems not now.

But when I called the man said I did the right thing but as it wouldn't affect the benefit as I was on highest rates then he would just add a note to the system.

I only looked at DLA form as a social worker was coming (and she will recommend to the panel an increase in my direct payment money for personal care and social/emotional support). Plus I think it will be useful to transfer info onto ESA capacity to work medical form which has just arrived.

I can't understand why ESA can't look at my DLA to see what I can and cant do. It would seem crazy if someone on high rate mobility and high rate care (therefore need care day and night), was assessed for ESA and got very few or no points. Not saying this will happen to me but it does seem to be happening. A CAB worker told me the other day that one client who uses a power chair had a ESA medical saying she had no difficulty mobilising around the room independently. Which I guess on some level is true but there was no mention of the powerchair being used. Therefore the ESA report alone could be read as the person has no difficulty walking.

Mouseymousey99 - thanks for info on how long the change in condition form is. I know it will be 'do-able' for some but for me it would be a massive task and I would need someone to complete it for me.

Things are diffrent now with ESA but Im not worried about being changed over and using a powerchair means you should get into the support group as long as your not a "ebay crip" as its being termed (and after a thread on DT I can see why :eek: I fancy a wheelchair because other people have them!) and ive got very little use of my arms/hands, Im profoundly (R)/severely(L) deaf, Im aspie etc. so if they can find a way for me to gain employment I eat my hat!

For DLA I would just keep records, any of us can get a form tomorrow and a note on the system wont change that (its random for 20% and the other 80% are targeted conditions for the RPP, spinal injuries are always ignored because they are perminant and thats the main reason for my DLA)

saving_pennies

sunnyone wrote: »

Things are diffrent now with ESA but Im not worried about being changed over and using a powerchair means you should get into the support group as long as your not a "ebay crip" as its being termed (and after a thread on DT I can see why :eek: I fancy a wheelchair because other people have them!) and ive got very little use of my arms/hands, Im profoundly (R)/severely(L) deaf, Im aspie etc. so if they can find a way for me to gain employment I eat my hat!

For DLA I would just keep records, any of us can get a form tomorrow and a note on the system wont change that (its random for 20% and the other 80% are targeted conditions for the RPP, spinal injuries are always ignored because they are perminant and thats the main reason for my DLA)

Oh I didn't did the thread on DT. Personally I would prefer not to need a powerchair. I would prefer legs (and a body!) that work as other people have them lol.

As you know my powerchair is via NHS and they don't just hand them out to anyone. In fact they are slow enough processing requests for those that urgently need one!

I am keeping a diary now of how I am on each day and also what carers do for me. Only a few lines but it will help when it comes to completing the dreaded forms.

sunnyone

saving_pennies wrote: »

Oh I didn't did the thread on DT. Personally I would prefer not to need a powerchair. I would prefer legs (and a body!) that work as other people have them lol.

As you know my powerchair is via NHS and they don't just hand them out to anyone. In fact they are slow enough processing requests for those that urgently need one!

I am keeping a diary now of how I am on each day and also what carers do for me. Only a few lines but it will help when it comes to completing the dreaded forms.

I think that it really goes in our favour that we both have NHS powerchairs because as you say they are only given to more seriously disabled people who need a wheelchair fulltime (in most areas, one or two will provide them if you can walk a few steps but in most its fulltime wheelchair users only) and dont have a body caperble of self propelling ergo most of the body dosnt work.

The adapted homes, need for personel care day in, day out wont hurt either!