Hi Tracy,I have tried three times for DLA to no availe,I do think like yourself that those who are adjudicating claims are not up to speed on HHT.
I believe they work under a set of rules where you must as a claimant achieve a minimum number of points and if you are able to walk talk,cook a meal go out alone etc you will not get by the starting post.
The thing to do so I have been told is to work on a worst case senario,where you are having a foul time all the time.
If it were not for my wife helping me and being there in all my trying times I would never be out the ambulance,I will try a claim again, this time will be the last,and this time I will appeal,the reason I did not appeal before was because of all the medical evidence and references I provided in my claims,I foolishly thought That there was nothing more I could offer in my claim.
Mind you that said,I have been off sick some 14 year now,been examined many times by various BA doctors,and with the exeption of one time had no trouble with my incapacity claim at all,and I put that time down to a comunication problem I had with the dr who spoke very poor english.
Keep trying Tracy.
BOB.........

To be honest, I didn't even know that you were able (some times anyway) to get DLA if you have HHT. I have always had DLA anyway due to my eyesight (premature, so needed oxygen and that affected - though thinking about it, this could also be part of the cause), and I have been getting Incapacity for a while too, again due to my eyesight.

I believe it's only really been a about a year since I was diagnosed with HHT though, so you know....

I understand exactly what you mean about the cooking etc., it's all on points unfortunately.

I have not had any experince in claiming DLA but it is of my opinion when dealing with these sort of matters you need someone in your corner who has experience in government or social type claims I had a friend who once worked for one of the free advice centres in Sheffield who did this sort of thing, have you a local advice or a citizens advice centre in your area at least to give advice if not put your claim for you. There may be advice on the net at least its worth a try.I also think if you can get support letters from GP Hospital etc or some professional body who knows you and the circumstances of your situation it can substanciate your claim. Best of luck

Well done, great news to hear that you won 

wow amazing in 2003 i had been off work long term sick the dreaded stress 2 DVt one after the other in each leg and of course the usual bout of nose bleeds or epistaxis as the dr's like to call it i had to go to the dhss to apply for statutory sick pay and whilst there the pleasant young lady said i should have DLA and told me to apply, Failed as you can guess and i never tried again dont deal with those things very well

But that said have you ever tried to walk with blood gushing from your nose
how do you think you would handle a pan of boiling potatoes when i bleed my eyes stream i cant see a thing, it goes down my throat i ussualy end up retching blood clots, this just makes the bleed worse.

when bad i bleed 10 or more times a day not all gushers but bad enough

but then try appling that to questions on a DLA form, good luck! oh my employer in 2003 retired me i was a police officer with 24 1/2 years service, they couldnt cope with me bleeding and retired me 18 months before i quallified for full pension benifits, Bummer

Oh well life goes on not to bad at the mo, had a iron infusion couple weeks ago, bleeds are no more than 2 or 3 a day so i'm happy, and now run my own business with my wife my friend from the Police say Company director souns better than Police constable, i dont miss the force after what they did but i miss doing my job so to speak

would like to know how Tracey was sucessfull tho, well done and i beleive well deserved.

Hi everyone,

Sorry, I have not been on-line for some time, and I have not been receiving notifications from this site, so I guess I need to go in and check some of my settings!

In reply to the last three that posted questions: Rita; Tony and Phil - again my deepest apologies for the very late reply.

I fully understand what everyone is saying, there are no boxes on the DLA forms for us to put a tick in.  On my successful application, when there was no box, I would write alongside any spare area on the page what I was experiencing.  Sometimes adding in extra sheets of paper with my name and NI number on it.  I kept photocopies of everything and created a file of my own.

When they wrote back and I was refused, I then appealed against the decision.  It was looked at a second time and I appealed again.  This eventually took me to a tribunal.  I had the choice of a paper hearing or an oral one.  Naturally I took the oral hearing, because that is what we need.  I sat in front of a panel of 3 people, all asking me questions.  It was scary, but, I was able to put my case across.  I also had the opportunity of free speech at the end of their question.

When I left the appeal, the panel were in no doubt about my condition and awarded the DLA. 

I know it is a long drawn out process, however if more of us do this and go through the motions.  The DWP will be more aware of our condition.

The other thing that you can do at the beginning is get hold of your local Disability Centre, where they have helpful advisers who help to fill in these forms.  I went to my and the guy there was very helpful and supportive.  Although he didn't understand fully, he did a nationwide search to see if anyone else had ever had a case like this come up, and informed me that mine was the first ever to appeal and that it would set a presidency for anyone else applying.

I strongly urge you to reapply and continue battling, like I did, and go to appeal and request an oral hearing.

I am due to go in hospital again for another op on Monday, but will login and look out for any more questions when I am back home.

Good luck, and please, if I can help, then just ask!

Tracey x