Cirrhosis and disability. : My doctor... - British Liver Trust

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Cirrhosis and disability.

acjb007 profile image
22 Replies

My doctor mentioned today about my CT scan and it confirmed chronic cirrhosis, several varracies and hyper portal hypertension. He said this condition can be classed as a disability and gave me some websites to look at.

Does anyone here claim disability benefits or class themselves disabled?

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acjb007
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22 Replies
carmik profile image
carmik

Hi

Sorry to hear your news. Do you know why you have this condition?. Are you seeing a hepatologist and which hospital are you attending?.

My husband was in the same position as you are. He was signed off sick from work and was able to claim Incapacity Benefit which later became ESA and did not have to attend interviews or try to find a job, as he was put in the support group.

This means you are classed as being unable to work and therefore do not have to attend for any interviews either at the Jobseeker Office or for jobs.

He later developed Hepatic Encephalopathy due to these other issues, and was able to claim disability living allowance which is now known as PIP.

Depending on your age, if you have a private pension and you retire due to illness you may be able to take your pension early as well. But before you do this you must get proper financial advice. Taking your pension does not stop your ESA allowance but it will be reduced on a pro rata basis

Our financial advisor didn't charge us but just kept whatever the company paid him for the business he gave them.

Any questions feel free.. Also if you go down this route it is worth signing up to

the " Benefits and Work" site at a cost of around £20 per year. You get real help there for making claims.

Best Wishes and Good Luck

Jmears profile image
Jmears

I claim motor biliary but not disability, but yes you are classed as disabled.

H1ghtower profile image
H1ghtower

How do you find out what the benefits you,re receiving are actually for?

AyrshireK profile image
AyrshireK

With the way the new benefits assessments work it is not the actual diagnosis that matters but the way which your illness/condition affects you. Some people with a cirrhosis diagnosis can function fine and carry on working whereas others are floored by the fatigue or general ill health of it all.

My hubby has cirrhosis with portal hypertension and (now treated) varices, he suffers from chronic fatigue and is now showing some albeit mild signs of HE. He couldn't cope day to day with such tasks as cooking for himself, managing his condition, managing finances etc. etc.

We were able to claim Employment and Support Allowance (ESA) - was put in the Support category due to ongoing medical treatment without a face to face assessment & this has just been renewed without any forms ever since.

Also claimed PIP (Personal Independence Payment) - had to battle all the way to tribunal at the first claim and got the enhanced daily living component but no mobility. He's recently had his claim renewed (waiting for final paper decision) and had a better face-to-face assessment this time round - we've had a phonecall to say his enhanced daily living is continuing and also now going to receive some mobility.

The site "Benefits & Work" which carmik recommends is excellent in helping you fill the forms in with enough information to score the needed points - for around £20 subscription it is well worth it.

So yes depending on the affect the condition has on the patient benefits can be claimed but be warned it is a bit of a minefield and you do need to get supporting evidence from your medics since the DWP/ATOS/CAPITA will not do this and therefore it is up to you to prove your case. It can be a bit of a battle but does make life easier financially in the long run.

Best of luck with it.

Katie :)

Purplepaul profile image
Purplepaul in reply toAyrshireK

ATOS are psid by the government to fail everybody so that only genuine claims go to tribunal. Its a fixed dystem to deliberately hinder sick people from claiming whats rightly theres. You can refuse to be seen by atos but dont refuse the medical. Atos didnt submit any of the evidence I provided them to the tribunal luckily I took the copies and my witness to the court and got my claim accepted in 5 minutes.

susieanna profile image
susieanna

Hi,

i would personally class it as a disability, but unless it is really, really debilitating don't expect any empathy from the Atos people/government medical people; they really do not care about people at all. Its definitely worth trying however; go for ESA and PIP, but don't hold your breath. Get as much info as you can from your specialist re the full extent of your condition etc as evidence. Good luck.

Bugsy1962 profile image
Bugsy1962 in reply tosusieanna

If you have full backing from consultants and specialists .they dont really have a leg to to stand on .you can ask for atos qualifications .as most have not completed a first aid course.

Hello xx yes - we claimed DLA and ESA - struggled for it tho - which was quite amusing as Hubby lost his business and income due to his illness and then I gave up my job as a Reg Nurse to look after him - got a massive £60 a week instead of my usual £500 😫😫😫 but it would have cost the same to have carers in 24/7 (due to HE) - if you are thinking of applying then be ruthless !!!! It takes quite a while and remember when completing forms etc use 'worst case' - with decomp cirrhosis every day is completely different so use your worst day as example - I put things like 'variable' and had to re-do all the forms as it made it sound like 'most days he was ok' but reality was one week 4 good days 3 bad and the next week 6 bad and 1 good xxx also claim for mobility as if suffering with HE - confusion and lack of awareness play a big part and you can designate a 'person' as your driver etc (for appointments) - I worked out that I had spent about £800 on taxis to and from hospital because I don't drive 😫😫 xxxx if you need any help with form filling - I can assist 😘😘😘😘😘

Hi there

All the advice on the forum about this is correct. It is also worth while contacting your council's social services they y may be able to help with home repair grants, and such things as wheel chair access to your home. As for fillings in forms etc try your local Citizens Advice Bureau (if there is one in your area) the CAB have benifts advisors. Mind you they are usually busy, like anything else to help the people cuts in funding have massively reduced such services to a skeleton of what they used to be and need to be.

Good luck

Bolly profile image
Bolly

As others have said acjb its not the cirrhosis that is the disability, its how it limits what you can do. I have cirrhosis and was very unwell for a while with liver cancer, but it never stopped me working, I still work now. However it affects others to a greater extent and may mean you cant work. I think one of the criteria for being 'disabled' is whether you can do most things yourself or if you need a carer? Also how far you can walk unaided. So if for example you can still drive, and walk and shop and cook and wash yourself, it may be that you are not 'disabled' enough for PIP. Ayreshire has been through the process twice on behalf of her husband and is a mine of information!

blackbeef profile image
blackbeef

Before going through a very lengthy process, if you have savings of £16,000 or over you do not qualify for ESA so don't even bother asking for a claim form. Income, including your spouse will also severely affect the amount awarded.

carmik profile image
carmik in reply toblackbeef

Hi Blackbeef

There are two levels of ESA. One if you have paid enough contributions

(contributary) and the second if you have not paid enough contributions (income related.) It also works on any other benefits that you or your partner may be on.

So it is right to fill in the claim form as until that has been done you will not know where you stand.

My husband was signed of sick pre and post transplant for 9 years ,had paid enough stamps to get contributary, even though he has a private pension as well.

So people need not be put off in thinking they shouldn,t claim.

What fits for one doesn't fit for all.

At the very least apply for the blue badge parking permit. In my case (having HE) I didn't wait for the pips but as I couldn't understand the forms, the local social services did it all for me and I just had to pay the £10 charge. I'm not holding my breath for any other benefits.

acjb007 profile image
acjb007

I read you can only be classed as disabled with liver disease if you have suffered or suffering from certain afflictions. At the moment my liver is being monitored by a specialist. I have suffered HE, fluid build up in my tummy, ruptured varices, severe blood loss, problems with my spleen, kidneys and gallbladder. In hospital I had pneumonia, blood transfusions loss of use of my legs. Now I still have hyper portaltension, varracies, problems with my legs. I'm classed as having chronic liver disease with severe cirrhosis. Would I be accepted as having a disability? This isn't to claim benefits it's to let work know how serious my condition is. Many thanks.

AyrshireK profile image
AyrshireK in reply toacjb007

The definition of a disability for purposes of equality at work can be found at gov.uk/definition-of-disabi....

In short "you’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities."

What ‘substantial’ and ‘long-term’ mean

‘substantial’ is more than minor or trivial - eg it takes much longer than it usually would to complete a daily task like getting dressed

‘long-term’ means 12 months or more - eg a breathing condition that develops as a result of a lung infection

There are special rules about recurring or fluctuating conditions, for example, arthritis.

Progressive conditions

A progressive condition is a condition that gets worse over time. People with progressive conditions can be classed as disabled.

However, you automatically meet the disability definition under the Equality Act 2010 from the day you’re diagnosed with HIV infection, cancer or multiple sclerosis.

The full web page is worth a read.

Katie :)

papad profile image
papad in reply toacjb007

I suffered from same exact problems I'm now on disability

acjb007 profile image
acjb007

Thanks for the reply. This will Prob sound thick but now I know I'm clearly classed with a disability do I have to register it? For instance because my condition I was often late for work due to severe tiredness. My boss said I was lazy. I explained since my hospital visit I find it very hard to get up in the morning and the pain and stiffness in my legs slows me down. She said it's rubbish and I need to be in on time. Is that discrimination?

Bolly profile image
Bolly in reply toacjb007

As you are working acjb I'm not sure you can claim PIP? Is that right Katie? Sounds like you dont have a sympathetic boss! I have cirrhosis, HBV and AIH. I get up at 5.30 am to start work as I know it takes me a long time.

AyrshireK profile image
AyrshireK in reply toBolly

Actually you can claim PIP whilst working or out of work as it is a benefit which is meant to cover the additional costs that having a disability brings.

Unlike ESA it is not means tested and doesn't take into account any other savings, partners hours or household income.

The forms are a nightmare but the site 'Benefits & Work' which has been mentioned has a step by step guide to filling it in.

A chat with a council Welfare Rights Officer is advisable - they will look at all the situation, income and outgoings and can help with form filling, advising on what benefits one might be eligible for and also help represent you with appeals. Ours was brilliant during our first PIP appeal - hopefully after a phonecall I had the other week from DWP decision maker we are just waiting to hear good news on PIP claim renewal.

Katie :)

AyrshireK profile image
AyrshireK in reply toAyrshireK

acjb007, a chat with an ACAS adviser might be appropriate to see where you lie and what 'adjustments' your boss should reasonably have to make in order for you to continue in employment with your condition.

If your workplace has a Occupational Health Department perhaps you should 'touch base' with them in order to get your health condition recorded on their books and then under equality act you should have some rights to have reasonable adjustments made.

My hubby was looking for work (he'd only recently moved to Scotland to live with me) at the time of his diagnosis and GP immediately signed him off as unfit for work and he got ESA without difficulty after I filled in forms with enough evidence to prove his condition.

Katie xx

Bolly profile image
Bolly in reply toAyrshireK

Great, I thought you would know Katie!

dckimberly profile image
dckimberly

I did, in the US, but I dipd not have a choice. I was so ill, I could no longer work or attend college. And I had a 17 yr old daughter still at home. It was hard, the pride issue, but, I paid taxes for over 25 years,, so I did it. The medical coverage was brilliant! If your doctor told you, he'll know how to fill out the forms you need done. Hope that helps, as I'm not sure where your at. I live in the UK now and do not recieve SS D. But my partner, thankfully, makes a good living, so me working is not needed.

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