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Hep C Discussion Forum -> Post Treatment -> Achieved SVR - when do i tell benefit people
Post Info TOPIC: Achieved SVR - when do i tell benefit people
Pablito


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RE: Achieved SVR - when do i tell benefit people
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Hi Nigel

Benefits, argh, don't even get me going!   I was sick a few years back and had to claim them.  I had had a good job for ten years and paid a LOT in taxes and then when I actually needed some support from the government I got sweet FA.  And then there were so MANY forms.  I gave up in the end and didn't claim benefits I was actually entitled to...but I guess that's the point and why they make it so hard.

Anyway, enough about my resentments.  I would tell them about SVR but expect them to try and use it to reduce your benefits.  So I would collate as much evidence as possible (fibroscan, biopsy results etc.), get your GP to write a supporting letter and provide him/her with the eligibility criteria so the letter can be tailored accordingly, and if you can co-opt a social worker from one of the services (?the hospital SW attached to the gastro team) into helping you all the better - then can navigate the system better than anyone.

Best of luck.

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.
Cinnamon Girl


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Hello again, NIgel,

I`d really like to know how you get on with this as I live in the UK as well, so please do keep in touch and keep us updated.  You`re very welcome to message me privately if you`d prefer.  

Good luck, and I hope your health issues continue to improve now the Hep C virus has been banished!  smile

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Tig


Admin

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Hi Nigel,

Just want to say welcome to the SVR Club and our forum. I'm glad you found us and have met a few of the great people here. Jill's pretty sharp on these things, and having some informed friends in the UK is very helpful. I wish you the very best and hope you'll begin to notice the improvements SVR brings, soon.

The extra hepatic manifestations of HCV are wide in scope, so clearing the virus is the first step on the road to better health. Your doctor and nurse will be best able to rate your disability and inability to work. They understand the system and are your first line of assistance when it comes to handling these government guidelines.

If you're having any issues you think we may be able to assist you with, please let us know. You're among friends...



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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nigel2671


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Thanks for the advice JimmyK, i think you are right and will act on your suggestions

 

Regards



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nigel2671


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Hi - thanks for the reply, i think you are right and i am at present writing to my Specialist nurse at the hospital to ask for a letter regarding my current health issues that i can send in to the ESA and PIP. I am feeling slightly better but not well enough to go back to work yet. I do need to tell them about the Hep C SVR but also need to point out about other issues i have, and a letter from my doctor can verify what i am telling them. Thanks again for your reply

 

Regards



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Cinnamon Girl


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Hello Nigel, welcome! 

First of all, congrats on your hard won SVR! 

I see you live in Swansea, Wales, and the benefits you`re referring to are the Employment and Support Allowance which has replaced the old Incapacity Benefit, and the Personal Independence Payment which has replaced the old Disability Living Allowance.  

I`m thinking along the same lines as Jimmy K here, that it`s your ability to work, or rather lack of it, that`s the main criterion in continuing to qualify for ESA and PIP rather than the specific diagnosis.  You clearly still have health issues that are mostly related to having had a long term Hep C infection, even though you`re making a slow recovery, and if you`re still feeling unfit to work full time it seems to me that there`s a good chance that you would still qualify.

You`re right in saying that benefits in the UK relating to disability and incapacity to work are being overhauled with the intention of making cuts wherever possible, and I can understand your concern.   It`s not really possible for us to make an assessment of your current heath though and I think your doctor would be the best person to advise you whether or not you should inform the benefits agency about your SVR at this point. 

Wishing you all the best of luck, I`ll post any more information I find relating to your circumstances. 

 

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
JimmyK


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Greetings,

First let me say I am completely ignorant regarding the benefits you mention.

However HepC itself is not debilitating nor a valid condition to claim disability against. The results or complications however can be.

Therefore ridding oneself of HepC does not equate to ridding oneself of a debilitating condition that may or may not have been caused by HepC.

Generally a Doctor would be the one to evaluate your ability to work or need to claim disability and in my opinion the wise thing to do is speak with your Doctor on how to approach the matter. He or She could still write the needed justification based on the conditions still present.

Best of luck and congrats on the SVR!

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
nigel2671


Newbie

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Hi - i have had Hep C running around my body for around 30yrs, after having tried both interferon ribavirin and telaprevir (both failed) i am now finally looking at being clear of the virus after  6 months Harvoni treatment. At present i am 4 months after treatment and still SVR.

Due to the Hep C, i now also have other health issues including Cirrhosis of the liver, Portal Hypertension, Varices, Diabetes and depression and have not worked in the last 3 years

My question is about benefits (ESA - Support Group contribution based and PIP - Daily Living component - Enhanced Rate)

 

When do  i need to tell the benefits people about the Hep c SVR? Do i wait until 6 months after treatment ended which is when, as i understand it, that you can say it is officially gone, I still have major health issues and don't feel i could go back to work full-time yet but do have more energy.

What i'm affraid of is that when i phone to inform them the Hep C has gone but still dont feel 100%, they will cut me off from all benefits from that day ( i talked to someone at the Hep C trust, and that is what happened to them)

Another person told me that the ESA are reassessing everyone next year anyway so wait until then, but if i do that, they may then turn around and say that i didn't inform them of a change in circumstance and may ask me to pay back money

Has anyone elso gone through this and can you give me some advice please



-- Edited by nigel2671 on Monday 19th of September 2016 07:43:55 AM

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