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Hi. I have been diagnosed with aps for 3 years and now in feb i have been told it has developed into sle. I have been out on hydroxy to no affect and now awaiting my next drug.
I am currently a theatre nurse and the inense physical and mental strin is taking its toll. it is my first post as a nurse since qualifying and i love my job. Since i started there i have had at least one day off a month, the most being a week off. That is untill now!!! i have been off with extreame fatigue for the past 5 weeks. My pay will soon go to no pay and i live on my own with a morg to pay. :worried:
My boss (who being in the healthcare proffession you would think would understand) has now told me that unless i come up with an option to enable me to stay at work and not be unwell, i must cut my hours or lose my job for not being able to complete my duties. They evn researched on the internet other causes for my symptoms and told me that it may be diet coke poisoning, which could be listaken for sle!!!! what!!!!!:mad: Help, Ward work would be worse as doing shifts and with my sickness no one would want to employ me anyway.
I am at a really low place at the mo. My family are trying to understand but are disapointed when i dont go to work and when i suggested taking time out they looked completely disheartened and said what a waste of my course.
Does anyone have any trouble with work.
What do i do!!! i am just not coping with anything at the mo!!!!
 

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Kelamo,

Good morning to you and nice to meet you. I am sorry your having such a tough go of it. I have APS and Lupus as well. I am curious as to what drugs you take to manage your illness? Are you on Plaquenil or a blood thinner?

I am from the US and so the laws may be different here but the ADA and LAD laws protect people with disabilities here in the US. I was forced out of work and recently won a civil law suit that I filed with the EEOC and Civil Rights because my employer failed to accommodate my disability with a reasonable accommodation.

I am sure in the UK there are similar laws to protect you as well. I also take a drug for fatigue called Provigil. I am not sure if your familiar with this drug or even have access to in over the pond but it is certainly worth asking your doctor about.

I wish I had solid advice to give you. I am confident someone here with more knowledge of the UK laws may be able to assist you better. I would suggest one very important thing to you and that is to document, document, document everything that is going on in work right now.

The best way to do this is via email but if you do not have access to that then at least journal what is happening at work and make sure you document the ridiculous statement that diet coke may have caused your SLE.

Good luck moving forward and I know you have come to a great place for support from a great bunch of people. Again, welcome to the site.:wink2::wink2::wink2:
 

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hi, Kelamo

poor you

? are you in a nurses union ie unison etc
might have a case for medical retirement , but best to seek face to face advise

http://www.adviceguide.org.uk/index/life/employment/dealing_with_grievances.htm

? ask you rheumy/lupus consultant for a confirmation of the diagnoses and a prognoses
in writing, also a referral to a WRO = welfare rights officer you should have copies of bloods test/test etc, if not ask for them keep dupilcate copies

send copies to your so called " boss " and ask if they can supply copies of any clinical evidence that diet coke etc can cause/trigger lupus etc, and min-its of all your meetings

i think they should offer you a witness of your choice to be present, when an official complaint or displinary action is being taken, keep copies/dates/times etc

the NHS runs a "looking beyond the label" employment strategy
they should also make all reasonable adjustments under the DDA guide lines

http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/YourEmploymentRights/DG_4001071
 

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Poor you!

I am going through a similar thing with my work so I know a little how you feel. If you are anything like me you feel bad enough taking time off without work making you feel guilty and useless. My first peice of advice is try and find friends who remind you of how great you are. You will need as much personal support as possible.

The next thing I did was go to the Citizens Advice Buro they were great! But as David said if you belong to a union go there. They will know what to do more specifically for the NHS. The CAB gave me advise, helped me write legally worded letters and encouraged me that I was doing the right thing.

Try and keep written evidence of everything that is done and said as well as emails and letters etc. I keep a little notebook and just jot sentences that are timed and dated.

Lupus is covered under the DDA and so employers must make reasonable adjustments. The law will be on your side. It was created for people like us.

This is a horrid thing to go through and it is the last thing any of us need but unfortunately it is not uncommon. The good side of that is the fact that their is a lot of advice out there to help you out.

Has your boss sent you to occupational health?

If the stress is causing you problems go on sick leave. They cannot dismiss you for beiong ill. It is against the law! They will have a period of time that they will have to pay you full pay (Often 6 months to a year)

I hope things get sorted out quickly.
K
 

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Hi

I am a dietitian and have had similar problems. In the latest episode my boss referred me to occupational health and I saw a really nice Dr there who was completely on my side. She understood the problems and wrote back to my boss to remind her of her obligations under the disability discrimination act. She reminded her that she is obliged to make reasonable adjustments to my job to enable me to continue to work and pointed out that my condition is a chronic condition which will flare from time to time and that this may necessitate some time off work. Since then my boss has worked with me to make some suitable adjustments and she has been most helpful over the past couple of weeks when I have had to take some time off due to illness. I would get referred to occupational health if you haven't already as well as contacting your union. Your work should have better understanding than they have and shouldn't be allowed to hastle you so much.
 

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It is a LAW that employers provide reasonable accommodation to the disabled employee as long as it does not cause a un-due hardship on the employer.

Typically, if a company has more then 15 employees then they MUST try to provide that accommodation to you or place you in another area where you can do the job and obtain the accommodation all at the same time.
 

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Hello, sorry but from my experience I do not have much good news for you:(

My post may be a bit depressing for you as I worked for the NHS and actually did have to give up work because my SLE made it impossible to keep working.

In the end what happened to me did become the most suitable option and in the long term it has helped me become more stable with my SLE symptoms and in overall better health. (I can now rest when needed, pace my activities, and avoid work stress etc)
However, it made me very ill as I went through the process. I almost got to the stage that my house would be repossessed unless I got some money soon. My experience included getting "Dismissed due to ill-health". I had to go through a lengthy appeal before I was finally granted "ill-health retirement" pension money. I now have to survive on a much reduced income, and I have had to accept that because I have Lupus I'm incapable of working (probably for rest of my life/until a cure for SLE fatigue is found).

The whole process will be stressful and can actually make SLE flare up through the stress. You will also have to take a really good honest look at the assessment of how ill you really are and what you realistically can expect to be able to do work-wise. This includes your current job but also includes the "foreseeable future" prospects of if you are capable of doing any type of work/will ever be able to.

I would advise getting all the help and advise you can including info from the CAB, from social security, from a union rep, re all the options/financial implications of these options.
Also try to get the advise and honest opinion from your GP & consultant re how much they would support you trying to stay in work/ how much they agree that your health makes it impossible for you to work, as you will need letters of support for your case regardless of which route you end up on.

It will also depend on your personal circumstances - eg if you are very young & only have a few years service in the NHS any "ill-health retirement" is probably going to be very difficult to get & not worth much money (but even so it may be better than getting "dismissed due to ill-health"!).

Also have at least one other person with you to record/take notes at any meeting you have in future as comments such as the "diet coke" one are not acceptable

My experience may give you an idea of what you might expect, sorry it's not more upbeat:(
The hospital I worked at had a sickness policy they had to follow so after a certain number of days off everything got triggered, and things got more & more serious as time went on and the amount of sick leave I had increased.

Initially it started with health reviews with my manager, then occupational health involvement, letters from my GP etc.
This then progressed to attempts to accommodate me under the terms of the DDA - (I tried all sorts eg cut my hours, gave up some of my role for less stressful/demanding tasks, had a couple of attempts to take a big break from work (2months) to try and improve/give new medication chance to work etc before returning to work, and I tried gradual rehabilitation when returning after long absences).

Finally my sick pay (SSP) was coming to the end, the sickness policy procedures were reaching the final disciplinary stages stages, my health/sickness absence was still very poor, and it was becoming obvious that my SLE treatment was not significantly improving my health, ( by that time I'd been ill for over a year and off work permanently for the last 4 months) so my union, my manager, GP, & self all agreed to try for "ill-health retirement".

However even though going down the "ill-health route was deemed correct by everyone, initially my application was declined (they accepted my disability prevented me from doing my job but were not satisfied that I would not improve /be incapable of working for the rest of my working life)
At the same time I got this news SSP totally ended so my only money was from the social security (they don't fully pay your mortgage) and to top it all I got "dismissed on the grounds of ill-health" from my NHS job ( yes they can do all that & still be in legal rights under DDA)


As my SSP ran out Social Security benefits (what used to be Incapacity benefit) via the job centre a kicked in - these benefits (now called ESA) depend upon having enough national insurance contributions and also on your health & ability to work. (It would take too long to go into here but if you end up on ESA instead of your current wage you will have to prove that you are not well enough to work etc and it's not a large amount of money/does not fully pay towards mortgage costs)

Also I think you have to have worked for a certain number of years before you are entitled to ill-health retirement ( & the retirement pension money) & how much pension money you would get if successful would depend on your average wages & how many years service you have had.

Beware of my experience I loved my job & was worried about losing my wage, home etc so really struggled to keep in work -I kept trying to get my GP to sign me back on as fit to work/ say I may improve as the Plaquenil got time to work, and generally tried to get my Dr's to support me staying in work/say how I was capable of working. However in the end this went against me in the pension makers initial decision and in order to appeal the decision I had to then get all my Dr's to say how bad I was and incapable of doing any kind of work !
Not sure if there is any way out of this "catch 22" situation as at first everyone is trying to say you may be well enough to work if given sufficient support.
Personnel dept, occ health, managers etc must try to make adjustments that allow you to work despite having a disability (if they don't then you have a case under the DDA). In trying to accommodate you under the DDA they have to look at all options re your health & your job and they will do this before they can recommend that you apply for ill-health retirement.

However if you end up on the "ill-health retirement route" then you have to prove that you are not fit to work, including working in any job/ your ability to work for rest of your life as the pension decision makers can say (as they did to me at first) - we accept that you have SLE & can't work but we don't have enough evidence of how permanent this will be/that it will prevent you from doing any type of work or ever working for as long as the pension money would be paid if granted (ie until I'm 60)
 

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kelamo;525752 said:
Hi. I have been diagnosed with aps for 3 years and now in feb i have been told it has developed into sle. I have been out on hydroxy to no affect and now awaiting my next drug.
I am currently a theatre nurse and the inense physical and mental strin is taking its toll. it is my first post as a nurse since qualifying and i love my job. Since i started there i have had at least one day off a month, the most being a week off. That is untill now!!! i have been off with extreame fatigue for the past 5 weeks. My pay will soon go to no pay and i live on my own with a morg to pay. :worried:
My boss (who being in the healthcare proffession you would think would understand) has now told me that unless i come up with an option to enable me to stay at work and not be unwell, i must cut my hours or lose my job for not being able to complete my duties. They evn researched on the internet other causes for my symptoms and told me that it may be diet coke poisoning, which could be listaken for sle!!!! what!!!!!:mad: Help, Ward work would be worse as doing shifts and with my sickness no one would want to employ me anyway.
I am at a really low place at the mo. My family are trying to understand but are disapointed when i dont go to work and when i suggested taking time out they looked completely disheartened and said what a waste of my course.
Does anyone have any trouble with work.
What do i do!!! i am just not coping with anything at the mo!!!!
:blush: At the time things started going wrong for me, I was working as an officer at sea, one day endeavouring to become captain.
It took a few years for me to realise I could not carry on with this physically demanding job as SLE and effects of Fibromyalgia took effect.
It is extremelly devastating to loose your career and ambitions.
It took a while of searching and I managed to find a job in the maritime industry where the hours worked for me.
It did take alot of convincing to management that I was up for it.
I still work shift work, however it is a time on time off contract of 3 days on 3 days off and it suits me just fine.

There is hope, and if you are determined enough, you will be able to achieve almost anything, although fatigue and pain may slow you down at times.
Try approaching your managers and ask if they can suggest something in your chosen field possibly as part time, or come to an agreement and find a shift sequence that will best suit you and how your condition affects you as an individual.Looking at maybe more of a training role, or administration role.

I know how devastating this can be, I know because almost 8 years after leaving the sea, I dwell on the past. But I look at what I have battled in the past to get to where I am now.

Keep positive, and try not to let comments from others get to you. Everyones SLE is different and every one has different coping mechanisms, and we all know how hard this can be.

Please approach your managers and let them know how much this means to you, and hopefully you can come to an agreement of some sort.

Good luck.
 
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