Hi, been diagnosed since June 2014 though had fatigue since 2010, that I can remember anyway as have cognitive problems. I am due to see a Dr on Thursday 30th July re medical retirement, this Dr being the decision maker. My GP and consultant reports basically explain the condition and how it MAY affect someone and are not really specific to me apart from that I suffer fatigue and cognitive problems ie poor memory and concentration. I currently attend Newcastle RVI on a clinical drug trial for the fatigue, having to travel hundreds of miles to get there. Most Doctors I have had contact with have little or no knowledge of PBC, one even asking me how I got it. I am really concerned about my appt and how I get this Dr to understand the absolute horrid effect the fatigue has on me. At times I spend days in bed unable to even sit up for any length of time, yet other days I can do quite a bit , for part of the day anyway. I really dont want to give up my job but have no alternative. I am a police officer and know I am not fit to sit at a desk never mind patrol my beat area. Could do with some advice if anyone has been through the ill health retirement process.thanks in advance.
Medical Retirement: Hi, been diagnosed since... - PBC Foundation
Medical Retirement
I worked for the local authority for over 20 years and was retired on the 15th July on ill health retirement due to fatigue and the inability basically to make decisions. My job was extremely stressful and there was no way I could work at a fast pace on a daily basis. It took a total f seven months to get this decision and I am so relieved. My consultant at St James in Leeds was asked for an opinion and this was all they needed. If you are attending the hospital in Newcastle for a trial I would ask them for a supporting letter. I wanted to go on that trial but I don't have something in my blood that is needed. I suffer terrible fatigue but like you, there are days when I can do just about everything. Do you live in London? When I asked about the trial they said that someone was travelling all the way from London to take part. I live in West Yorkshire and would have been happy to travel to Newcastle if it meant that I could feel better. Good luck with the appointment and maybe try and take someone with you for support. Please do ask Newcastle for some information you can pass to the doctor and good luck. I know exactly how you're feeling but try to stay focused for a wee bit longer.
Hi, I have just retired in the last month on health grounds. The company I worked for needed to chat to my GP, I also found out if you leave work on medical grounds you are entitled to 12 weeks money plus any holiday pay. You should enquire about it..
Hi Brummie, can you tell me where you found out you are entitled to 12 weeks pay if you retire on medical grounds. Ive been told im only entitled to 28days. I could do with some reference to it if you aren aware of any documents that state entitlements. Thanks
I was asked to take part in that trial but I also live in London. I knew that due to fatigue it was just too far to travel. The Royal Free are coming up new drug trials soon so they are easier to get to for people in the south
Contact the PBC Foundation direct they may be able to give you advice on how best to proceed. They may have leaflets which they can send to you with the updated name change. I have one of the old leaflets from before the name change.
good luck, I hope you are able to find a good way forward.
I took ill health retirement from nhs 6 years ago after 35 years service. The information that my GP, consultant and occupational doctor put forward was sufficient in my case. I was always worried that my fatigue would cause me to make mistakes which could have cost someone dearly and a risk my employers didn't want to take.
Good luck 😊
Hello scottiegirl.
I have been diagnosed with PBC since 2010. I am currently 51. What you have posted doesn't apply to me but one never knows, same with claiming forms of disability. I take an interest in replies as in future I don't know if I might go through the system myself. I currently have a small income but don't claim any benefits.
I have posted a llink on from a reputable site that might be helpful to yourself and also others on here. I haven't read much of it but it might be of some use.
Hi I have been through this process. The best advice I can give you is to be very careful and do not allow this doctor to put anything in the report that you don't fully understand and agree with. I was so ill when I attended my meeting. The doctor went on about how he knew all about PBC and how he felt that I MAY be capable of working up to 15 hours per week (not a chance). He put this in the report which resulted in me only being granted partial ill health retirement. I could have fought it but I was too ill at the time. It has cost me a fortune in lost pension that I should have been entitled too so make sure you don't let this happen to you. Also take any supporting evidence with you and most importantly take your Union /Association Rep. I should have followed my own advice, then I probably wouldn't have been blindsided. Oh and my job! I was a trade union official and I (naively in hindsight) expected them to behave with integrity. Good luck
Hi Scottiegirl,
I am currently going through exactly the same thing. Have been off work since November.
Was diagnosed over 3 years ago. My memory is dreadful and the fatigue overwhelming at times. I now have cirrhosis, varices and enlarged spleen.
Occupational health are awaiting reports from my GP and Consultant and then I too have to go in for a meeting with them re medical retirement.
I would say to make sure that you take someone with you if like me you have difficulty remembering what has been said.
I feel a lot less stressed since stopping work and think that this has been a good thing for me. It obviously won't stop the progression of the illness but I feel that my quality of life is a lot better. Let us know how you get on and best of luck. x
Very similar symptoms to myself. ..if I don't pace myself in the extreme I can grind down so that im in bed for 2/3weeks.when you see doc if you have any tummy troubles e.g urgent bowel movement. ...so need instant constant acess to toilet and the ability to get to one...is it up steps then they have to take these sort of thing s into account. I found that when applying for dla and sickness benefit these are tangible problems! Not that thes are the worst symptoms but generally people can't get head around fatigue. It took me a long time to put the right thing on forms. ..my standard reply to all questions now is ...it varies...due to extreme fatigue and pain I cannot do x.Y or z as all physical exertion causes cumulative problems e.g going a couple things together are not possible. As it increase nausea itching and extreme fatigue. The temptation is to say yes we can do these things but if you end in bed for a day the horrid truth is no you can't! !!! The other word to mention is pacing....that if you do x then you have to rest for 3/4hrs e.g going out for little bit. If you would need a wheelchair to go out then say so even if you don't actually go out when you feel this rough. ...but if you had to then make sure you say yes.it took me ages to realise that half the problem is that with pbc we feel so naff that we stay indoors whereas someone with a disability rather than an illness doesn't necessarily feel ill and feeling ill doesn't get tick the boxes on forms...so try to get over the physical impact and don't be too brave.use the lift take a fold up seat or wheelchair if you have to get somewhere awkward.dont just struggle then feel iller the next day ....the gp won't see you feeling terrible. Sounds awful but we have to show the physical consequences of the fatigue. Good luck .cazer
Sounds awful but some acessors do try to catch you out..
If you walk a way to appointment they may ask you this!and if you are as I am generally an honest person you will drop yourself in it!!as someone else said also mention the lack of concentration. ...struggling with previously easy mental task as a policewomen this is obviously vital and I would imagine that they can't ignor these problems. ..as I say .much luck.cazer.
Hi. I applied for, and was approved, for Social Security Disability in Nov. 2012 (age 58). After two years I was eligible for Medicare (since Nov. 2014, age 60). I also just couldn't work anymore and my employer (a school) wouldn't work with me to shorten my hours/pare down my job description. I was a mid-high school science teacher, but before my last year I got a librarian endorsement hoping to have an easier load- unfortunately they required me to spend afternoons teaching library skills to elem. students aarg!
Anyway, GO TO A SPECIALIST! I go to the Mayo Clinic in Phoenix, about 5 - 6 hours from our home in western New Mexico (USA). My primary care physician always tells me I'm above his pay grade, but he watches out for me. He referred me to Mayo in 2007 and I've been on the UNOS transplant list through them since then. They have a liver transplant program and I go there every 3 - 6 months, depending on my MELD score which is currently 16. Each pre-transplant patient has a team and they meet on us once a week. They know how to treat pbc and and are happy to share knowledge with me. One of the doctor's told me they can't treat pbc, they only treat the symptoms. I get all my pbc treatments there.
Good luck and God bless you,
Cindi
Thanks for the replies. Attended my appointment this morning and was successful, phew such a relief.
New and confused about what to do
Fatigue vs depression 
So much going on
Not feeling great
