Next Steps - Support: Hi, I hve recently... - British Liver Trust

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Next Steps - Support

Snorkers65
Snorkers65

Hi,

I hve recently been diagnosed with 'Decompensated Liver Cirrhosis' and obviously have many questions... I am a 53 year oldmaleand the condition is alcohol related - perhaps I can start with the most pressing ones..

1. Is my condition classed as a disability? I need to know to understand my approach to my employers.

2. Who do I approach to discussany benefits that I might qualify for? My money will run out soon.

3. I have currently been signed off from work until the end of August however, when I ask my Doctor about returning to work they cannot give me any idea of timeline, if ever?

4. I have had (and continue) to have episodes of HE, what is anyones experience of this, my Doctor says I should not drive and cannot be specific about when I will be able to again, if ever?

5. My job entails me travelling across Europe/Middle East and Africa, again I am told that this would not be recomended and again no idea when if ever again?

6. Does anyone have any experience of using any of their Pension Funds to support themselves?

Any feedback is gratefully received.

13 Replies
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Hidden
Hidden

There are two main issues that need to be considered here, firstly trying to understand the cause of your drinking. It may be just down to your life style, or may be an addiction that needs to be treated along with your medical condition. I'll try and answer these questions in the order that you've asked them. Please bare in mind that these are my own opinions and that others may disagree with them.

1, Is your condition a disability? The liver condition may not be convincing in it's self as a person can live to a ripe old age with cirrhosis, as long as certain life style changes are made. However, your episodes of HE may be classed as a mental disability. Most people completely recover from Hepatic Encephalopathy, however the damage in some cases can be permanent.

2. I'd go to the citizen advice in the first instance. Most claims now a days involving sickness can take time, as all this information now has to be verified. The sooner you get this ball rolling the better, it could take up to 4-weeks.

3. When the liver becomes cirrhotic, the scars will never disappear. It would be hard to know just how much damage has been done, and what the long term effects may be. Because of the scaring, the blood supply to the liver may become compromised, this may cause some of the 500 different functions that the liver carries out to become less effective.

4. HE is a terrible condition, I have suffered with it, and still have bouts, but I put this down to my old age and call them, "senior moments". The DVLA MUST be informed. It is an offence not to inform them. There have been cases in the past of people driving down the wrong slip road onto a motorway: gov.uk/guidance/drug-or-alc...

5. Travelling across Europe/Middle East and Africa. This should be a no no I'm afraid. Firstly you'll be lucky if you manage to find insurance. Even if you have a personal insurance policy this too may be effected. Africa would be dangerous. Hepatitis C is classed as epidemic in South Africa. The other thing to consider is that your now damaged liver may have an effect on your bodies immune system, you may therefore become more susceptible to infection. You'd be more prone to skin cancer too.

6 Pension fund, I'd have a look at the policy and have a word, or write to the executors of the pension trust. I wouldn't hold much hope though.

Just as a bit of further information, I have put together my own website covering Alcohol-related Liver Disease, I hope you find some of this information beneficial: taep.co.uk

I wish you luck and continued good health.

Richard

Snorkers65
Snorkers65
in reply to Hidden

Thank you, the main issues are that my job entails driving and travel across Europe, Middle East and Africa on a regular basis...?

As regards pension you will be able to access it at 55 .

Benefits will depend on weather you receive sick pay (ssp)and do you have a wife/partner you live with as this money will be taken into account.

Definitely don’t drive if you have HE it’s so dangerous but with meds and life style changes (no alcohol)there is no reason why you shouldn’t continue to lead a normal happy life.

I wish you all the best on your journey and please feel free to ask any questions as many great people on here are very knowledgeable

Huw

Thank you. I am currently receiving SSP and have no other income, I live on my own (Divorced). Also, my job requires me to drive extensively and travel across UK, Europe, Middle East and Africa...

I have enough money saved to last about 3 months only....

Hi sorry to hear this.

My hubby had compensated cirrhosis. He was signed of sick as he was hgv driver and was no longer allowed to drive.

Got the statutary sick pay from work for 6months. Then had to sign on sick.got paid. Took financial advice on his private pensions and amalgamated them. Tpge

Sorry hadnt finished got one good private pension plus his sick pay until 65 this was from age 62.

At 65 got gov pens plus private so managed ok.

Depending on you age. It is illegal to drive with he so you should get a docs certificate which should get you on esa.

Good luck

Hi, sorry to hear you are unwell.

Just to clarify, a long term condition is covered by the 2010 disability act. Which is classified as:-

Definition of disability under the Equality Act 2010. 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. The Equality Act 2010 doesn't apply to Northern Ireland.

If you google DDA, it will tell you the legal responsibilities your employers have. As a NI payer you are entitled to ESA once your SSP period is finished. Currently this has been replaced in some areas as universal credit, but the same thing should apply. You will need medical evidence.

Without knowledge of your full medical health its not possible to say if this will be a permanent situation. If you stop drinking you may return to a compensated cirrhosis diagnosis, and symptoms may improve. However once you have had HE it will take a process and time without it to get your licence back.

Given how you are now, you HAVE to inform DVLA. Im not sure if GPs have a duty to report to them. As such you will not be able to do your job for a while at least. I'd say they are likely to medically retire you?? Given a decompensated diagnosis, you would not be advised to fly. The pressure can cause problems if you have varices, therefore another part of your work which could prevent you from doing your job. As I say the DDA protects you, and employers have to try to make reasonable adjustments to your job. So for example, if they could move you to a office based roll, or let you work from home. Definitely speak to the HR Dept, but remember they are working for the company. If you have a union you can get support and advocacy from them. You are always allowed to attend meetings with a representative for your support. This could be a union steward or a relative or friend. This will be vital for you having issues with HE.

I'd try not to think too far in the future, as at this point you don't know how things will go. As long as you are no longer drinking, attending regular specialist appointments and taking any prescribed medicines as instructed, and eating a healthy balanced diet and doing some daily exercise ( even a short walk), you will be doing all you can to help yourself.

I really hope you get well supported by your employers and Drs.

Look after yourself, and very best wishes

E

Hi Snorkers,

I'll try and offer you my experience on the points you raise.

1 - Disability

Alcoholism or other such addictions are not classed as a disability under the Disability Discrimination Act (DDA). However, conditions caused by it, such as liver disease, are. Now I suspect that you are not actually an alcoholic, even though your liver disease may be alcohol related. But for the purpose of the DDA that is pretty irrelevant anyway. You have a long term chronic liver disease that requires ongoing treatment. It is therefore covered under the Disability Discrimination Act and your employer should act accordingly with this knowledge. However, that basically just means that they cannot treat you less favourably than they would if you did not have the disease. It therefore doesn't affect how long you will receive things like sick pay etc. It does though mean that they can't just sack you without looking to see whether there are any reasonable adjustments that could be made.You do though have to declare to them that you have liver disease requiring ongoing long term treatment. I don't think you have to tell them the cause, but I may be wrong on that. So in your case, as an example, instead of you driving around Europe can you do any other jobs within the company that will keep you relatively local or office based.

If I remember rightly it is still possible to be dismissed on the grounds of unacceptable performance resulting from ill-health if all reasonable adjustments have been explored and dismissed. However, your company may be happy for you to stay on their books until your condition improves or you receive a transplant even though they will no longer be paying you. If they decide they wish to dismiss you, having explored all possible reasonable adjustments then at the stage, and as an alternative, retirement on ill health grounds may be appropriate. However, decisions on whether that can apply to you will be down to your pension provider and whatever policies they have. If there is absolutely no prospect of you returning to work then retirement on ill-health grounds could be appropriate. However, in this day and age with the pressures on pension funds they may take some convincing.

See the link below to the Citizens Advice web page:

citizensadvice.org.uk/law-a...

2. Benefits advice.

I can only recommend you make an appointment with Citizens Advice. They are familiar with such questions and may even be able to act on your behalf in some instances. I would discuss all your other queries with them too as you are likely to need some professional advice on most of you issues.

3. Time to return to work

Unfortunately, this will simply be down to your condition. With H.E. and decompensated cirrhosis your ability to return to work may be somewhat restricted. However, see my comments above about reasonable adjustments and explore whether there is a role you can do, even if it means some flexibility about, how, when and where you work is needed. Given your H.E. I wouldn't be expecting you to be able to return to your original role.

4. Driving with H.E.

I'm afraid your doctor is right. Don't do it. You may be a risk to yourself and others. It may also be a condition you need to notify DVLA about.

5. Foreign Travel

Whilst you have decompensated liver disease this is definitely not recommended. You are susceptible to all sorts of very serious complications that can materialise exceptionally quickly. You are safer here so you can seek treatment as a matter of urgency if needed.

Once you are eligible for transplant, assuming that one will still be needed at that stage, then you are better staying here anyway to have the best chance of getting a donor liver. Some people only ever get one chance, you don't want to de-list to go abroad and miss out on your opportunity. That would be my advice, and was the advice given to me.

If you have a transplant, then after 6 months or so foreign travel should be perfectly ok. I went to Croatia 9 months after I had mine and had no trouble getting insurance.

6. Using Pension Funds

I have no experience of this. Include this in your discussion with CAB and also seek independent financial advice. This also could be a complicated matter, but it could be possible.

Hope that's helpful.

Kristian

Snorkers65
Snorkers65
in reply to Kristian

Thank you for your input Kristian, some useful food for thought and well received.

Regarding 'instead of you driving around Europe can you do any other jobs within the company that will keep you relatively local or office based' sadly the only UK office is some 65 miles away and the only reasonable route is by car.. also, my role as employed is an International one..

Tomorrow I have an appointment with 'Turning Point' as recomended by the medical team from my local hospital, I am hoping they might be able to provide support as they will have been through the process with other individuals in the past..

Kristian
Kristian
in reply to Snorkers65

Ok, what your current role is may need to change and this may be considered a reasonable adjustment. You don't of course have to take any adjustments, but it may be difficult to continue in your employed role. This then may bring you round to the point where the only option may be to dismiss you on ill-health grounds. Which you may or may not want. If you can't work in the office, working from home may also be an option. If you haven't had one yet I would get an occupational health assessment done. This is usually arranged by your employer. Occupational Health can also provide lots of advice to both you and your employer to try and find a resolution.

Hopefully Turning Point will give you some good advice and be able to support you. I'm sure they are far more versed in these things than I am. Whatever happens, good luck.

Hi,

I can’t comment on benefits other than I was able to cash in my whole pension at 55 because I have a terminal diagnosis. As to other benefits I will let others point you in the right direction.

My interest is with HE, a condition I suffer with. I had a brain scan and before starting they informed me that should I pass out during the test, they would be obliged to tell the DVLA and my licence would be suspended immediately. I didn’t pass out and the diagnosis was I was suffering from HE. I was prescribed Rifaxamin and Lactulose and since being on this have not had any recurrence. At no point was I told to inform the DVLA so I didn’t.

Are you still drinking, if so the advice is to stop. I am a recovering alcoholic and am approaching 16 years of sobriety. I could not do that on my own, and I chose to go to AA. It was the best decision I have ever made. Turning point will help you get started, but please remember alcohol will not only kill you, but it will also stop you getting the correct treatment. Your job is not as important as your life, and you need to prioritise your needs.

Ray

Thank you - there seems to be conflicting feedback on HE - when did you have your scan?

Snorkers.. in terms of Pensions, I trained as an Actuary. Cannot give you any advice, but basically, all the information you need will be in the scheme rules (Pensions Handbook - ask for it from the company). If you have a private pension arrangement, then you will need to seek the information from the trustees. Again, ask them for the scheme rules. Happy to take a look at them if you want. As above, in general, you can take Pension from 55 (State Pension from 65), but If you do things right, you can get early retirement before 55 (I am also 53 and commuted 30% last year). It is helping me through the period where work is not possible and hopefully will last till 65.

Good luck my friend

John.

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