DLA stopped

[Din]

Hi there

My friends daughter, has lupus nephritis plus all the other nasties that go with Lupus, diagnosed at 13, she is now 16. She is the bravest strongest young person I know. Mum on the other hand is finding it hard to come to terms with the prognosis. and to try mums sanity the system has decided to take her daughters DLA away.... of course we are appealing.. but the stress and the financial worry is taking its toll on mum.
Anyone in the same position or been there and got the t-shirt, would love to hear from you, sometimes it helps to know you are not alone.

Love you all
Din :rolleyes:

[LolaLola]

I am so sorry, in recent years I have been very fortunate with DLA. I know they always look at things again when a child reaches 16. I hope you can get good support with Reports from Docs. concerned etc.
x Lola

[lupus chick]

just wanted to wish you and your friend luck wit sorting out the application for her daughters dla in some cases the citizens advice bureau can be of help

[mumoffive]

I am sure the DLA office has to do these things to try and save money assuming only a small percntage of people will challenge!
Unfortunately the people with the most energy to chalenge ae probably those with the lest difficulties! Please keep at it! Get reports from doctors and other profesionals who will support the claim.

We were turned down for night are for our daughter on first appliction. She needed 2 hourly tube feeds and regular suction and positioning to avoid her drowning in her own seretions and reflux. Apparantly on their first look at the claim they felt she had no neds greater than a child of 10 months without her disabiliy! They did look again and we got high rate from then on.
I am sure they don't atually read the forms or have any knowledge of caring or somone wih rarer problms. If the diagnosis is on their list then things are straight forwrd but or anyhing les usual they guess i am sure!

hugs. hope it all works out an they ge a nice back dated check!

[Din]

Thanks for your replies, we are still fighting... and I'm positive that things will be sorted, eventually!! It's just so frustrating when your trapped in system of forms, computer generated letters and automated telephone answering machines. "if you've lost you will to live .. press zero" :wink2:
Denine

[Clive45]

A good starting point is to ask what has changed between the last review and now... in other word why did the so called medical assessment team (who work for the DSS remember) decide that the young woman does not need DLA or a lower rate. Once you find out this info... and you have every right to be told... go back to the doctor and discuss.

Appeal the decision with the GP's help.

I don't get any benefits at the moment, as I am recently diagnosed and still in good health, but I had just this problem for my elderly mother who has another type of illness. The DSS just tries to wear you down until you simply give up trying. The forms and appeals system acts as a deterrent. So please don't be put off, you are not alone and you are fighting for what is by law your legal entitlement, through statutory legislation.

Hope she gets her DLA back, along with backdated payments.

Clive.

[familymatters]

when my dad had his stroke he was already on DLA (for a trapped nerve that was being treated with medication) we then appealed as he is suffering from paralysis therefore my mother had to become carer (for which you can only receive carers allowance for when you are in a higher band) they sent us a letter stating that they would increase it by £1.40 a week! which has made us a bit weary of whether or not to apply for it now he has been discovered to have lupus. i understand where youre friend is coming from it is totally demorallising and an unfair treatment to those who are in need all my love to your friend and her daughter xxxxxx

[herbwormwood]

I suggest you get a third party to help with this through an appeal, ideally the hospital social worker. Ask either the young lady's consultant or ward staff on the ward where she was a patient to refer you to the hospital social worker.
CAB are also an option but they are not so experienced with the medical conditions and often there is a long wait to see someone.
It is best to involve a third party because they know best what to put on the forms and what questions to ask.

[debbieyeates22]

Dear all.
Well i know what you mean by the dla being a right pain in the neck.
I put in for it and lost 3 times, iam now in a wheelchair, and need constant help, how ill do you have to be i thought.......i went to court a week ago to appeal it and won! the higher rate for both parts for 3 years.I had been fighting for this since December 2006, they have had to back date the whole of the payments right the way back to 2006.
I would say to anyone i know that its very stressful but don't give up, there are millions of pounds that sick people could claim if only they knew they could claim them.
Good luck and let us know how you get on!
hugs
debbie xx

[Very Itchy]

Hi Din
Sorry to hear of all the problems with DLA There seems to be no ryhyme or reason to their decisions. I have identical twin girls with identical bladder problems. One was awarded higher rate care the other was turned down flat. I appealed against the decision against the non award and was awarded higher rate care for my appeal.

It just seems to be it depends who you get and what side of the bed they get out of.

Good luck with your friends daughters action, I hope it all works out

Sam
X

[herbwormwood]

DLA is awarded for a specific period of time or "for life", it may be that the young lady was awarded DLA for a specific period of time and once that time is up she needs to apply again.
DLA is not awarded on the basis of any illness, it is awarded on the basis of disability and how the questions about what she is able to do for herself are answered. This is why it is important to get help when filling in the forms.

[Very Itchy]

I totally agree about help with the forms. I had some help from DIAL, I am sure they are in different parts country too

The lady I saw was wonderful, it was a free service. She told me that not only is it down to the information that you give but the way that you describe the illness affects you. They look for key words and sentances when the clain is being assessed

I know it sounds a bit of lottery but all the help we can get can only help
Sam
X

[sandra hb]

i am just in the process of appealing at the moment, an independant doctor came to the house for all of 20mins and has there was "little or no signs" of lupus & that i do "odd jobs" (fetching my grandads pension from post office) that i no longer qualify for the motorbility scheme. it,s just very frustrating to have to keep fighting.