Autoimmune hepatitis

Hello,

I am so tired, I do not look ill, I was diagnosed with AIH in 2009, had ups and downs with my condition, after an initial bout of sickness from work , due to jaundice (was not allowed to work.... Oooo I was yellow). I have had days off work. I am now 53 years old, the fatigue is getting to much, especially when working 12 hour shifts, in a retirement home. Has anyone had any luck in claiming any form of benefits. I want to continue working it's just the hours and living on my own???

Sorry for the waffling. I need help please

Diana

13 Replies

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  • You could go for esa which is employment support allowance first few months you have to hand a sick note in either once a fortnight or once a month. But best one for you if you still want to work is pip which is personal independence payment but it is a long process and also get some advice off citizens advice with the process and forms, good luck x

  • Thank you

  • I was diagnosed with AIH in February last year it came on sudden and at first they thought it was alchoholic related even though I didn't drink that much . I was so tired like you luckily I received what benefits . Although that's stressful cos I'm under review after only 6months so my payments have stopped and I have to attend a face to face assessment. Trust me if your breathing you can work according to them so I will see how it goes. If I was you I would apply for ESA and PIp if you have to give up work the remember though they don't award it on your condition but how your condition effects your day to day activities. Liaise with your doctor as he will need to back this up just base your claim on your worse days as I know you can have up days and down days. I felt just like you I thought I was doing ok but tests said otherwise and I needed a liver transplant ASAP. Just a thought if you end up on income support they can send you on courses etc free to improve your job prospects this would enable you to train for a less demanding job eg office computer work and you would meet new people. Good luck with everything. Ohh and citizens advice could help you .

  • Some about typing errors you can tell I've no office skills lol

  • Thank you

  • In UK PIP...you can work and isn't means tested with other money coming in...daily living or/& mobility...I didn't get it last yr but my fatigue is so bad work as to give me shifts in the am as I need to sleep a lot of my day..plus have other things going on(spine issues & no thyroid issues/meds)..I'm in the care sector too but couldn't work full time if I wanted to !!!😩😩

    Love my my job to bits and as long as I can want to keep working *

  • Under the Equality Act you may be able to negotiate a 'reasonable adjustment' at your work place to enable you to carry on working. If the reduction in hours significantly hits your income and ability to manage household finances then you could possibly claim Income Support to top up your wages and this then might lead to additional assistance with Council Tax and Housing Benefit if you are in rented accomodation.

    gov.uk/income-support/overview

    Employment and Support Allowance is and out of work benefit for those who are deemed either too ill to work altogether or require assistance to reaccess the work place (Work Related Activity Group). This benefit is changing I believe and new applicants might not now go into the Work Related Category. gov.uk/employment-support-a...

    My hubby has cirrhosis due to AIH and there is absolutely no way he could work due to his chronic fatigue, unpredicatable health, confusion, memory issues and more. He has been able to claim ESA and is in the Support Group but only because he has been found unfit for work.

    Personal Independence Payment is a non means tested benefit for those who's long term ill health or disability impacts on their ability to do a number of Daily Living or Mobility Tasks. It is a battle to get PIP - we had to go to appeal tribunal the first time round even though hubby had just been listed for transplant, had the impact of Hepatic Encephalopathy Symptoms and more. If you are able to dress yourself, toilet yourself, feed yourself, manage household finances, read, walk more than 20 metres or manage journeys on your own you would find it difficult to have a successful PIP claim - the fact that you are able to care for others in your retirement home job even with significant fatigue it would be hard to convince a PIP decision maker that you can't care for yourself. The details for Personal Independence Payment are at:- gov.uk/pip/overview

    My hubby gets PIP (Enhanced Daily Living) and basic rate mobility because due to his chronic fatigue, confusion, memory issues, slowness and difficulty with deciphering instructions, directions etc. He can't manage a journey alone, would struggle with his medication, liaison with doctors, hospitals etc. Struggles with reading (and understanding), struggles with socialisation and more - he couldn't even understand or complete the claim forms. He scored absolutely zero points at his first face to face and as we say had to go all the way to appeal (success) then second time round had the result above.

    There is definitely support out there if your hours have to be reduced. If your local council has a Welfare Rights Advisor they are worth speaking to as they can look at your situation, your current finances and advice fully what benefits / help you might be able to claim - Citizen's Advice Bureau if you still have one in your area would offer the same help.

    Whatever route you go, I wish you all the best.

    Katie

  • Wow Katie, this seems unbelievably hard. They seem determined to wear people down in the application process. It's a good job you're there fighting your husband's corner. :)

  • Too true, it is a battle and we are just steeling ourselves for the next round 'cos PIP is due for review/renewal July of this year. They've shortened the form to ask whether things have improved, worsened or not changed. In hubbies case no improvement in health or symptoms (only better blood results) BUT that doesn't guarantee we won't get called in for a face-to-face again and have to go through all the stress, upset, getting called liars (basically) and all that over again.

    I use the excellent resources on the Benefits & Work website to help with the form filling and hubbies consultant has always been supportive and provided excellent supporting letters.

    We are stressing already and it's stopping us from planning anything for the summer as you only have less than 2 weeks to complete the paperwork once it arrives and we can't be away when that comes. It is ridiculous the amount of stress & anxitety it causes for already very poorly people who would actually far rather be out there working than living one more day with ill health.

    Katie

  • Hi Katie,

    I really hope this all goes well for you. I can imagine that it is enormously stressful and as you say, it puts more pressure on people who are genuinely suffering with enough to deal with anyway. The problem with many illnesses, including AIH, is that people can look at you and think "you look fine to me" and of course there are always people trying to milk the system, making it difficult for everyone to tell the difference between genuine sufferers and those who are actually liars (or bending the truth).

    At least your husband's consultant is supportive, but I'm sorry to hear that it is delaying your ability to plan for the summer. Let's hope they get their act together sooner rather than later.

    I wish you all the very best in these endeavours and well done you for being so determined in the face of all these difficulties. :)

  • Thank you Katie for all the information, certainly given me something to look at follow up, when I have a day off.

    Diana

  • Hi Twinny63. I used to work 12 hour shifts too but found it too much also. I went back to working core shifts 7-3 and12-8. And I just worked 4 consecutive shifts then had two days off and I found this more manageable. Speak to your manager see what she can do to help you. Take care

  • Try age concern or citizens advice 53 I know but try as a first step and localy carers together for form filling

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