Invisible illness and benefits

Hey hey...

I've never claimed benefits, I went to school, college and then work and haven't stopped since then.

Now I find myself unemployed and looking at the very real possibility that I am gonna have to "sign on". Let's face it who is going to employ someone when they tell them you're on the waiting list for a new liver and at any minute could get a phone call and would have to drop everything and go and then potentially not come back for six or more months. Add on top of that you may get a number of false alarms prior plus days off for hospital appointments and the likelihood that you'll have above average sickness.... blah blah blah

Anyway. From what I understand a lot of the benefits we can claim require face to face interviews/assessments? We've probably all experienced what it's like having an invisible illness, friends telling you you look great, never really understanding how you actually feel despite you're outward appearance. I know this is the case with me. So what chance do we really have in one of these assessments?

I'm a big lad, 6'2" and look relatively fit and functional. To look at me you wouldn't think anything was wrong. I realise that you back up what you are telling these guys with medical certificates etc but when they see me stride into their office it's Shirley got to put them in doubt.

I understand the reasons for being thorough but Shirley it should be once you are diagnosed with something like we all have it should just be a matter of a tick box exercise, it's not like we can fake a good sick cough to our boss to cover up a duvet day.

24 Replies

  • I would suggest you look at carer organisations to help with form filling

  • just hope with your dr letters etc they don't request a face to face interview. They don't usually if you have medical backup with your application. Fingers crossed. I'm in same boat always worked as a theatre nurse. I can't anymore , hated applying for benefits and now if u can pick up a pen and speak on phone your fit for work lol

  • in the first instance apply sick.... get a support letter from gp and consultant put all the things down that give you problems and make sure you don't underplay the problems.

    hopefully it will that way be a paper application not face to face..... get some help from citizen advice when filling in the form and any other bodies that canadvice you.

    if you get a no appeal straight away...

    you will get some leeway for being on transplant list. im also waiting but haven't been able to work for 18years and look well so as you say no one can see it!!!! it took a fight but I eventually got there. good luck with the forms.... you are entitled to help just bury them in evidence of what you can t do and they have to give in. best of luck cazer. x

  • For Employment & Support Allowance you should send in as much medical information as you can plus a sick note at the start of your claim to say you are unfit for work. All we did was the initial form plus a GP sick line saying unfit for work due to Auto-Immune Liver Disease & Cirrhosis. Hubby was put straight into support group with no face-to-face as he was obviously still attending hospital regularly as you will be. Initial claim was in 2012 and it has continued ever since with no further follow up (touch wood).

    He also gets Personal Independenc Payment (turned down at first face-to-face but got at appeal) & last year fresh claim went through after face-to-face with an increase to basic rate mobility too.

    Provide information, they won't seek it even though you tick boxes to allow them to contact your medical team. Ask as many of your medical team as possible to provide letters of support and on the question about attending a face-to-face put a note to say you are obviously on standby for a liver transplant call and that will affect how far you can travel from home etc for the assessment and obviously hospital appointments will always come first.

    My hubby was just about to be listed for transplant with his first PIP claim and scored zero across the board after face-to-face (nurse was a b*t*h) but at Appeal Tribunal scored enough to get enhanced daily living.

    Wishing you all the best, Katie x

  • Hi Katie

    Do you know if my husband would be entitled to it if I am working full time. He reckons not. He is currently not working as too fatigued and on the transplant list for last six months ? Thanks

  • He can get esa if your working under 24 hours a week. And pip you get regardless if your working or not, that's if they find him sick enough.

    You can also do a benefit checker online

  • The full details for ESA are at:-

    I don't work full time - just part time self-employed and I have to provide time sheets and income details. Any income above and beyond whatever the threshold is gets deducted from ESA payments.

    PIP you can get in work or out and with your hubbies chronic fatigue I would think about that. Yes it's a pain but it's amazing how much fatigue affects in daily living and mobility categories. My hubby gets Enhanced Rate Daily Living and Basic Rate Mobility and his main symptom is the chronic fatigue and the confusion, memory, concentration issues. Unable to follow an unfamiliar journey on his own or ask for and comprehend directions etc..

    PIP details are at:-

    I also can't recommend enough the guides to completing forms etc. that the website Benefits & Work publish . In the absence of any Citizen's Advice Bureau near us I used their guides to complete hubbies 2nd PIP claim paperwork and although it was still stressful we got the award. First time we had to go all the way to appeal tribunal as they scored him as if he were A1 fit - just as he was listed for transplant. :( :(

    All the best, hope hubby doesn't have too much longer to wait for his T/P.

    Katie xx

  • Thank you Katie for this useful information. X 😀 Certainly lots to look into

  • he can get esa but also dla. dla is not means tested at all. he still should be able to get sick. in the first instance get instance go to gp to be signed off then apply... gp should be able to back him for dla orpips but you'll probably need advice doing forms as othershave said.

    i get esa and dla and my husbsnd earns buti csnt work due to awful fatigue nausea etc etcetc. good luck cazer.

  • Oh thanks Caserta for this. Definitely will start looking into it all x

  • PIP has replaced DLA now so you can't apply for DLA anymore and anyone already on DLA will over the next wee while be reassessed and moved over to PIP.

  • I hope you find help soon. I feel sure. On a waiting list is a massive tick box for you to be able to claim help. With how ever you look. You are ok on the out side but the health service will realise they do not put a liver transplant to a healthy person.

    I would ask at your local benefits place.

  • It's definitely not a certainty that you will get just because your on transplant list, I was on it and I didn't and have been fighting them for 2 years, people who are terminal are not automatically liable either it's a sad state of affairs

  • I claim pip and esa and a wonder man from a care agency in my case age concern - though I'm not old enough - helped me - good luck !!

  • Hi identity, I am on esa support group. I have been now for a good 3 years. I used to have to send in Drs sick notes to start with but after two face 2 face assessments I no longer have to give them anything .I am however going to claim pip .due to the fact that my liver is now progressed to f4 end stage and I have just had a test on my nervous system as my dr thinks I have either neuropathy or parasthesia. I am affected each day with insomnia; tiredness and other things. Im not sure how it works with waiting for a tx but I am sure you will be ok .just takes a while to sort things out

  • Esa for me and I went for pip but was turned down I am in court in a weeks time over it after 2 years. Anyway go to citizens advice they will help with the form filling and advice of evidence and will also support you if you need to appeal. All the best with it 😀

  • No way Jojo you got turned down for pip? This agency the government are using are steeling money from those who need it most. Good luck in court x

  • Thanks so much they are a joke I have found out it was an occupational therapist who done my assessment says it all to me lol 😁

  • What? Really!! How? I'm baffled jojo .. What is this world coming to .. Why do they make things so bad for the "real " people who need it .makes my blood boil. Good luck hun ☺x

  • As already suggested go sick. If you are on the transplant list I think you could claim PIP under 'special rules'. The doctor can issue a 'DS1500' certificate if you are that ill. Then claim ESA. We didn't claim for either until my husband was clearly very unwell and in hindsight we would have qualified much earlier. Don't miss out on what you are entitled to.

    Hope you get your transplant soon. X

  • You need to make sure you are in the support group wth your sicknote. There is a good site called disability uk

  • always appeal then if you get allowed it you get from the original claim date... unless thats all change.... maybe you'll geta nice lump sum Jojo. x


  • Fingers crossed but owe it all out to family and friends as had to borrow money to survive but be a weight off 😁 but was told my husband can then claim for backdated carer's allowance if I win pip appeal so that would be a nice bonus x

  • yes its what happens to the best of us. i will cross fingers you get both. xx

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