New to this site.

[tinac73]

Hi everyone,

Just found this site and it has been a godsend, knowing I am not alone.

I have been diagnosed with MPA since 2010, I am starting to really struggle with work at the moment and fear they may decide to say to terminate my employment, i have worked in mental health-nhs for 11years, and i am on my third longterm sickness since being diagnosed my employers have been okay but i fear the worst is looming and i guess i need to prepare myself.

i have applied for dla and the descion was i will be paid the lower rate and nothing for mobility so basically i am getting £20.55 a week.

finacially the future looks pretty bleak and i am very worried.

i would love to hear from anybody and listen to experiences and advice you can give. many thanks.

[LynneJ Vasculitis UK Volunteer]

Hi Tina

I also have MPA. I posted a blog of my story in March when I found the site.

I was diagnosed in 2010 but I think it started in 2009. I am now in remission with drugs (Azathioprine). I am afraid I can't help with the dla but I believe it is worth appealing. There is a site that can help. I am sure John & Susan will be able to tell you about it.

I have the luxury of being retired now. The illness came at just the right time. I really do not think I could work though as I have days when I am incredibly tired and achey. It is not the MPA now it is the residual nerve damage I think. Or maybe just old age!

Having said that I feel so much better than I did. Can you get finished for being ill? That seems so unfair. Have you seen the Route Map you can download it now. I think that would be useful to you. Maybe you could show your employers it. Would they let you go back on reduced hours? I feel better after I have got up and got going which sometimes takes a while.

Things do get better but very slowly. I never knew if it was the illness or the drugs that made me tired.

I wish you all the luck for the future.

[John_Mills Volunteer]

Did you receive the email I sent last night Tina? I can put you in touch with someone who has been through the appeal process. Just remember that patients with vasculitis who go to appeal.... 70% of all appeals are upheld. I am sure there will other people in the group who can advise too.

Susan

[tinac73]

Thanks Hattie it's comforting to know I am not alone, I am 39 and I still want to work but just not able to be reliable due to illness, I am more better in the afternoons and may have to look towards that option.

Thanks john and Susan, I got your email and I am looking, thankyou so much, any help is appreciated.

[Galaxy2]

Hi Tina

I have been off work for 9 months and am now going through the occupational health process with work, at 38 i don't want to accept that I can not work again but am in such a dilemma about whether or not to try and go back at least part time or accept that I can not work. My employers have been really supportive and have said that they will adapt my job in any way to help, I know that if I don't go back now and then in the future try to look for work my long term sick record would make it so hard for me to find a new job. I don't think your employers can just terminate your employment and have to go through the occupational health process which at least gives you time.

I have been turned down recently for dla and have just appealed the decision, since my sick pay from work has run out I have been surviving on ESA which is not easy so I am really hoping to have my dla decision overturned. Do appeal, I have heard that due to cutbacks on the first application they tend to be quite hard but almost wait to see what response you make and like Susan says many people are successful on appeal. The CAB are really informative on the appeal process too. It is the mobility component I was the most surprised about and used the wording in the letter they sent me and turned it around and challenged all their assumptions. I am slowly finding out about other help available but it really is so complex and when you have always worked and never needed help you don't know where to go, again the CAB will be able to tell you what you are entitled to.

Good luck with it all and do let me know if I can offer any advice

Jenny

[AndrewT]

I don't know how much more I can add, to what's already been siad, but do pursue an appeal; to gain what you should be entitled to! After all you have paid in enough. Let me (us) know will you?

By the way Welome 'on board', the Forum, I'm sure you will find it helpful.

Good luck anyway

Andrew

[tinac73]

Thanks jenny and Andrew for your supportive words, I will keep everyone updated.

[metalback]

I've had MPA for 4 years it was picked up in aroutine blood test following spinal surgery so didn't reach the numbness stage. My bloods seem good but I am very tired all the time. I've just had Pred reduced to 2.5 and still on Aza.

I was lucky that I was already on DLA when this struck, but I agree with the others appeal it. I've also just retired having gone through the ill health route there are a number of stages and part time with variable hours is possible, I was just about coping with 16 hours + WTC.

good luck