Any Benefits available while diagnosed with Anca Vasculitis

[longbank123]

I have been diagnosed with Anca vasculitis since last Christmas,had chemo, prednisalone etc... cant seem to get any benefits, been unable to work, but my wife works 20 hours a week, she is now suffering with ill health & still trying to work, because of this it seems we cant get any benefits & our savings have almost dried up...Any suggestions?

[hamble99b Volunteer]

you need to see a welfare benefits advisor but do not underplay your pain and difficulties. Think about your worst days and not what you can "manage" to do "sometimes". I got so used to saying "I'm fine" that that's how I answered everything - gps included. then I'd struggle home, drag myself to bed and sleep [or not] for days in great pain unable to function. not so much living as surviving.

DLA is always worth applying for, ask your gp and consultant, and any other medical people you see, if they will support you. let us know when the forms arrive as we can advise on them.

so sorry both you and your wife are going through such a hard time.

regards, sandra.

[longbank123 in reply to hamble99b]

Thanks for your kind reply, we have been to the jobcentre & were told there were no advisors available to speak to us then and tey said we couldnt make an appointment. I have applied for DLA & was refused so I have appealed. Feel I cant cope with any more forms as well as tablets

[Hidden]

Sandra has hit the nail on the head precisely. The biggest problem we create for ourselves when battling for benefits is not admitting how bad things are on bad days. None of us like to admit how this damned disease affects us as it can be disempowering and depressing. I'm unaware whether there's a further appeal against an appeal decision but if not there will be a minimum period after which you can reapply under changed circumstances (things are worse than you originally stated) if there is then let us know here and we can offer help. Sadly you just have to keep fighting but perhaps if your wife were to give up work it would reduce the stress and make you eligible for other benefits. Difficult decisions but just a thought.

Healthy wishes.

[AndrewT]

Dear Longbank,

My best advice, for what it's worth, is kep 'banging the drum' LOUDLY. You should receive benifit, of some kind, trouble is that they are all changing. You almost need a 'degree' in logistics to understand to what you are entitled. That said Do contact Ctizens Advice, phone number in your local phone book. Please do let me (us) know, how you get on.

Good luck anyway

AndrewT

[John_Mills Volunteer]

Everyone has given you such sound advice but you could also join Benefits and Work benefitsandwork.co.uk they are very helpful and you can download information to help you for just under £20 a year.

Or if you email me I can send you some documents from the site that might be of help.

Are you on the Vasculitis UK maiing list to receive the twice yearly newsletter?

My email address is [e-mail]

take care

Susan

[longbank123 in reply to John_Mills]

Thanks for your kind e.mail, I have already joined benefits and work, at present looking for a part time job just to exist, hope one comes up soon.

[hamble99b Volunteer in reply to longbank123]

I used the b&w booklet to successfully appeal my dla. It explains each question and the form near he back is very useful - you answer each point and your gp can use it to write a support letter. ask for letters of support to sent to you so you can put them in your appeal pack [copy them first].I also downloaded the "route map" and sent the details of symptoms, treatment, side effects and presentation of my condition.This is such a brilliant handbook and is a valuable resource.

good luck, sandra.

[kath12341]

Ring and claim esa Job Centres unfortunately due to governement policy cannot see anyone without an appointment and claims are done over the phone. Have national insurance numbers and dr details any hospital stay within last 12 months partner details savings mortgage ect if renting try housing benefit and council tax though esa clai good luck I have wg and work on the esa line so know how you feel