So I have been of since last December. I have reacted badly to all the dmards and don't qualify because of my bloods being normal for the biologics my consultant wants to prescribe. I am having to wait until 30th June for a scan to see if it shows the obvious inflammation my bloods don't. I have been taken off all medication including the steroids that were at least keeping me moving.
One of my colleagues also has RA. She has had it for many years and is now on biologics. She wrote me an email last week which she copied in to my boss. Saying I was milking my situation and letting the team down who are short staffed. She had always worked through her RA because it's something you put up with and I could do the same if I wanted. It would take my mind off my illness and sitting "around on my bottom all day" was no good for me or my employer.
There is apparently no excuse with modern treatment for me to be off this long.
My boss who does not like me has seized on this and has sent it to the director and HR and suggested as it is my review point they look at getting rid of me.
The reason I am off is they insisted in December I see an occupational health consultant who has refused to let me back. His last letter said I was not fit to work but not entitled to early retirement as I had a treatable disease although it wasn't ironic that my employer the NHS who set this rule are also the ones withholding treatment on funding grounds. He then added it was up to my management to decide whether they sack me or not.
I feel entirely abandoned by the health professionals who were supposed to help me get fit and my employer who I have slaved my guts out for, for 10 years and to top it all a fellow RA sufferer
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Frankiefarr
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You can join many unions, any can represent you, don't let them fob you off. Your employer has to treat you as an individual, we are not all the same!!!
The disability law service are fantastic and I couldn't recommend them enough - they helped me out when I couldn't see any other way forward. I too had been off for a very long time as I was diagnosed on the back end of my recovery after my third back surgery,so my line manager (who was new and obviously took an instant dislike to me) was being an absolute git(it's the politest word I can think of for him). They advised that I got the HR director involved instead of speaking to some numpty who just ticked boxes and didn't understand the impact of their treatment towards me. It was one of the best pieces of advice I ever got given - I actually felt like I was being treated like a human again once she was involved - and my line managers actions were stopped dead in their tracks too(lots of snidey comments both to and about me). I was at my lowest as I too had failed at every drug I'd been given,and suffered every single side effect ever known - for your own sanity,please,please get them involved - at the end of the day you have nothing to lose,only everything to gain. And as for your so called colleague,it's true when they say you truly find out who your friends are in times of need!!
Good luck with everything,and give them hell too
Nicki x
I'm aghast. Please call a disability advocate in your area. Also I would phone your government elected official in your area. (called MLA in my country, I'm sure you have an equivelant).
You are being bullied and harrassed. You have rights. Please get in contact with Oc health and learn about your government laws protecting the disabled.
FrankieFarr - if the union is a national union I would suggest going straight to their regional office. However you can be supported by a union in these circumstances without them being "recognised" by your employer. Join another one. The advice and support they can provide can be helpful.
You could always also consider taking out a grievance against your outspoken and inappropriate colleague and your line manager.
If you have been off work for a long time your employer may start to assess whether they can continue your employment but they should be using OBJECTIVE and SPECIALIST evidence. This isn't necessarily unusual.
The hurdles for biologics are horrible but does lessen your symptoms or their effects.
Have you heard of a new test called Jointstat ? It is produced by Life labs here in Canada. It is available in U.K. As well. It is far more sensitive tha RF or CRP for those who are seronegative. Also SHAME on your colleague. No two people are affected in the same way . No one can judge another persons pain. The right to privacy has been violated on paper from the sound of it. We have Employment Standard and Human Right agencies here which replace need for attorney. The foundation also has list of resources in your area. They seem to be trampling all over those rights. I hope you feel strong enough to fight back. I am so sorry you have that to deal with on top of your illness. I sincerely hope they do not get away with it. Hugs and hang in there.
The IdentRA blood test is in the UK. It is the same test known in Canada as jointstat.
My hubby tested borderline positive for RA with the ana & crp tests in Jan 2015. His rheumatologist just felt uncomfortable making a positive RA diagnosis, but put him on hydroxy anyways. As time went on,his rheumy set him up for the Jointstat test. The Jointstat test came back negative. My hubby is now drugfree and it turns out that he has pseudogout.
I'm going to ask my rheumy to set me up for this test as I too went from RA+ to RA- to unspecific systemic inflamatory arthropathy.
Great idea, hope it works out for you. So sorry you both have issues. I would not be able to help hubby much in my situation and we would definitely loose our house. I had two businesses so that was a very difficult adjustment.
Wow, running one business is difficult enough, but 2?...and with RA? So sorry you found yourself in this situation.
2015 was very scary for us. I was terrified that we would of lost our house & jobs because of RA. We live in Vancouver Canada and the cost of living is absurd here. If we would have lost our home, I don't think we could of even afforded rent!! Very scary.
I see my rheumatologist in June and I am going to ask him for the Joinstat test.
I live in Maple Ridge and recently was able to restructure our debt load. I was able to combine three high interest loans into one with much lower interest. This reduced monthly interest expense by 1600.
I have been a Financial Planner for 20 years in Vancouver. The up side is I can manage without the help of social workers etc. I did find it disturbing that it is an eight week wait period. That is why when they called I declined. I was a therapist in Ontario for eight years. With that, running a business in Financial Planning and a retail store, Sophie's Pet Palace Ltd on Commercial Drive. I bought the store three years ago because I could no longer do FP. The reason I still owned it was my clients. I have been with most of them for more than 15years. They refused to deal with other advisors. I was hoping my son would take over but he is simply to young and I was to ill to continue going with him.
I received a call from my Rheumatologist re recent drug reaction and multiple infections. She ordered urine and blood work so I did not have to go back to GP. Still waiting for results. I really love her. This is not her department but she cares enough to do anything to help. She is awesome.
Small world. I used to love shopping on Commercial drive. I used to live on 18th & Knight and I loved going for long walks around the city. My hubby and I used to enjoy riding our bikes around the seawall too. Walking around Queen Elizabeth Park was also something we used to do.
We now live in Surrey and I am thrilled to walk a block....
2 months before diagnosis we had signed the paperwork to renew our mortgage. We had increased our mortgage payment and signed a 4 year term as we got a good interest rate. We figured lets pay our home off sooner...We both had good jobs then Yikes!! RA hit us both. I am thankful that my job offers a Long term disability program or I don't know what would of happened...10 years ago, my husband was a crane operator. He just assumed being stuck in that little box on the crane was the reason he had on / off knee problems. Isn't it strange how we can alway find a reason for strange pain?
You are lucky that you have a Finacial planning background. I don't know how we managed to pay our bills these last few years. We just flew by the seat of our pants. To tell you the truth, my husband never was as bad off as I was. He also decided that running a construction site was too stressful with an auto immune disease. So he took a pay cut and now is a carpenter. He enjoyed renovating Langara and now he is working on expanding SFU in Surrey.
I was raised in BChousing, so I always knew how to stretch a dollar..... I don't like stretching a dollar, but you gotta do what you gotta do.
With me loosing two businesses it nearly wiped us out, despite being insured up the wazoo. Never realized how important a label can be. This is why they call it a crisis. We have autoimmune , inflammatory disease. Arthritis is a symptom not the primary condition.
Like Autism, it has a very wide range of affectivity. Mine is very severe. CCP is 300, 3 is high. Anything over 250 ensure a far more progressive and aggressive disease. It seems it went from abscess to allergic reaction to severe UTI and now lungs are totally congested. Blood and urine tests yesterday came back. Leukocytes are 250, so blood in urine also elevated hemoglobin so red and white cells. My CRP also on the rise. Here goes round two, no more remission. I prefer to just get on with it.
Oh and Financial Planning has saved our butts in many ways but never has it been more useful than now. I will be happy to help anyone with DTC or navigating MSP. Before becoming a FP I work with dualy diagnosed children for eight years. My store also specialized in organic, raw and all natural health products. So you always learn something valuable with each new experience.
I also had genetic screening done via 23andme. I use the raw data and a program called LiveWello. It gives me nurigenomics and pharmacokinetics as well.
This means how my body responds to individual drugs and nutrition.
There is a real move towards targeted/functional medicine. So no more blanket treatment approach. They target treatment to each individual. This is particularly valuable to someone like me. Since I had my son, now 38 OMG, I am allergic to the world.
So I already know by body will not take chemo therapy either. Fortunately, I also have a great pain tolerance. My mutations mean I process opiates very quickly. So no risk of dependence but not very effective. Also allergic to Naproxen, Sulfa, Imitrex, Clhorpromazine, Lefludemide, All sando migraine and now Clinamycin. I could not tolerate Humira or Orencia. Orencia gave me Pityriasis Lynchnoids, an autoimmune condition but in my case, drug induced. This is unusual. Actemra is off the table due to Diverticulosis and hypertension. So quickly running out of options.
You really have had a rough time of it. Biologics scare me. I had MS in my early 20's that thankfully went away on it's own...but I have since learned that biologics can bring out MS. I don't ever want to go blind again...or be in a wheelchair again. To me, niether RA or MS is better to have than the other. The last thing I want is to have both.
I'm now waiting for the results of my ehealth to update my blood work that I had done today.
I too wish there were more options.
Frankie, this is awful and I'm very shocked and angry on your behalf. Have you spoken to ACAS? They can give free advice. Which union is it? Can you join another one?
How b....y dare your colleague write such a thing....& the fact that your boss has passed on her opinions is disgusting,
I would definitely get some advice from the CAB & make sure the whole department get to know what despicable people they are working with.
I know from personal experience how much better you feel if Biologics work for you......but I could never forget what a nightmare the bad times were & as for the actions that colleague took......absolutely unforgivable.
Disgusting. And from a fellow sufferer.she should be ashamed of herself. You are not by yourself and should not put up with this victimisation.the first thing i would do is get a letter from whoever put you off work and if you work for the nhs i presume you are with a union .if not do so. .i can.t tell you how much this your letter has saddened me. I. Just can.t believe how nasty someone can be .just to get brownie points from the boss. Keep smiling love you are not the one in the wrong and please takk to your union .gentle hugs .kathy.xx
How awful for you I'm so sorry. Your boss has no right to do that nor your colleague, who by the way should hang her head in shame. I hope you can get some advice on this. Take care 🌸
Hello this is really appalling. I work in law and there are a few things I would query. I'm not clear what sort of 'hearing' you refer to but a colleague's email as you describe is simply her opinion, in a legal hearing such as an employment tribunal it would not have standing as expert evidence as she is not qualified to assess your particular condition. If it is just someone else's rant about a colleague, its relevancy could be questioned as it needs to be pertinent to proving a fact that is in question.
There are various issues here that would concern me in terms of the Data Protection Act and why your boss is inviting colleagues to discuss your health which is sensitive personal data.
Under the Disability Discrimination Act it is possible to argue that RA is a disability (although it is not automatically a disability in the way cancer and other conditions are) but there are certainly grounds your company should be aware of in terms of not discriminating against you on grounds of your condition.
I strongly recommend you seek advice, either CAB, a Law Centre or from a Union, your own or join a different one. Your union should not be an arm of management, it should be separate so I don't understand that arrangement. Many solicitors will give an hour's free advice so call some local ones up and go along with everything relevant, your work contract, any documentation including letters from work, this email, anything from the medics who have assessed you. Look for a firm that deals with employment law. Be organised and use the time well and be clear what your questions are. If nothing else this will make you more confident and clear about what your rights are.
Also, DO take someone to the meeting/hearing with you as support. Minute everything or ask them to take notes. Or ask to record it.
On a personal level, is it worth thinking about what is the outcome you want from this? Would you want to return to such a work environment in any event? It sounds enormously negative and stressful. If you can determine what outcome you are hoping for, there may be a way to move towards this and feel more in control.
+1 for this as it's a far more elegant version of what I was going to say. I'd be startled if your colleague has any standing as a medical expert and to use such an email in this fashion might even be deemed as deeply inappropriate at best.
And, thought-provoking comment as to what the resolution is that you want from this. It's beyond unacceptable for this to happen and it sounds like a work environment that is unlikely to suit you after all of this (unless there are some major staff changes).
If your company is large enough to have an HR Dept. I'm surprised this doesn't contravene their own policies. Even if it's small enough that they outsource some HR, I'm still surprised this is deemed appropriate.
I'm so sorry to read is, I loathe bullying ( and ignorance). Please hold your head high, your collleague has a long way to go sadly to cause you this, did she actually ever speak to you about her thoughts, she isn't you and doesn't know how you feel or what it is that You experience even if a similar label
Maybe print off some information from a reliable source, even a few comments from here, write a letter to them and give them something to think about maybe
If you want to find new employment quite understandable but appreciate totally this side of things x
....sorry, I was so cross for you, ignore my Not so helpful ideas but hold head high yes, you deserve better as a human being x
When my tsh was on the rise I was in a very highly demanding job with high unrealistic expectations, which I'm sure was mostly the cause of this 'for me' as I didn't know how to protect myself, please take care and do whatever it is to look after yourself, health comes first, And know it's hard sometimes but try keep emotion out of it as much as pos as it's her problem, no one else's, breaking it down the boss has dealt with it so badly, his learning curve also. Take care xx
Thank you everyone for your very helpful comments. The union we have is Unison who are notorious here for siding with the management. They go drinking together and literally take the managements side in every meeting.
The discussion (which I am not invited to) will be around me hitting the 6 months off marker which allows them to make a management decision as to whether they want to keep me or not. They can deem me not capable of my duties apparently and then sack me. I've been with them 9 years. Unfortunately last year a member of my team who I can only describe as someone willing to sell his own mother for a pat on the back by his boss got his reward when he was slid in to our team manager role. He dislikes me intensely because I'm the only one who's been around long enough to remember what's he done in the past. In the time I've been off I've received one email telling me to take as much time as I like. Then a formal letter saying I was likely to be let go. I have little confidence as our next boss up who has a terrible record in sacking people who challenge him has now been made director. So there is literally no one to go to. The public sector is just as bad as the private sector when it comes to breaking the rules.
It seems unlike her I am giving in to my illness. I need to stop letting it control my life and get back to work as sitting around all day is no good for me. I asked her where her RA is. Is it in your spine, ribs, knees, elbows.....no just her hands and one foot. She doesn't seem to be able to grasp that everyone's RA is different. It isn't about pulling myself together and not letting it win. It's about being physically unable to drive myself to work etc etc
I am waiting for one of the doctors to call in response to my results yesterday. I now have leukocyte at 250 , shoulder no higher than 25. This and hemoglobin are present in urine. So that means white blood cells specific to immune system as well as red blood cells are high, so bladder infection, UTI or kidney. My GRF is fine so I expect UTI or Bladder as it is like urinating acid..loch. Also have abscess, and respiratory infection. CRP, measures inflammation, is also on the rise.I believe this means the spontaneous remission is now over. Feel awful because my daughter was going to spend the day with me and I had to cancel. She is at SFU.
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Is it time for biologics & will I get them.. update... has anyone else been fobbed off with a new diagnosis of fibromyalgia?
Struggling to work with Ra
Im an awkward one.
Could I be in remission 
RA is a threat to my career
