Hi everyone, although i read this site all the time this is only the second time i have ever left a comment, so here goes. After 3 years of constant ear, eye and throat problems, my ENT cons, and Rhumy decided last September it would be better to remove my adonoids a huge lump that was growing in my throat by my voice box and have a throat cancer biopsy, and have my ears, eyes nose and throat flushed out to eradicate the infection that was causing my continuous lupus flare up. So i had to have 2 weeks off work for the operation and recovery, i could of had far more time off due to being not fit for work after 2 weeks really but i went back into work, i am a customer service advisor and this was the first time i had any sickness time off in 4 years. On returning to work my HR and Line Manager in my 1 to 1 back to work meeting, although sympathized with my condition, gave me a warning for having too much sickness time off. 10 days in 4 years and part of the time off was for a throat cancer biopsy. Luckily when i was eventually diagnosed with Lupus, Fibro, connective tissue disorder and severe spine, and neck arthritus, curviture of the spine, and spasmatic bowl disorder (that one i have lived with for 20 years plus), i joined the works Union, best thing i ever did, as i got in touch with them and i appealled the decision, it has taken my works HR since last September to sort themselves out, and have kept me waiting until last week, when 2 of the HR team members tried to get my appeal meeting to go a head without my Unison Rep, which was very naughty of them, i stood my ground and would not go ahead with the meeting without my rep, so the meeting at my works head office got stopped much to the 2 HR annoyance, as they both told me that no unison reps could make it that day. but my meeting with them had to go ahead right there and then when really the Unison rep had already cancelled my meeting until the following day. The whole episode was absolutely awful, i nearly bottled and gave in to the meeting just to get it over with, as i was ill all over Xmas in bed with no energy, sickness, joint pain etc, then i hadnt slept at all for 2 days prior to the above meeting, but when the 2 H R reps were trying to push my sickness meeting through with my rep i suddenly stood my ground and thought if i do not get this sorted correctly today, i am leaving myself open for them to get rid of me if i am off ill due to no fault of my own and due to all of the above. So glad i did stand my ground, as i had my meeting with the 2 the day after with a top Union rep who put them in their place, and my warning from them was cancelled. So one up for the Lupus sufferes, the little people can win sometimes. Also my Union rep is so outraged by the HR lack of care towards me he is helping me to compose a letter of grievance towards my company basically in a bid to kick them up the back side and to care more about employees who are in ill health due to no fault of there own, as even though i consented for my works to have full knowledge of my illness history from my doctors, i was still accused in the first meeting of maybe making my illness up to the extent that i was ill, so in last weeks meeting i took all my medicines in a bag and tipped them all over the table just so they understood that i was not making my illness up and to show the extent of the amount of medicines a lupus sufferer has to take just to survive the day. It worked though.
Problems with work: Hi everyone, although i read... - LUPUS UK
Problems with work
Well done you! Sometimes we give in when were feeling most vulnerable and the bully's of this world play on it everyone needs someone in their corner to help fight, no matter which organisation it is. I've had this with nhs making you feel your wasting their time.
Glad you stood your ground and got the right result 
Gosh, I really sympathise with you. You've had a tough time physically and it sounds like you have been treated really badly. I'm glad you've got the support of the Union. I am also appealing against my employers but unfortunately left it too late to join the Union so am on my own although I am allowed to take someone to the appeal (Monday), it has to be someone within the organisation. Like you, I often feel like giving up just to get it over with but there is a principle involved as well as my job and income. Unfortunately once again ignorance of the condition is clearly evident. In my case it was my depression that brought it to a head and even though my employers advertise their understanding of this, I have still been treated like it is a stigma and have experienced prejudice in the workplace. Anyway, best of luck and well done for persevering (and I liked the tipping of the meds on the table!) x
Have you tried ACAS Jacqueline work for government independently for workers rights you can Google number good luck x
Many thanks, I'll give it a go! x
Well done puddleduck it's amazing where someone's inner strength comes from and yours came with such a force .may the force be with all the little people x
Well done to you and congratulations for winning. It truely is disgusting that we once again have to prove we are ill. I don't work anymore it's just the government I have to fight they have taken the place of an employee in not beleiving you are genuine. I worked for B AND Q for 10 years had a good job in the office giving them overtime with out them asking me simply because if I do a job I take it serious. But from time to time and truely not often I had to have time off usually with a serious infection or being in hospital. I was threatened and made to feel guilty and refused to be allowed to see a company. Most of the young ones woud have a day here or a day there but no one ever said anything to them. In the end I couldn't cope with the fear of becoming ill when I felt they weren't helping, I changed jobs to work for the NHS with less hours. I only lasted 4 months when I became so ill I was in hospital for weeks and eventually had to give up work.
I regrete not taking it further but often you haven't got the strengh so you give in.
So glad you did and if it was today I woud fight knowing so much more about my rights. Sending you good wishes. Xx
Hello, It is likely that you are classed as disabled for employment law purposes if your lupus has a substantial adverse effect upon your abilities to carry out normal day to day activities. Substantial only means that your symptoms are more than trivial. It is essential that your employer recognises your condition and may be required to make reasonable adjustments to accommodate & support you. You shouldn't feel that you are in a battle with your employer. They are meant to assist you. I would recommend you check your bank, car & house insurances to see if you have legal advice. I am with barclays and it is part of my current account. Get some professional advice, with a view to getting your employer to understand their legal obligations towards you and so they fulfil them. Reasonable adjustments can include all manner of things such as a later working start time, even additional rest breaks when you are feeling unwell. It is common for lupus sufferers to have depression. That in itself is classed as a disability. Xx
Thank you for all your kind support, it really has been a tough time as my job is the only income in the household as my partner is very ill with a brain hernia, called Arnold Chiari Malformation and we are just waiting for a date for his operation with the Neuro Specialist at Preston Royal which is going to be a horrible operation as the op involves part of my partners skull being removed and the surgeon operation on his brain and spinal chord, if he doesnt have this operation and soon then he will loose his movement in his arms and legs, so no choice really, and due to all this pressure on him as he has been ill for 3 years and the local hospital mis-diagnosed him with parkinsons even though he had a brain scan at the beginning 3 years ago, but we felt that diagnoses was not right, we found out last August it wasnt, all the stress has caused my partner to have a break down so he is being treated for that as well. My HR bosses and Line Manager all knew about my situation when they gave me the warning for been off, so im sure all of you out there can imagine the stress i have been under with worrying about my job. I suppose that is why i decided to fight as i had enough and in my case because my bosses have absolutely no idea how ill all my conditions make people, their ignorance isnt a reason to give me a warniing, one of the HR bosses in my back to work meeting said "So you feel like you have the flu and you get pains in your joints sometimes" is that Lupus, and that was after i had sat there in my appeals meeting for 15 minutes explaining what Lupus etc is all about, I had even printed the information out about Lupus and she still didnt get it. I really think it is the Management in the work force that need educating about Lupus and all the other conditions that comes with it, as even though me employers knew that Lupus was covered by the Disability Discrimination Act they choose to ignore it, and they have informed me since that i will not be covered if i am off another time, a statement that my union rep has gone mad about and i am so lucky to have him as he is really fighting my corner on this, he also read up before my meeting all about Lupus so he could understand the condition more, something that my bosses didnt bother to do. Thank you for all of your support, and i will let you know how my situation goes. xxx
I can empathise with your situation to some degree as I was effectively forced out of my last job by my employer as they were so unsympathetic and quite honestly down right cruel. I was so poorly that in the end I had to have a sick note and go onto ESA which for them was, I think, a relief, but for me it was devastating.
I am so pleased that you have fought your corner and your employers are having to stand up and take notice 
x
Good for you for having the strength x
It is absolutely shocking what some people are having to put up with!! Good for you Puddleduck to stand your ground! Sadly, I think many lupies couldn't manage this, as often 'on their own' - not realising that being a member of a union may be the 'make or brake' in this kind of situation. An article about this in News&Views would be useful to LUPUS UK members. Hope all goes well with your partner's op. Thinking of you both.
I'm currently working on two booklets 'A guide to work' and 'An employers guide to lupus' (working titles). They're coming along very well and will hopefully be available in the next few months. They will provide a lot of advice for people with lupus about their rights at work and the services available to help them. I'll post a blog on how to get hold one them once they are printed.
That's fabulous news Paul - well done! Looking forward to 'spill the beans' about that information ..once printed.
Hi, I really feel for you. I myself had problems with work. At the end of October my dad was diagnosed with lung cancer, the shock trigger a flare and I ended up on crutches. Having been one of the hardest workers in my workplace I was appalled when on handing my boss my sick paper she threatened me with occupational health. I had never lied about my illness and had always kept them up-to-date with any changes. At present I am studying for a degree and was therefore aware of the legislation in the Equality Act 2010. knowing my rights and after discussing the issues with my union rep, I refered myself to occupational health and hayho they have been wonderful. My doctor diagnosed deppression and wrote a detailed report listing the other medical complants I have because of lupus. Occupational health wiped the floor with my boss and refused point blank to sign me fit for work. I'm on the road to recovery and will be returning shortly on a phased return, I am also seeing the occupational health physician, who will then recommend a work plan for me. For the first time I feel supported and now realise that there is help out there if you know where to ask and if you stand up to the bullies. Good luck and I hope everything goes well for you in the future!
Well done for having the strength to fight this. It is so unfair that you have to go throught it. I really do wish you all the best xx
Sick watch? 
Has anyone had problems with the hydroxochloroquine and severe side effects and find steroids instead work better on their lupus symptoms. 
Dismissal from work for being very ill...? 
Back to work
