Can any one tell me if they have been able to get DLA, if you have can you tell me how you got it, as we have been declined twice darlotyke

[darlotyke]

[infliximab74]

Hi there

I dont think any of us got it first time for this horrible disease as not many docs know about this illness. It is so difficult to fill in their forms with this disease being different every day. It is difficult to assess when we are up and down. I started applying at 16 and didnt get it until i was 25. I was determined not to give and glad i never. Dont go it alone go to citizens advice and they help you fill in the form. I was still rejected but appealed and eventually went to tribunal and i was lucky to have a dr on the panel that new what bd was and how it effects anindividual. I was given it for 3 years so had to reaply again and yes it was rejected again so we ended up back in court for ghe tribunal at that time i was severely ill in hospital so the citizens advice lady went with my husband and i eventually received it for life. I only get lower care though and higher mobility that time. The time before i received higher for both. I decided not to contest it as i was happy i wouldnt have to go through all the paper work again. Apparently there is a new thing coming in called pip and everyone is going to be re assessed even ones that have been given it for life. Just more stress we dont need. Having citizens advice with us through the tribunals was really good so i would advise you to seek help filling in the forms. Dont give up we deserve it having to live with this disease

[darlotyke]

Thanks you for your honest reply, it makes us so angry that we was declined but reading this we shall not give up

Thanks

Darlotyke

[tamirra]

My daughter also was refused the 1st time so had to go to tribunal they were really nasty on the panel and didn't seem to like us very much, and were always trying to catch us out on questions, but eventually my daughter was given the lowest amount but it does help a little, its up for review in June, so here we go again lol. x x

[darlotyke in reply to tamirra]

Thanks for your reply x

[Hidden]

Hi,

Yep I too got declined the first time. Eventually got lower rate DLA on a definate basis. Think there will be some changes coming our way in the future too as DLA is being replaced.

BD isn't well understood and dedfinatally not well heard of.

Keep trying and definatally visit your citizens advice centre. Having someone else on your side will hopefully help.

Good luck.

C x x

[darlotyke in reply to Hidden]

Thanks for your reply x

[andreafm]

There was a pretty good discussion about this before if you are interested. I have given the link below for you to look at which has some advice

behcetsuk.healthunlocked.co...

Also if you put the word DLA in the search bar above on the righthand side it will bring up some other past discussions we have had before.

Hope this helps

Andrea

[darlotyke in reply to andreafm]

Thanks for your reply and the link

[Wendymoo]

Hi there, I managed to get the lower rate first and now I have the higher rate. Its a very degrading process as you feel like your begging. It does help with getting help from the CAB to help fill in the forms as they told me there are certain words/sentences etc to use. You must put down and really stress how bad you are and only say you have really bad days and occassionally a better day. I was told to do the form as if you were having a MEGA bad day. Also to make you aware they may send you to have an assessement by a doctor or they can come to your home.

I don't envy you at all. I hope you don't take this the wrong way but it could be how you actually worded your form and really stress you re look into this. Dont give up please as I was told by CAB that they do this to see whose real and whose not???? I know how strange this sounds.

Dont give up

Hugs

wens

x

[darlotyke in reply to Wendymoo]

Thanks for your reply x

[mybehcetsxx]

hi yea its true you really do have to fill out the form as though today is one your most severe days. as bd is so up and down and has times where its dormant you would have to be applying for dla every other wk.xx goodluck

[darlotyke in reply to mybehcetsxx]

Thanks for your reply