DLA how hard can it be ????.

Hi everyone
I have just got back my DLA award ,and good news i think ,Quite apart from everyone i had dealt with up to now, and having been told how really bad my condition was and would get much worse sooner rather than later, and the graphic explanations of what to expect in the very near future ,Well all is, not lost ,despite never having met me and arriving at there descision after consulting with my doctors and others ,i have been awarded the lower rates ,does this mean i am not going to progress as i was told and do not need as much help as i was advised i would, Am i missing something here ,because up to now ,it has been only bad news with anything regarding MND, but it seems there are levels set within the Benefits System known only to them working in the system that we are all allocated points, and that determines what rate we get awarded ,Now as i remember back MND was never described to me as being mild ,or troublesome, or severe ,the only word was Terminal . Can someone tell me why this can be such a lottery, look forward to Hearing your dealings with this Benefit.

[looby]

Hi Pete

I have never posted oon this forum before although I have used the info many times since my husbands diagnosis in June 2011. But we have been successful in obtaining the higher rate DLA and all the other stuff that goes with it without trouble --blue badge , free car tax etc so I thought I would share this info. We asked my husbands MND specialist nurse to help with the form, she obtained a DS1500 certificate from the consultant--this says that your illness is terminal and then you do not have to fill in all the parts about care on the form. as this is not a pleasant task she sent this info separately. The DLA decison maker rang me --my husband can no longer speak-- and after confirming the details as stated we received the higher rate. Did you get one of these forms sent to support your claim? Can you appeal and then get support to fill in another amended claim. We had the form for three months before claiming --my husband is in denial -- but eventually with help we managed to submit a claim. Hope this helps

Lyn

[pete]

Hi Lyn,

Thanks for getting back so quickly, Yes i tried to get the dreaded DS1500, form from both ,firstly the neurologist ,who just looked at me as if i was requesting someting really outrageous, and when i asked our local gp he pretty much said this did not apply, This is so wrong with this condition, half of the people who deal with you do there best to scare you to death with all the possible outcomes and you get the others who just dismiss this request as if it does not apply to your case ,Its just amazing how it varies , I see your from Birmingham , do you deal with the QE by any chance i have been referred to the Proffesor there next month so perhaps we may get more help there , Once again thanks so much ,you say your hubby was diagnosed in June last year .how is he doing , i am not sure its always denial, its just how you chose to cope with the news ,Much the same as your husband i too can no longer speak much , look forward to chatting again .

Best wishes

Pete

[looby]

Hi Pete
Yes my husband is being cared for by the team at the QE--they are fantastic!!! Not only do they care for him but they help me through when i feel completely lost- I still have many days like that. At our first meeting with the specialist nurse she talked about DLA and told us to apply, but as I said even though we got the forms my husband refused. As the months went on she asked each time we saw her and offered help. if you have been referred there then it maybe useful to ask for help to resubmit. But most importantly the team there are caring and Prof Morrison is straight talking but supportive. My husband is taking the trial drug as well as rilozole so we see them quite a lot!

[pete]

Good Morning Lyn,

Thank you for replying, how are you today, hope your well, Thats good to know , I have had one previous visit to the QE ,and indeed met our Karen, and yes she is very nice, i found her to be very quick and the examination very extensive ,while i was there also had EMG done , i guess after being diagnosed with Myasthenia at first ,i was sent for a second opinion, i am still trying to understand just how they know its MND , as very little is know about it still after so many years ,its still such a long time to find out whats wrong with you , And much like your hubby ,sorry i dont know his name, i was given riluzole , but have no side effects from taking it yet ,but dont know if its working either , you say he is also taking a trial drug ,,i would love to know more about that , and as for the DLA yes i am going to re submit my claim , after seeing the QE next month ,you take care and keep positive give your husband my best wishes ,any time you want to chat give us a shout .

all the best
Pete

[Batty]

Hi Pete,
When I was first diagnosed my specialist MND nurse supplied me with the DLA application forms and told me I was allowed to apply under special rules and didnt have to fill in all the forms, I was awarded the higher rate of full DLA.
If you search this forum there are quite a few previous threads regarding DLA.
Regards Mark

[pete]

Hi Mark

thanks for coming back , I should have not filled out the forms myself ,but you know how it is ,and to be honest mate regret i did now , I was told pretty much the same by the slt at the hospital ,perhaps Bulbar is treated differently ,for the first few months after diagnosis ,you are stiil kidding yourself ,they have got it wrong ,but its been a while now and yes it creeps up on you ,little by little ,I still cant get the DS1500 form ,which is the one you need to send to qualify for the special rules .ohhwell try again ,thanks again

all the best pete

[Cath51]

Get in touch with your local Regional Care Development Advisor, Mic only qualified for the lower rate despite my best go at filling out the forms. We got in touch with Cathy James who is our RCDA and she took over the claim and got it sorted quick sticks for us. These people are here to help and they know these forms inside out - I also think it is the luck of the draw who gets your claim form when you submit it to DWP!

[pete]

Hi Cath51,

Yes pretty much agree with that ,it is down to who gets to do the application ,what amazes me is ,knowing what i know now about MND and how it affects poeples lives so much ,it really should be less of a hassle, for you to get the help, I would, as no doubt anyone on here would swap all the benefits ,to be told there was a light at the end of the tunnel. I am just pondering who is going to work for me ,in the words of the DWP, to guide and assist me when "walking" for the not quite £20 a week,I bet there is going to be a rush for that job ??.

Cheers Pete

[Toppers]

Hi all,
I can`t belive how hard it is to get benefits when having a terminal illness. I was lucky and got the higher rate of payment but had help from citizens advice to fill in the form. There should be a way to bypass the form filling in for people who can`t be treated as a lot of the questions are stupid as things only get worse and never better. There should be certain illness`s that get automatic clearence as all terminal illness`s you will not get better, at least with cancer these days there is a fairly good chance of recovery if found early and not the death sentance that we have to put up with and only wish for a chance of some hope to make life better, let aloan a complete recovery.
Hoping for better things this year.

Pete

[Mr-Tumble]

I had to work very hard to get my DLA in the end my consultant said "dont fill all the form in"

Just your name address and other details

Then attach this form and your sorted and no more questions will be asked

He gave me the DS1500 form and within 2 weeks i was awarded top rate on both care and mobility

plus a huge back dated payment

Soon afterwards i was also awarded my severe disability benefit on top off all other payments.

It pays to have a good consultant and support team.