Disability Living Allowance ?

[chilli]

im not sure if this is the right forum to post this, but has anyone that lives in the uk, managed to successfully claim disability living allowance (DLA) for lupus?????

i have been advised to apply, but remember reading somewhere that they do not recognise sle as a 'disability' ??? i'd be interested to hear of anyones' experience in the UK. thanks again

[elisabethm]

hi how does your lupus affect you do you have other problems with it i was only diagnosed with lupus 2yrs ago but i have been on DLA 9yrs i have other problems aswell as the lupus but there is no harm in applying for it have you spoken to your own GP about it as he has to fill in part of the form aswell as you do where do you stay are you in England or Scotland i have a friend in England with Rayns disease and she was turned down for it but i have told her to appeal all it cost is the price of a stamp hope this help you:)

[mandy_au]

Hi,

I can't help with knowingly with the UK system, but here in Australia (I'm assuming being part of the commonwealth we'd share similar guidelines?) the pension is granted less by the conditions name and more by what you are able or not to do. My advice would be to gather all your medical history and have your Specialists fill in the paperwork also, the more you have the less the government can argue about it. If your Dr's etc are signing their name and stating you are not well enough to work, then people who are not medically qualified can't argue the point .. and if they do & you have the inner strength you have the right to appeal the decision.

I have recently been granted a pension, but I was anxious leading up to it for many reasons, including the "what if I'm not approved"etc ... overall it wasn't too bad or long a process and it has given me some peace of mind.

Best of luck to you :)

[karen.w.]

Hi

I am in the uk & receive dla..I was awarded mine for having rheumatoid arthritis as I was wrongly diagnosed for a number of years..
however last year when I received some forms that they send you every so often to check on your condition I had to put lupus instead but everything was fine & nothing changed.

as elisabeth said the severity of your condition will be taken in to account..I receive mine even though I don't have any organ involvement but my lupus affects my joints quite badly..personally I don't think you will have any problems..if you do I would appeal as mandy said..it's quite common to have to appeal.

also I would get some help filling the forms in,citzens advice & oh I'm sorry I can't think of the other place??:rolleyes: they specialise in dealing with this kind of thing.

hope this helps a little,the very best of luck to you :luck:
please keep us updated
best wishes..karen x

[Lily]

Hi there,

I agree with Mandy in that here in Australia at least it's granted more on your inability to do things than what conditions you have been diagnosed with. Reason being that Lupus affects everyone so differently. Some may be disabled and some are out there living full and productive working and home lives.

Another important factor here I think is that your doctor has tried and you have complied with trying various medications and other measures to help control the disease process and improve your quality of life. If you have and you still aren't well enough to work that is also in your favour.

Mine was granted over a year ago, first application because of my obvious inability to hold down a job in any way shape or form.

Good luck,

love
Lily

[Clare.T]

Hello chilli

DLA has everything to do with how difficult it is for you to manage daily and self care activities plus mobility needs, and nothing to do with the actual diagnosis or whether you work or not, nor is it means tested.
In applying you need to focus on your worst days which many find a depressing experience, since as a coping mechanism we live from one better day to the next and don't normally dwell on our limitations or even fully recognise them. There are several threads here about it, plus some useful addresses in 'stuck posts' above. You can download the forms online and get tips on how to fill them in.
You could start by carefully considering everything you need to do from hair washing to veg peeling and simple meal preparation, how much help you need and the varying difficulties.

Very good luck !

Clare

[LolaLola]

Hello Chilli, Yes, I receive DLA so does my Daughter, both for Lupus.
I wish you well, and Clare is quite right to suggest you start looking at you daily activities, maybe even carry a notebook around for a few days. If you can get DLA it is a great help.
x Lola

Neither of us had any problems getting it.

[maria therese]

hi im maria and new to this site i hav just been reading about DLA as i hav been advised to apply but i am working does this mean i cant apply? x

[Clare.T]

Hello
You can apply even if you are working :) For some people it makes the difference whether they can continue to work or not.
Good Luck :)
Clare

[mumof3]

Hi Maria Therese, it makes no difference if you work or not. Just remember that when you are filling in the forms you have to think of your worst day.i recieve dla, and got it 3 yrs ago for fibromyalgia. i have just been diagnosed with lupus. Hope your claim goes well.
mandy:)

[chilli]

thank you all for the advice and suggestions. i will definitely apply, i have had the forms for around 3 weeks now and i just cannot find the energy to complete them..........not to mention it is so long and my hands/wrist are really achy so i cannot write for long. however, i will try and do a little each day until i finish it. i will let you all know how i get on. keep your fingers crossed for me !!!!!!!!!!

[ronyjo]

hi my name is ronyjo and new to this site i live in cheshire in the uk, i would just like to say that i received dla for 4yrs it was up for renewell august 2007
and i didn't get it back i appeeled and lost that as well i am now haveing to go back out to work i found a little job in a laurndry but i am finding it so very
difficult, i am waiting to see some one from the jobcentre plus i am 53yrs old
who else will employe me after being out of work for 5yrs and not reliable.

[mandy_au]

It's really sad to hear you are being treated this way. Are you receiving medical certificates for any/all days you are missing? If possible keep a copy of all to go with a new aplication. Also what kind of Employer do you have & does this person or any other Staff that may work with you see your struggling to get through days etc.? I ask because adding some of these peoples references I think would back you up higher above the medical evidence and persistance of your doctors/specialist & your own forms. Something else ... if you enjoy working where you do (on your better days) is there anything you think your Employer may be able to provide to make the workplace less of a struggle for you?

Wishing you lots of luck & inner strength,
Mandy

[larraine]

Hi everyone not been on in ages but had to let you all know that ive just got my award letter in after renewal and have been awarded dla indefinately (Thank god) this is after 1year, then 2years then 4years of awards so it is possible just dont give up as like me you have to be honest and keep fighting. Hope i encourage someone else to fight too

[Salopsally]

I applied last year when I could hardly move at all. Didnt get it coz they said I wouldnt be like that for more than 6 months. Just coming out of it after 2 years.. but there ya go. Ive never had anything for nothing and dont expect to get it now.
Sorry.. bit upset and down in the dumps tonight.
Keep trying.. Im sure it is worth the effort in the end. Good luck
Sal x

[Clare.T]

Congratulations Larraine -such good news and I am sure it will make life a little easier. It must be wonderful not to have to worry about it being renewed.

Sal, I am sorry you are so low - many hugs.
Perhaps see you in chat soon or you might like to update on the forum ?

Here's to better days !

Clare

[Stacielee]

Hi,

I got DLA, highest rating for mobility and mid for care. I applied 5 weeks ago and got it and also the money which was back dated. I was surprised I got it so fast. I have been told horror stories by people who have been fighting forever to get it. I don't know what i did right to get it so fast but I am happy with the findings. Now, I am waiting to get incapacity benifits, I applied 3 days ago on line. We will see if my opinion of the system stays the same! I also have SLE. It just depends on the way it effects each individual. I am unable to work because I can not walk well.

[tizmee]

im not sure if this is the right forum to post this, but has anyone that lives in the uk, managed to successfully claim disability living allowance (DLA) for lupus?????

i have been advised to apply, but remember reading somewhere that they do not recognise sle as a 'disability' ??? i'd be interested to hear of anyones' experience in the UK. thanks again

yes we have the same problem i was on dla then they stopped it ive just re applied and am waiting

[tizmee]

yes we have the same problem i was on dla then they stopped it ive just re applied and am waiting
watch this space

[cemc]

As others have said, DLA isn't about the name of the illness, its about the level of disability. I have actually been granted both high level care and mobility and don't even have a diagnosis yet. It is really difficult to fill in the forms and you need to get the best advice you can with how to actually word your answers. I found the www.bhas.org.uk website to be absolutely excellent. It is also useful to get the disability advisor from CAB to check over your form, and take a copy for themselves - in the event you have to appeal. The other thing you really need to do is go visit your GP and update them on your level of disability. They will almost certainly get asked to confirm what you have put on your form, and if you haven't actually talked to them about what you find difficult or need help with, then they can't confirm it and chances are you will get turned down.

[chilli]

well.......I DID NOT GET DLA..... i am really peed off about that. I am going to appeal but dont hold out much hope now. Its funny how these things can knock you for six.

I tried to apply for a community care grant to modify my bathroom and instal a seperate shower unit because getting in and out of the bath is getting ridiculous and i have slipped a few times and as my bath is parallel to a window and i am 2 levels up, i have panics about slipping and falling through it to my death (how very dramatic of me!).........BUT THEY TURNED ME DOWN.

Theres only so much rejection a girl can take. I am being a sore 'loser' because i have a friend who applied for it to replace things that she had already....and got it and went out and bought something completely indulgent. I know of many people who are getting full dla without any 'real' disabilities and i am sooooooooooooooooo effin mad at the moment.

i just need to catch my 2nd wind and plan my appeal.

any ideas???????? i cant really go to the cab, bec. our local one is pants and you have to get up really early to queue for ages without any guarantee of being seen. i have agoraphobia so going out is difficult anyway and staying put any where for any length of time is a problem for me.

sorry for going on..........

[LolaLola]

No wonder you are upset.
I don't really know about your condition,but I am like you in that the local CAB are actually not very good. Have a break for a few days , apply for all your paperwork back for your appeal,you could try phoning and asking for an explanation too, but I doubt if they wil tel you much.

I do get DLA so does my Daughter. If we can help you in any way we will.
x Lola

[DnA]

Hi Chilli

Sorry you didn't get DLA - if you can't use CAB - try your local Welfare Benefits Office, just phone your local council for the number. My hubby used ours, they came round to our house and filled in all the forms and were prepared to accompany us to an appeal, he got approved as soon as the forms were resubmitted by them.

Also if you need adaptations - have you been in touch with your local Occupational Therapist? I didn't bother wait for a referral, but rang them direct and they came out and left me with a range of aids to make life easier.

I do understand about DLA - I have had the mobility part for years now as they can't deny I can't walk, but they wouldn't budge on care. I had to move to a specially adapted 'disabled' flat and then they granted it straight away when I reapplied! This makes me angry as my condition hasn't changed, just my address.

Good luck

Sammy

[goldielocks]

Hi Chilli
I've been trying in vain to get DLA as well, i got turned down so i appealed, got turned down again so went to tribunal and got turned down again! I despair i really do. I work full time because theres only me and my son at home so it's up to me to keep a roof over our heads, because i continue to work, they think i cant be that ill. I've tried to explain that im running on empty and somethings got to give soon and im gonna end up in hospital without their help but they dont want to know. It makes me so mad because half of these people at the DLA department who decide if we're entitled to it or not, havnt even got a clue what lupus is or how it affects us. Im going to keep on fighting for it and hope you do too. Good luck and keep me updated.

Goldie x

[chilli]

Have sent off my appeal form and was helped by a local advice agency. however, i am thinking that it will have to go to tribunal as there was nothing different in what the agency wrote to the information i gave the dla soooooooooooo i will have to wait and see.............................

[weeelizabeth]

hi i also have tried 3 times for dla and been refused,i have sle ctd raynauds,fingers like sausages a broken bone in my foot no one seems to care except other lupus sufferers

[chilli]

well, i am still waiting for the decision on my appeal for dla........they said anything up to 11 weeks.......which is ridiculous, but thats beauracracy for you.......takes 11 weeks to re-read an application???

as for my appeal for a ccg to add a shower to my bathroom......well i had a telephone interview with the lady that was looking at my appeal and she said from the start of our conversation that she would uphold the original decision......so thats that.........for now as i WILL re-apply after the required time and ask for different things. Apparently, asking for a shower is considered a 'major renovation' and as such does not qualify? (hmmm) i explained my situation to her and she said i should look elsewhere.

I am over feeling agrieved now!!!! i will try again and see what other help is available once i re-group.

to elisabethm- i have not had a tribunal yet..........and im hoping it wont come to that!!!!!!!!!!! yikes.....

[baju]

im not sure if this is the right forum to post this, but has anyone that lives in the uk, managed to successfully claim disability living allowance (DLA) for lupus?????

i have been advised to apply, but remember reading somewhere that they do not recognise sle as a 'disability' ??? i'd be interested to hear of anyones' experience in the UK. thanks again

apply, i also have sle & claim dla for lupus, on the grounds of mobility & pain.