DLA

[kaysie]

I have systemic lupus and APS i've had a PE and TIA in the past the fatigue at present is unbearable and at time i know it sounds silly i feel like i'm on my last legs and i have now been refused DLA, should i appeal??

[emmaj]

Yes definately - a lot of the time they reject the first application anyway - its a numbers game. If only one person out of a thousand applicants dont bother to appeal then think how much money that has saved them!! Make your doctor aware you are applying for it, and they will be asked for a reference, plus your consultant/s. Somebody on here gave me a great tip - apply on the form like your having your worst day - and answer the questions like that. I have DLA and somedays I am ok, others dreadful fatigue,joint pain,double vision,lock jaw etc etc... Im awaiting a lumbar uncture to rule out MS, so if neurologists compare the symptoms to be as bad as MS then why should this illness be dealt with any different, best of luck x

[taffydaffy]

To right sweetie you appeal In America you have to have a lawyer and go to court to get Disabilty and on the list for claiming Apls is right up there with all the other terrible illnesses Good Luck Kaysie x

[kaysie]

Thank you taffydaffy and emmaj i will do that, Good luck emma with lumbar my son just had his x x

[kaysie]

I apparently got refused due to answers on my claim and reports from my GP?? can i get report from GP do you know?

[Storky]

If you PM me with your email address I will send you the guides.

[KellyO in reply to Storky]

Will you please send it to me too? My email address is [e-mail]

Thank you!

[ltespain]

We almost all will always get 'failed' based on our claims due to the nature of their questions and their perspective on 'capacity'. Appeal and mention in any papers about the fatigue aspect as for most of us that is part of our limitations - so yes, I could go to work and stand for 10 mins BUT I couldn't do it on a regular basis during the day, let alone on a regular work basis.

However hard it is to consider the worst day as we all like to be positive, this is indeed the time you have to think of all those niggles, pains and limitations.

[TJSTICKYBLOOD]

I'm in the process of appealing for the third time the good news is I won my first two .I find it annoying decision makers don't understand Aps where my friend who has ms similar syptoms to me but he thinks I am worst he got full mobility and full care.

[Sue2803]

I am in the process of applying at the moment, no doubt I will get refused, this seems to be the norm but I will appeal, I have to. Want to reduce my hours at work and this is the only way I can afford to do it.

[carolgrinddal]

what is dla

[Storky]

Remember it is NOT the condition that you are applying for DLA for it is the EFFECTS of the condition.

So sit down and write down all the symptoms that you have. Write down how they affect you. Do they have a name? Dizziness - how does that effect you? Does it stop you from moving around? Do you need somebody to help you because of this? Cognitive ability - Do you forget things, How does that affect you? Give an example of how it affects you? Pain - Where is it? How often do you have it? Does it affect your mobility? Do you need somebody to help you when its bad or to get around when its bad? Medication - Do the effects of your medication effect your ability to function? How? I could go on and on. This is what you have to think about.

Every single question has to be approached from this angle and you should be giving an example of a situation of when it effects you and name the condition.

So .....example: I have APS. This causes me to have balance problems and very bad dizziness. I also take medication for chronic pain that adds to this. I need somebody to help me when my balance and dizziness is bad to get about especially outside incase I fall. One day I was out and had a bad attack of dizziness. If I had not got somebody with me I would have fallen and would not have been able to get home. They were able to help me to a seat and allow me to recover so that I could get to the car and be taken home.

Hope this helps.

[kaysie]

Ah thank you so much for all your responses i really appreciate it x

[Herb]

Its essential to be specific about what you struggle with and why you need specific help. If the space for details does not have room then attach a sheet of paper.

Get advice from your local disability advocacy project with appeals.

[TJSTICKYBLOOD]

My form was filled in as suggested above and i still got turned down.My friend who has ms has the same mobility problems as me our wording was almost identical and i sent additional proof he didn't he got full mobility i got nothing so even though it should be about the difficulties we have I still think the condition plays a part.The dwp handbook suggests that APS patients are fine unless recovering from a stroke.

[emmaj]

i was just about to make aother pint and forgot damn this aps ha!! it'l come back to me oh yes............. i had help from the locoal council who sent someone to help me fill out the forms, would you be able to contact your locoal council and ask them?

[emmaj]

that should have read another "point", as bad as i feel at the mo im not at that stage yet ha ..........

[kaysie]

I have to appeal against there decision and i have also contacted my gp who will give me a copy of their report they sent to DLA. i havent even got the strength to appeal everything is a struggle at the moment, my friend said she will help me do the appeal, CAB is a waste of time every time i go its mobbed with people queuing. thank you so much for all your help x

[Susandraper64]

I have APS, Lupus which is on remittion, cervical and lumbar spondylosis and fybromyalgia and I got turned down first time I applied - went to appeal and won. Then someone decided to make a malicious phone call and my work collegues told them that I didn't have mobility problems - and they just took it all off me in December - I also suffer with depression and they even took the care component off me because no one at work took the time to research or wonder why I had so much time off!! At work when I first developed my bloodclot they accused me of lying and thought all the doctor appointments and tests that I was having were not real - and the Disability Doctor I had to see for an assessment actually said he had never heard of Hughes Syndrome - how can these disabiliity doctors profess to know how a condition affects you if they don't do their homework and find out about these conditions?? I've nearly lost my home and have been left with terrilbe financial problems because of this and believe me you don't really get a lot of money but you get accused of all kinds of things because you try to do an 18 hour a week job which is sitting at a desk?? You try to be part of society even with the pain we suffer and they still try to exclude us of make our situation worse..I have an appeal going through with Mind Advocacy - its going to take months!! I contacted my MP for Chelmsford and he has written to DWP about this...I blame the government for this...

[tim47]

On a similar thread I have mentioned the website benefitsandwork.co.uk as being, in my opinion, the best site to get advice on benefits and how Hughes patients might use that advice. I get their newsletters regularly and, to show how good they are, I wanted to just quote the first paragraph of their latest newsletter. It concerns Incapacity Benefit-but it might easily have been a DLA patient. I think it sums up the advice available and might be a very useful resource to members here. I have no connection with it whatsoever. Here is how their newsletter started ;-

Incapacity Benefit To ESA Support Group With No Medical

“Have recently been transferred from incapacity to ESA support group without having to go for a medical. Used the material on this site to make a better case for myself. . . Benefits and Work is easily the best resource for helping with your claim.”

Droopy

end quote

I hope that it will give some of you confidence and help when everything seems stacked against us with the DWP