Welfare benefits while waiting for a liver transplant?

Hi all!

I am suffering from progressive PSC (autoimmune liver disease) and I am bound to have a transplant. In February I am starting transplant assessments. I work but find it increasingly difficult due to extreme fatigue, sleeplessness and muscle waste (I am min. 10 kilos underweight). I would like to quit work and focus on core exercises and putting on weight. Will I be entitled to any welfare benefits now? I can still wash myself, make a sandwich and walk but I would rather sort out benefits now when I am clear-headed than after the transplant when I am likely to be confused and bed-and-house-bound. Do I stand a chance for any financial help? Whom do I turn to first? I appreciate your help.

[Kristian]

Hi Panicz

I also have PSC and had a liver transplant in April last year. Although the PSC was only confirmed after the transplant, I know where you are coming from with the fatigue, muscle wasting and everything else that goes with it.

I don't know your employment circumstances. However, my advice would be to try and stay in work as long as you possibly can. Not only for your own sanity but also usually you are likely to be better off financially. If you are struggling with what you can do, speak to your employer about any reasonable adjustments that can be made. In the long run, after transplant, you'll need somewhere to go back to anyway.

By all means inquire about specific benefits you may be entitled to too. Try citizens advice as a first point of contact. There are also a few others on here that have a better understanding of the benefits system than I have who may also be able to offer some really good advice. However, i don't believe making yourself voluntarily unemployed will go down all that well and there may be some delay in receiving payments if you go down that line.

I do think you are sensible putting such affairs in order as soon as you can. However, don't burn your bridges with your employer if you don't need to.

[vulnerable in reply to Kristian]

What is PSC?

[Kristian in reply to vulnerable]

PSC - Primary Schlerosing Cholangitis

britishlivertrust.org.uk/li...

[vulnerable in reply to Kristian]

Same as me diff use of language - Primary Biliary Cirrhosis. Thankyou

[AyrshireK in reply to vulnerable]

Totally different conditions but both auto-immune conditions of the liver.

Primary Schlerosing Cholangitis

britishlivertrust.org.uk/li...

Primary Biliary Cholangitis/Cirrhosis

britishlivertrust.org.uk/li...

[Hidden]

Hi,

You may find our publication 'Living with liver disease' useful to read, it details

Benefits and Entitlements in it;

britishlivertrust.org.uk/wp...

Best wishes,

BLT Admin

[Hidden in reply to Hidden]

I hope you get sorted soon xxxx

[Hidden in reply to Hidden]

Thank Lynne. I hope so too. It won't sooner than in March.

[riverdweller]

I agree, stay in work as long as you can but talk to your employer who may be able tohelp with some flexibility, it is good for your brain and your financial independence.

I have had a transplant (hepatitis C) but managed to work for most of the run up to my operation although I was very unwell by the time that I was finally admitted, so I know how exhausting it can be. I received plenty of assistance when I left hospital five months later. Social services provided me with district nursing, care and some physio. Save your resources if you can normalise your days for as long as you can, because your friends family and the state will need to support you post op. Planning is a good idea but please do your best to stay relevant and useful it will help with your recovery.