[hot_2001]

Hi all,

I have been turned down for DLA now twice and was wondering what help and advice i can be given to strengthen my case.

I have sent lots of evidence but a lot of it they have not taken into consideration, how to i make them understand how the lupus effects me, they have said that where they believe i am ill and have an illness there isn't enough information to say how it effects me.

So any advice will be excepted,

jaimme (hot_2001)

 

[LolaLola]

Hello , know keeping a diary can be tiring but it really would help you get a clearer picture. Do you live with family? Do they have to do certain things for you. Can you open tablets for yourself, rinse and dry your own hair,cook properly for yourself, not just a snack?

Does it take you too long doing things so that it is just not practical? Are you depressed? Do you have side effects from medication? How is your memory?
Also how far can you really walk without pain, and I don't mean half kill yourself. Try counting the steps.

Hope this gives you a few ideas.
x Lola

 

[bugsy]

Hi Jaimme :hello:

I was wondering if you knew about the organisations that are out there to help disabled people. The one that i am aware of is called DIAL, i understand that they help you fill in forms for DLA and incapacity benefits etc.

Here is a link to the DIAL website http://www.dialuk.info/ so that you can find out if there is one near you.

Have you appealed against the decision about been turned down for DLA - (i think you only have so many days to appeal) but i think if you contact DIAL they will help you prepare for the appeal hearing.

I hope this helps you. Good luck :luck:

Take care :hug: Jo :hug:

 

[hot_2001]

Hi all

Thanks for all the advice so far i shall put it into good use, I have appealed against the decision twice now, i am awaiting for the relavent paperwork to come through.

I have a place called brighton and hove federation for disabled people that i belong to that have also offered to help, i am about to call them for an appointment to see how they can help.

Hopefully we can get it sorted and put an end to the stress.

lola lola i am depressed and i am on 40mg of clitropram which only takes the edge off, i have also had to see a psychiotrist and endless amounts of councilling.

Thanks again to everybody

please if there is any more advice out there i would love to hear it.

many thanks

jaimme (hot_2001)

 

[blueisis]

Hi Jaimme

Im so sorry to hear of your problems, its a complete nightmare isnt it when you feel so rotten.

I have claimed dla for about 6 years now, but each time, I have had a professional person complete the forms for me. I must say I applied for it the first time round and was successful, and then I was under the local hospice who completed it for me and then the last time I completed the form with the local CAB. They have all the knowledge needed to answer these forms in the way which perhaps we dont and they use the correct phrases and terminology which seems to me to be what is needed on these forms.

Contact your local CAB, they may have a dedicated DLA person who Im sure will be more than happy to assist you. The person I saw filled in the forms for me so I didnt have to write them myself (my writing hand doesnt work properly sometimes) and I backed it up with copy letters from hospitals and discharge summaries from being in St Thomas.

Remember, also, that you should be filling in the forms on the worst possible day you could dream of (that is what the CAB told me).

I wish you luck with everything.

Hugs to all

Julia x

 

[LolaLola]

Dear Jaimme,
Brighton is a nice place to visit, I have been a couple of times and my family love it.

Do you have a Community Psychiatric Nurse or Support worker who could help you to include the depression aspects of your case? It is good to have some input on the claim from the people caring for you. Sounds like you have a hard time.
I have always done my own forms,but was very fortunate to get awarded indefinitely. It is such a help.
x Lola

 

[mog65]

Dla

Dear Lola

Ive been turned down by 3 DLA tribunals who said that they did not beleive that Lupus was even a condition!! It was such an awful experience that I was psychologically very badly affected by it. I have had to pay for my own car adaptions (am only allowed to drive hand controled car as my legs dont work very well), hoist for my wheelchair etc as DLA just do not seem to acknowledge the effetcts of Lupus. I can sympathise with your frustration and how awful it is when the powers that be tell you that what you say is not true!!

I am just bracing myself to try and apply again - my Consultant has written a very strong letter about the tribunals opinon about Lupus ( but they didnt beleive him before anyway).

Use whatever local Disability Rights groups you have to assist filling in the forms as they seem to have the knack of getting the all important wording right.. ANd good luck. If you get turned down again, just dont take it personally and keep applying.

Take care

Sarah

 

[chilli]

Gosh......its very frustating. I think that we're are at the mercy of our local DLA office and whoever reads our application. I suppose that the more people apply on the grounds of lupus and get it, the more likely your appliaction is to suceed????

I am just as confused...........as for not recognising Lupus.......that just makes me crazy mad.

Keep going and do what you have to in order to suceed with your application.

Good Luck x

 

[hot_2001]

Hi,
I have an appointment tomorrow at 12pm to go through all my DLA paperwork and to see what needs to be done next. I have had many people tell me to keep a diary which i have bought a new note pad to do, the only question i have is how is it best to present the diary in a normal diary form or in bullet points on recording how bad my days are?

I will keep everybody posted on the outcome and progress.

love and hugs to all

jaimme (hot_2001)

 

[Clare.T]

Hello Jaime
You need to present the facts in the most impactful way possible. The diary form is just for you to get the truest picture possible since we tend to forget or gloss over or be unwilling to acknowledge how bad things are. The focus has to be on the worst times and on the impossible
So go through all the points, that is,focusing on what you can't do. I think they ask about each function such as washing your hair, and you have to indicate how often you can't do whatever it is ?

Oh I have just noticed this is out of date but it might help somebody. How did you get on?

Good Luck
Clare

 

[Clare.T]

Disability allowance is not awarded on the basis of the disease you have but on how it affects you, whatever it is. Leaving aside conditions like being blind or having no feet or legs or mental handicapped or illness.
As far as SLE goes, the problem is that the term lupus means very little because symptoms are so varied from person to person and it is not progressive in most cases.
You have to say what you are unable to do and I think it has to be likely to continue for at least 6 months.

Clare

 

[hot_2001]

update

Hi all,

Thanks for the warm felt feelings, I have finally had the appeal date come through 28/07/08. I was amazed on how soon it was. My nerves have started already, shaking and really worried.

The lady at the Brighton and Hove federation of disabled people has been such brilliant help, she is aiming for high rate mobility and medium rate care but we shall have to see what they say at the end of the month.

Things health wise has taken a turn for the worse had a relaps at the end of april and have been on prednisolone since then the rheummy has now decided to finally give me some meds to help I am now on arcoxia 90mg and lansoprazle 30g, they are helping with the joint pains but i think i will have to say that now i am having muscle aches as well.

Well enough about me, I hope everyone is well?

Again thamk you and i will keep everyone posted on the outcome.


lots of hugs to all

jaimme (hot_2001)

 

[bridie]

i know how you feel ive just been to tribunial turned dow again 3 time i get the lowest of 71 pounds a month they are giving me that cause i cannot prepare a hot meal.. i cant shower for myself either because of my wrist and fingers does that not entitle me to some more money. i think it depends who reads your forms wether they are in a good mood thats true but sad for us..

 

[DnA]

I don't understand the logic behind how they award it either. They couldn't refuse me the mobility compononent as I can't walk without crutches.

However, I was only awarded the care component when I was moved to a purpose built disabled flat (grab rails, sit down shower, lift, wheelchair accessible, etc,) as the house I was living in just wasn't disabled friendly! I compared the application forms and found no difference in what I'd put... This time I just got approved without even having to appeal!

Anyway, good luck with tribunal and don't give up.

Sammy

 

[hot_2001]

Today is the day!!!

Well the day is finally here and i am a complete reck, i am so worried as i am feeling i am doing this all by myself thanks to my best friend who is also my carer/pa she has got me sorted with paperwork, I have no idea if i need anything else as my husband for some reason now isn't as supported and hasn't helped in any way.

Thank you for all your kind words that have helped me to fight on with this as now it has come to light that although the money is handy, i am fighting this for all of us that have lupus to get it more recognised as a disability.

This is mainly because two of my next door neighbours have been awarded DLA one has ms and the other has me, both of these have not had it turned down once.

So off i go now to not only fight for me but to fight for everybody with this illness/disability.

jaimme (hot_2001)

 

[hot_2001]

Hi all,

Well it was really nerve racking the tears came as well as the shakes but i am pleased to let you all know that they awarded me the high rate mobility and the medium rate care which is going to be back dated to 22/11/07 and it has been awarded to me for 3 years so i don't have to re apply till 22/11/2010.

I want to say thank you to everybody who has given me advice, let me rant and who has thought of me while this nightmare.

you are all one in a million.


THANK YOU!!!!!

love and hugs

jaimme (hot_2001)

 

[Lily]

Hi Jaimme :grhug:

Thank goodness I am glad they saw fit to to award you this and that you are going to get back pay too! It is nerve wracking but thankfully you won't have to worry about going through the process again for a while. :congrats:

love
Lily

 

[pottydotty]

Hi jaimme, well done and congratulations, I get middle care and full mobility and it has helped so much, now have a cleaner twice a week and am finding pacing myself so much easier.

 

[bridie]

congratulations..ive actually got tears in my eyes feel like crying for you not sad tears happy ones thats absolutely brilliant.good on you.love bridie

 

[sjink]

Congratulations Jaimme,
You deserve it all but should not have had to go through all that to get it.
Sara
x