Disability Living Allowance (DLA)

[Matt]

Unfortunately I have no advice to offer, but I certainly understand your frustration (though for me it was trying to do college - only lasted a month before the health deterioration was too much to have the energy to continue).

[Bob]

Hi Janet,just a line to say from my own experience I would not take the asprin as it thins the blood and makes it easier for a bleed to start and harder to stop when having a one,I am sure your dr would come up with an alternative,
You have my profound sympathy re your wanting to work on,I think most of us have that t shirt,I know that by my own work time,good workmates and an understanding manager are vital.
Good luck

BOB..........

[philbarto]

Hi
  Like you I am working and like you suffered embarassing nosebleds on a regular basis and to the point of having blood transfusions following big nosebleeds. I too felt like giving up work but then tried to look for alternatives firstly if I could stop the nosebleeds that would be a great stride no more embarassment no more transfusions and the bonus of having the energy to carry on working I had Youngs procedure or full nasal closure of both my nostrils apparently the nosebleeds occur when air passing thro the nose irritates the tiny blood vessels and causes nosebleeds. I had this done over two years ago and can honestly say I have not had a nosebleed of any kind since.
           I like you discovered I had a PAVM in my lung I had it treated by inserting a coil by angiogram insertion thro the main artery in my groin.
            I like you discovered I had two avms in my brain 1 small and 1 very small I have had them both treated by gamma knife or stereotactic radio surgery.My consultant did not mention too small for treatment in fact the smaller the easier to treat.
            I am still working and retire in just over 4 years time and I am completely delighted in having done what I did. If I can be of further help do not hesitate to contact me  best regards  Phil

[rainbowmum]

Hi everyone
I dont post much but have enjoyed reading the info this site has to offer
Im on the `right side of 40` , have relatives with this condition, and have lost close relatives due to its effects of blood loss whereby the body couldnt retain  blood via transfusions

I have applied for DLA 3 times in my life over the years, the most recent in November last year.
I was refused and asked for a review and letter of explanation...the letter of explanation for refusal appears to have disregarded everything that I am trying to get accross about my bleeding disorder HHT
I also have bouts of depression and have recently been diagnosed with Discoid Lupus
I have now written them another letter (4 pages - and despite putting down my consultants names and trying again to put my point accross, Im not feeling too hopeful that they`l overturn their decision)
Im going to my GP in a couple of weeks (popular GP where I have to wait that long for an appointment ), but she is more aware thatn the others in the surgery of the effects of HHT
Any advice on my situation would be most welcome - thanks in advance.x

[rainbowmum]

Just forgot to add - I would also prefer to work but my condition has deteriorated

[rainbowmum]

Hi!
Heared back from DHSS and am now told they will review their decision before this goes  to appeal, which could take 11 weeks
 (Im sure theyre just covering themselves for time and Im also pretty sure they`ll turn me down again)
This time I will appeal - got nothin to lose but my sanity and patience at filling in the forms - which in itself brings on a nosebleed :-) Ironic x

[passerby]

You could write a book on the unwritten "rules" of the benefit system - things like ALWAYS appeal (you're expected to), never accept a hearing on paper (the odds are very much against you) and you have the right to re-claim after a few months, so USE IT until you succeed!

Fortunately, someone has! What you need is the Disability Rights Handbook produced by the Disability alliance each year:

http://www.disabilityalliance.org/drh34.htm

You'll need a lot more research to find the other unwritten "rules" (good welfare advisers know what they are), but its a good place to start.

Best of luck!

[rainbowmum]

Thanks for the reply
Ive been researching like crazy - sometimes think Im goin round in circles lol - any way Ive now been sent a copy of all my notes and my gp said she`ll give me a letter of support - Ive also contacted my local CAB who will represent me at the hearing.
Fingers crossed I`l get somewhere :-)

[Tracey]

Hi rainbowmum,

I am sorry to hear that you are having such trouble with your application.  Keep in there, keep fighting.  Have you got a date yet for an oral hearing?

Tracey 

[rainbowmum]

Hi and thanks for your reply

I havent hgot a date yet but hope I dont have to wait too long

My bleeds are now now so heavy and occurring more often so I guess it wont be long till I start needing transfusions too...Ive been fortunate enough to have had the heaviest at home and do get a bit panicky to say the least when I go out
Anyway, I know I`l have to get on with it till I see my new and recommended consultant which will be in the next few weeks
Will keep you posted

[rainbowmum]

hi again- got my date for the tribunal and its 5th June
Needless to say Im already gettin worked up about it and only got the letter yesterday
I`l contact CAB after the bank, holiday and hope that they can get me a rep on time
Keep you posted

[Matt]

Good luck 

[rainbowmum]

Thanks Matt
Citizens advice have given me an appointment for Monday 5th and the hearing is on Friday - Ive  coincidently got an appointment tommorrow with my new ENT consultant and wonder could I be bold and ask for a few words  of support in writing  from him to support my claim?
Not used to this type of thing and hate asking for anything but I`l maybe suss him out when I meet him and then decide 

[philbarto]

I think the more people you get into your fighting corner the better
best of luck keep us all posted with the outcome
Phil

[rainbowmum]

Hi and thanks-
Im really annoyed because I had to cancel that ENT appointment that I was waiting on so much and will have to wait a few weeks on another - I`ve had to have emergency dental treatment and couldnt lift my head - never mind go anywhere 

I`ve been worried I wouldnt be able to make my CAB appointment but think my swollen face is starting to go down after a terrible few days - so I`l hopefully make it on Monday...at least its took my mind of the tribunal for a while but I know its really looming now

Im just gonna have to cope with  that and tell it like it is and wont be suprised if the stress and weakness gives me a gusher of a nosebleed - just hope these people at the tribunal are decent enough to me
Gonna read through my notes hopefully on Sunday

Will let you all know how I get on (though goin by some peoples accounts of how their illnesses affects them, and being  being turned down I do wonder!!)
Its worth a shot anyway and I think that DWP should be made more aware of HHT and the effect it has on people and their familes
Will keep ya posted
x