Just been refused disability living allowance, does anyone else get it for vasculitis?

[longbank123]

[Hidden]

I have GWP (WG) and managed to get DLA at the highest rate for both mobility and care approximately a year after falling ill. At the subsequent renewal three years on I was given the same award for life, although I'm sure the forthcoming DLA replacement, PIP, will see that decision reviewed.

I presume you feel the decision was incorrect so suggest you appeal your decision and pay to subscribe as a full user to the Benefits & Work website (benefitsandwork.co.uk/). I'd also suggest you contact your local Citizens's Advice Bureau for assistance in completing the appeal process.

Ensure you amass as much evidence of your illness as possible (my application had in excess of 20 page of supplementary information), include records of your appointments and drug regimes and if possible obtain written support from your consultants regarding your degree of disability.

Please feel free to contact me privately if I can help further.

Healthy wishes.

[Hidden]

p.s. If it takes me a little while to respond please excuse me but I've just got out of hospital.

[longbank123]

Hi Martin, thanks for your reply, I didnt expect to be refused so quicly, as it took me all my time to fill out the form supplied, dont think i could manage to do it again. Concentration not what it used to be.

[Jann]

Hi,

I agree with Martin's suggestions. However I have also messaged you with some additional information.

[Ziggy]

Hi what Martin says is exactly correct! I have just been through it all and I know what it is like to fill all those pages out!! I used the bought guidelines off Benefits and works and then also became a member. I think I did similar to Martin which I attached another 20-30 pages of information. They have to know exactly how this strange disease affects us! I ended up with Higher Mobility and medium Carer. You may also need to attend doctors review - all the answers/guide/help you can download from the site Martin mentioned. You really have to take your time and do it slowly over days!

I included any letter I had a copy of from a GP Consultant etc. if you do not have many ask your GP for copies! even just the most important one's! when it asks for Future appoints and also asks you what tests you have, write them down from day1 to any future appointments you have, include everything even GP's. When the section says state your doctors if you have a lot do a separate piece of paper list all your GP's, Consultant Therapists and anyone who is dealing with you health condition - of which you may ask them to write a report for you, give the Doctor's name, full address, telephone number, why you see them and any supporting evidence! I took photographs of my aides - like I have a house emergency line so photograph it and show the number of who to call so if they want to check they can phone them. I have been in a wheelchair, used crutches at one stage photograph them! I have not used them for a while but they are in the loft for the incase day! and believe it or not I had to bring the crutches down as I am having waking problems now. Walking sticks, hand splints, back supports even my mattress and pillows which have to be TEMPUR these are all aids of my daily life. A Fan as I have hot flushes during night, my computer screen has to be big and I need a special slide flat mouse, the chair I sit in adjustable, mobile for my computer. I can not reach ny windows to open and close them but have a broken pick-up stick that does it for me get someone to photo graph you on how you use it. An pillow back support cushion wedge - photograph it - these are your aids. Flat floors to stop tripping and the best way is to walk around your house and see what helps you? do you have a light cooking pan are you safe doing what you do? look at the whole thing as a Health and safety issue to you. I have cerebral vasculitis and when my partner and I go out I forget what I am saying and he will pick it up from there all put me back in track - this is under CARE, as I need someone when going out and forget what I am saying, can not find the word etc. send them copies of being registered disabled - send them as much as you can! Cross reference everything to the extra pages so they know what applies to what questions.

Cutaneneous Vasculitis P-anca

I have several conditions and have written the Illness/Problem as title then ,my name followed by the words "own Medical History' your National Insurance number, Your Hospital number, your NHS number, Then any and all the doctors, their addresses and info followed by what the condition is i.e Vasculitis, P-ANCA positive, stroke etc.. They ask for medication list send them your repeat prescription and then write it down again! so I have one sheet that shows Medication Times another a list of medication and at the end in brackets what it is for or what condition i.e High Blood Pressure. I have also listed what I use the money for i.e Teeth - hygienist, check up, and work required - CARE. Yearly Medical Prescription Cost - Mobility and Care because if you did not have your medication it would affect your mobility and it affects you own care to yourself!

Sorry this is long! BUT I can not lie! and when it comes to the awkward question "Can you Walk" well Yes! but the answer should be NO!? to get mobility allowance - so I wrote a whole thing about getting around out doors. as YES I can walk but face pain when I start walking - then you need to explain all this! this is the only exercise left for me to do that does not flare the Vasculitis up and am Obese (tell them everything) and the only way I can keep the weight off is by walking each day (in pain).

It's a lot of work but once you have it all keep it in a file and when you see your GP, Consultants emergency into A&E you just give them your file! it is my life saver.

I hope this is of some help and reforces what Martin said but tell the truth as there are 'security police out there watching us!' but if you can answer the problem you will never have a problem if you get questioned. Apologies and any queries on what I have written please ask me to try explain better as the brain does not come across toooooo well! DON"T GIVE UP take your time to do it again and use that site and become a member, it is worth every penny!

[longbank123 in reply to Ziggy]

Hi ziggy, many thanks for your detailed e.mail, it gives me a bit of a joilt to put forward what I need to say, to get what I am entitled to, rather than just give up.

Mant thanks again.

[carlos1979]

I was diagnosed with (GPA) Wegener's Granulomatosis in 2009 and still fighting for DLA.I am now longer able to work, my mobility is worse than ever. My memory and mood is at an all-time low.

I think it is very unfair that some get it and others don’t. I think some people have been awarded it under the Labour Goverment and don’t really need it while others that do need it keep getting refused.

I would not bother wasting any money on a site to help you fill in the form, take it to the citizens advice, or an organisation like DIAL or SYCIL. These are the two that I use in Doncaster I am sure that you will find the similar organisation in your area if you Google it.

I wish you good luck with it and remember don’t give up

Carl

[carlos1979 in reply to carlos1979]

Just to clarify, when I said some people get it and don’t need it

I DO NOT MEAN ANYBODY WITH VASCULITIS.

[longbank123]

Carl I do understand what you meant, it does seem very unfair, that some get it & others cant. Thanks for taking the time to message me, all the best for the future. I will keep on trying.

[hamble99b Volunteer]

I wish the "security police out there watching us!' would have followed me for a while, then I might still have my DLA.

Thanks to finding this site and some sound advice, I am appealing my decision with a little more hope. I agree with getting the w&p booklet, it explains it well. Best of luck with your appeal.

sandra b

[Hidden]

@ carlos1979

I'm afraid that in some regions CAB and their counterparts are no longer able to help with 'form filling' and I can assure you the Benefits and Work membership at £20 is well worth the investment (read the testimonials). It comes with a 7 day trial and full money-back guarantee which for me makes it a no-risk investment.

[carlos1979 in reply to Hidden]

Hi Martin,

Thanks I have paid for the year membership. Two reasons I have a ESA medical on the 29th June 2012 and from what people have told me I will be getting kicked off that, even though I have only been on it for 8 weeks.

Also my DLA appeal is waiting to be heard at Leeds, I had to choose a paper hearing as I am just not well enough to travel and to be

Interrogated like some sort of Terrorist.

I am 33 Years old I have worked full time since being 15 years old. I did not ask for this Illness nor to be out of work because of it yet the system and this Government are determined to penalise genuine vulnerable people while the dregs of humanity who will never work get everything.

It is so, so wrong

[longbank123]

I agree with you, its full of information & worth every penny, made myself a member now.

[braindamage]

From experience, it seeems that all requests are routinely denied - in fact I was told at my appeal that it was 'policy' to deny benefit initially! I was fortunate in that I enlisted the help of my local 'Council' benefits advisor who helped with form filling and accompanied me to the tribunal and took charge of my case. I was awarded full DLA and Middle care component indefinately.

Don't give up and do appeal if necesary. You should also apply for a 'Blue Badge' as it help with hospital visits etc.

I wish you all the best.

[longbank123]

Many thanks for your reply & kind support.

[AndrewT]

I get DLA at the 'middle' rate, fro mobility. Appeal, the jugdement, I had to, some years back; no trouble since (with fingers very crossed!).

AndrewT

[Cinders13]

Appeal their decision. I did and they sent a doctor out to me and I ended up with higher mobility and middle care. Mine isn't for vasvulitis as I didn't have it at that stage but plenty other illnesses. If you don't get it, appeal again until you do. good luck.

[mickt]

Hi longbank,im a bit behind the posts looking at there dates .Ive GCA/PMR ,plus a load of other things auto immune wrong with me ,click my name and add sticky blood hughes syndrome to the list .I claimed PIP the replacement for dla in march 14 ,as been ill health retired from my job in march ,im on a modest pension and my wife still works .god love her.I had a home visit health assessment on aug4th ,been awarded standard daily living allowance on 12 th august .Very lucky tho 7 mth is a while in all .I spoke to dwp on phone they told me still not got letter its been posted out Mon 11th she said .Its a long slog but keep on claiming what you are entitled to .Vasculitis takes many forms ,all your meds and supportive letters from gp ,consultant ,occ health docs if dealing with them like I had to.Good luck to all with your claims .I got a advice worker to fill out forms for me and she was great, they are personal questions which can play on emotions ..deliberate I think......so a person who can draw things out from you that you could never do on own.Disability north Tyneside mine ,there will be local ones to you!!

[Isobelle4]

Hi Longbank,I`ve just picked up your query of 6 years ago when you were querying if you were entitled to disability living allowance,did you have any success ?I`m currently trying this avenue but not getting very far,I have Wergeners Granulamatosis diagnosed in Feb 2011 after a flu injection !