Dla

[smurfette]

my daughter has sle and von wilibrands disease and can't be left on her own because she faints, she misses school because of pain in her neck and back and sometimes needs assistance dressing, she's constantly exhausted and is becoming a recluse and she was refused dal and I'm not sure why. Any suggestions?

[Lupo30]

Hi

Have they said why she has been refused - they should give you a list of reasons. A lot of the time they tend to refuse claims - I have to ask them to reconsider their decision 3 times! Have they written to her consultants? They refused me, but failed to write to them.

[kittykat68]

hi smurfitt

i was turned down and the disabilty rights advisor said this is normal procedure as the goverment are clamping down on the "spongers"?? so i appealed twice and eventually won lupo30 is quite right they only rite to your gp NOT ur consultant i asked for a copy of this form that the gp had completed about ME the person she doesnt even know and was that disgusted i changed gps . apparently as i saw different drs at my surgery each time my OWN dr did not "know me" but i said that shouldnt make a difference as surely when u see ur dr they put the notes straight on the computer whilst ur there , but apparently not , i then PAID £25,00 for MY health records back 10 years , highlighted the same symptons week in week out for all those years pre wrote a letter to the judge of the tribunal AND took every single consultant letter with me to the tribunal (i always ask my rhemy/dermy/thoracic med consultants to copy me in all letters to and from my gp and they do) they then adjourned for 6 MONTHS and then I WON yeah hhhhhh, HOWEVER it is only low care and blue badge but if i had not been on 8 steriods a day for a year i would never have had the energy or memory , i have a 14 year old son with special needs to so it is tough and its wrong part of lupus is the chronic fatigue but because ppl cant see it that doesnt mean its not there and i just dont have the energy now if i have to fight for ppi as im not allowed steriod as they clash with my methotrexate and other meds , i hope i havent consused u and i really hope you are able to appeal

regards karen

[jennyhe]

Hi I was refused DLA the first time I applied but then applied a couple of years later and got the low rate, I ahve had a blue badge for a long time but I hear theya re cutting back on those as well!! apply again and it might help if you ring the CAB and ask if there is anyone there who can help you fill out the forms please dont think I dont think you are capable but they know all the termiloagy to use hope this helps

[millyrose7]

Hi im sorry to hear this especially in someone so young i have sle and von villebrand have to have special precautions if having surgery and also having dental treatment hope you get dla sorted it may be worth going citizens advice good luck x

[smurfette]

I can't believe someone else with von willibrands disease and sle. We were told it's very uncommon and not easy to treat. How do u find it?