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Rank: Newbie
Groups: Registered
Joined: 2/15/2010
Posts: 3
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Hi everyone, I'm Linda and I was diagnosed with RA over 2 years ago. Since then I've been on two DMARDs, including MTX permanently now, and have just failed on Humira so am looking at Rituximab next. I've also got fibromyalgia, and fatigue is probably my biggest problem after the flare ups/pain. I have a wheelchair for long trips and getting around outside and get the DLA mobility component.
I've managed to keep working full time since my diagnosis, which I need to do as I'm the main breadwinner. Unfortunately I've had two serious flares and a couple of infections in the last year or so, leading to 8 weeks off work in total. My employers have been quite supportive generally and have agreed, although grudgingly, to let me work from home one day a week as a trial. This has been going on for the last 3 months or so, but my boss is getting irritated by it as he doesn't like people working from home at all and is now trying to force the pace with HR by moving me on to a "capability review". Unluckily the HR lady doesn't think they have a formal procedure for this!! The HR manager will need to get involved, and it may well end up with me losing my job or being forced to go part time, which I can't afford.
My main issue is that asking for working from home one day a week is surely not unreasonable? I would like to do 2 days a week from home, but they won't entertain that. My boss has made it clear they expect me to come in during September for completion of a project I've been working on, and last week I did the full 5 days but the trouble is, I was so tired after that I've spent most of last weekend asleep or doing nothing (as usual) and now have had to insist on working today from home which hasn't gone down well.
I'm also getting married in six weeks(!) and this decision of his could not have come at a worse time, what with the Humira failing and having to wait for all the funding process to go through for the next steps. The extra consideerable stress I can well do without and now I'm worried I'll flare again, just in time for the wedding.
Does anyone have any advice for me? I thought under the DDA that my employer has to make reasonable adjustments to allow me to work - and the daft thing is that other people work from home with a direct link into the office (I have to make do with a flash drive and load/reload everything each time). It's just my department head who won't allow it.
I've felt so much better reading these forums and hearing all the great advice, so am really happy to have found my way here. Big hugs to everyone here. LINDA
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Rank: Newbie
Groups: Registered
Joined: 8/1/2010
Posts: 9
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hi Linda
Under the DDA your employer must make reasonable adjustments for you .If others work from home they have even more reason to allow you to .
Give them a Copy of the NRAS info for employers . the bottom line is that by law they must do it .Talk to your disability employment advisor at your local job centre .
They also have to liaten to you ,it will be cost effective for them give you the adjustments you need you would then be less likely to have flare ups .
keep trying look up on disabilty .gov.uk you will find some written stuff to down load to give your employer about reasonable adjustments.Good luck
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Linda
Hello and welcome to the forum but sorry you have RA. I am sorry that you have failed on the Humira. I have failed on Enbrel and now Humira and am waiting to see my Consultant again in a couple of weeks. I thinks it is just trial and error on finding the right medication for each individual person.
It is very worrying when you have RA and are the only bread winner. I am also in the same situation as you. Luckily my company have been more supportive. They allow me to work from home two out of the five days I work. I work at home on a Tuesday and Thursday so I am always in the office every other day. They have supplied a computer and link to my desktop pc, mobile phone, chair and anything else I asked for.
I was only diagnosed 18 months ago so am still very new to this and not completely sure what our rights are. The best suggestion I can give you is contact NRAS immediately. I believe they are wonderful at giving the advice you need and will put you in touch with people who can tell you what you should be entitled to and tell you how your company should be dealing with this situation. As far as I know your company cannot ride rough shod over you as they are doing as you have a chronic incurable disease and they have to make reasonable adjustments. The other thing I did was give out copies of the NRAS booklets about RA. There is one to give to your employer. I gave one to my immediate boss, my HR department and even the MD had a look at it.
I think it is the same old story when you tell someone you have arthritis, they have no idea what RA actually involves. Unfortunately all the stress you are having is not going to do you any good and with your wedding around the corner it is the last thing you need. For me the biggest factor is dealing with the fatigue and even working from home two days a week I find that I can do very little at the weekend. I am blowed if I am going to give up my job though and want to keep on battling as long as I can.
Please, please don't let them win and get some professional advice. Companies do have a habit of forgetting all the time and effort we have put into our jobs.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Linda
It is good that you have found the forum, and a big welcome.
I am sorry to hear you are going through so much at the moment, and from what I have gathered from other posts NRAS will certainly put you in the right direction.
Lots of best wishes for your forthcoming wedding. I m sure with all the help that is available to you, matters will get sorted very soon.
Please let us know how you are getting on.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 89
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Hi Linda, i've been having work related problems too!
Giving NRAS a ring and telling them my problem was the best advice ever. They sent me some information to advise me on my work situation, and even a copy to take into work for my area manager.
Also some other useful addresses and phone numbers.
I'm still in the process of dealing with all this, but i'm more confident now and hope for a result very soon.
Go on give them a ring you won't be sorry. Good luck, Kathleen. x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Linda,
Welcome to the Forum although sorry you have RA. Poor you with all the stress and leading up
to your wedding.
As per the other posts give the NRAS a call they are really helpful and may have good
advice for you. The Employers guide very good and lots of questions answered. It does
seem strange though that 'others' can work from home. I think your immediate boss is
not behaving properly.
I have been off work since March and hope to get back next month. I work for a large
Insurance Co. and they have been good so far. They are coming to see me next week
with a view of a graded return. I am worried as I am also like you the main wage earner
so I wonder how this will work out. I am a Manager and they don't allow a Manager to
go part time = so watch this space.
Let us know how you get on - keep posting
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 357
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Hi Linda, Sorry to hear about your work issues. As a few folks have said already, the two NRAS work booklets are very good. I'm not sure where you might be in the UK but if you're close to Reading or London you could consider attending one of NRAS's Workwise Workshops, I went to the one in Birmingham earlier in the year and it was excellent. More info on them here http://www.nras.org.uk/h...eworkshops/default.aspx
A call to the helpline can be hugely beneficial too. I hope you manage to get some help on this Jo. 2012 Fundraising for the National Rheumatoid Arthritis Society (NRAS) http://uk.virginmoneygiving.com/RoboJo
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Dear Linda
First- apologies to those regulars who might have heard this before, but I'm still seething about it.
Sorry to hear of your problems at work. This is not the sort of thing you need at this time. Isn't his timing just wonderful !I was diagnosed in Feb 08 and have ups and downs, flares. At first my head (I'm a teacher) appeard to be quite supportive ( I now suspect he was only doing it so he coud be seen to be making reasonable adustments and only did it out of legal obligation. Cynical? Moi?) but over the last 3 months things have been getting worse. I was told in July that he was starting capability procedures and set me targets, with the threat that if things didn't improve, it could lead to dismissal. There had been no prior warning that there were concerns about my performance and some of the accusations weren't even true . These were based on the malicious comments of a colleague. All this came just after my dad passed away so I was rather emotionally fragile .I was so shocked and devastated. Fortunately for me, there is a policy in place, and I have a very supportive union rep. Are you in a union? I agree with the others that it would be a good idea to contact NRAS. I have been battling with the head for a while- he has tried 3 times to get me to step down a head of dept -I had a feeling this was going to happen when my part time colleague left, and I was diagnosed with RA, that he would try to get me to go part time and appoint a new head of dept. Apparently this kind of scenario is quite common these days- if you don't do what they want, they find other means to force the issue. It stinks!!! It's already happened to other colleagues who just gave in . I've decided to fight it all the way- it's tiring and there are days when I just think 'stuff it', but I have promised myself that it gets too much, I will be the one to make the decisions.
I do hope everything gets sorted soon, and that you can enjoy your wedding.
Love
Maria
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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http://www.direct.gov.uk...ndProgrammes/DG_4000347
Hi Linda, Above is a link for access to work, explaining how this scheme can support you and your employer in making reasonable adjustments. Incidentally, not having a formal procedure as an employer is a very risky business for them, as they have legal responsibilities and obligations to you as an employee with a disability and the law is on your side. Hope you find the link helpful and I hope you find Access to work as supportive as I did. Take care and best wishes for your wedding and future married life xx Love from Liz xx
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Rank: Newbie
Groups: Registered
Joined: 2/15/2010
Posts: 3
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Thanks so much to everyone who has posted such excellent advice on here, I will follow it all up. Thought I'd let you know the latest updates. I had the "independent" occupational health assessment yesterday and let's just say it bore as much resemblance to independent as I do to HRH The Queen. HR had thoroughly briefed them beforehand that they wanted me to reduce my hours and that was the main thrust throughout. When I explained that working from home just the one day a week was helping me cope, it was explained (by the independent health assessor) that the company felt this wasn't appropriate to the job role as it was a "5 days a week job". However they'd be happy if I reduced my hours and started later and ended earlier or worked 4 days a week to help with the fatigue. Could someone explain to me how and when 4 days work ever equals a five day a week job?
I think it's time I got myself some "independent" help, so am off to ring everyone I can think of.
Thanks again to everyone on here for your support. Linda x
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Rank: Newbie
Groups: Registered
Joined: 8/1/2010
Posts: 9
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Hi Sorry i am late in contacting you i am new to forum just getting ther hang of it ! It looks to me that the company or at least your manager is breaking the DDA working from home with a computer set up and linked to work is the least they can do .So many people do this now .During my job I have arranged this for a number of peoople under the DDA in my area .It works brilliantly from the comnpanies point of view they get a better deal and more work out us as we not so exhausted by work nor distracted by noisy offices .Go for it by law they must comply with this as a reasonable adjustment .You will be far less likely to be of unwell they win so do you Good luck kate 
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