I’m very confused and disappointed 😖 After over a month, my work HR finally sent me my DSE assessment report.
The report was restricted to “desk” assessment and solutions. But we all know that a new chair or mouse aren’t the solution for the several RA symptoms and issues.
I spoke to the Physio Specialist who did my DSE, about my concern for the fatigue and flares I’ve started experiencing since diagnosis in August.
I talked to her about my 1 working from home day which in case of meetings I won’t be able to swap with a different one as per ‘new’ work policy which was made after I have communicated my diagnosis. She agreed that it was important for my body to have a day free from commuting. However she hasn’t mentioned this in the report! I’ve emailed her today asking her to include that if possible and called her to let her know. She just said that she asked them if I had 1 working from home day and they said yes... but that wasn’t the pint and she said that she can’t do anything about it now and can’t help me. I’m worried because I know my company isn’t too flexible about some stuff.
I called up NRSA for advice on what to say as the my meeting with HR is on Monday; but all lines busy 😞 finally I’ve emailed my Rheumatologist asking if she could write a note regarding these adjustments and specified which adjustments. She also said it’s not her remit but still wrote a note with all my new symptoms and issues; plus medications side-effects etc.
If the DSE Physio and my Rheumatologist aren’t the people to ask for help regarding these adjustments, then WHO is???!!!
I’m super confused and frustrated.
Does anyone have suggestions?
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regina79
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I’m no expert at all in this but is a dse assessment really what you needed because as you have said that is for desk assessment and solutions. Would an occupational health assessment have been a better option do you think ? Have you checked if your employer has an occupational health policy to see whether that is something they would offer you ? I hope you get this sorted soon.
If you look at the employers guide it has the support information you can take to your manager and explain. Sometimes we need to point things out for our employers, though really we shouldn’t have to. Best of luck regina, you will get there 🤗
I agree with KittyJ, it is an occupational health assessment you need. I have them alongside my DSE assessment. The DSE is for equipment, mouse, keyboard, chair etc. The Occupational health assessment is for things like reducing targets, lower workload during flares, breaks etc. You could also speak with the union who may be able to advise what you can do. X
I see :@ I had no idea. I think that the RA Employer guide lists them both so they just thought they’ll get their usual DSE Physio. I’ll See what the Union says. Thank you xx
DSE is really just the Desk Screen Equipment assessment and as KittyJ says an occupational health assessment might be a better option as is more rounded. When I had a DSE they just ignored all the issues apart from the desk and computer! Employers should make reasonable adjustments so being able to have a different day off if you have come in for meetings if you need it should be something to raise with your HR team when you speak with them. Maybe write a prompt list of what you want to discuss, so that you don't miss anything off. Hope all goes well.
Yeah, I was unsure when they said they’d get me a Physio to talk through my issues.. and then when she started talking about posture etc I realized that was unnecessary as I had desk assessments so many times!
I will definitely discuss with them but the problem is if they say that they can’t make these adjustments for me... in that case I could contact the Union and my own OH I guess. But I hope they don’t make it so difficult. X
Is it a large company you work for? If it is, they will have access to an occupational therapist at least on an ad hoc basis and can buy in the service.
If it’s a small company, although they will work with you as much as possible, they may not be able to if it severely effects their business. You could get your own occy health assessment as there are many freelance providers.
Is your RA stable, or are you still in the trial and error phase. It took over two years for me to get mine under any kind of control so you will hopefully improve.
Not really Cwendyn. I don’t think they have an OT. But I’m assuming that they can get one if they need to. But yeah they’re quite stingy in general. I’m on MTX since 10 weeks but it hasn’t worked yet. So I’m now also on steroids. A month course. Which is helping. But I do suffer from fatigue and started experiencing flares. Specially if I do too much. X
Hmmmm - so still the old trial and error bit. It's nasty and brutal. I feel for you. I went down the Plaquenil/MTX/Sulfa/Steroids route for 2 years. Now on biologics and ditched the steroids and in a much different place. Still take MTX and Sulfa too.
They will be able to buy in the Occy Health assessment - I have a few clients that are freelance and independent and do exactly what you need. So it is possible for them.
Can you have different work patterns until it's sorted out? I don't know what you do so it might not be possible. Some sort of agreement to work from home?
Yes sadly still on trial but then I’ve only been diagnosed in August, so quite recent.
I’ll suggest it to HR on Monday and will tell them what adjustments I think I need for the time being. We do have 1 Working from Home day allocated. The problem is that since we have a new head of dep. and since I’ve been promoted (back in May), they keep setting meetings and trainings on my Working from Home day. So they ask me to come in. Plus they also don’t want us to change that day for a different one... x
Could you join them via a remote link for the meeting. Something like Zoom would work really well in this instance.
No - none of the DMARDS worked. I took around 8mg of Pred a day that kept it down a bit. Still had to wear compression gloves as the burning in my wrists was intolerable and I could barely walk. Zero strength in my hands/knees. I made 3 attempts to come off the steroids. First one failed. Second time I persevered and had a blood test and an emergency rheumy appt. This then showed a huge spike in my inflammation levels as the Pred wasn't masking it so at the same appointment, I was prescribed biologics. Went back on steroids again for 6 weeks and by then, the biologics had kicked in big time. I've just had a 3 week flare, but until that, nothing at all. I am now back running my biz full time and have my social life back.
Honestly, there is a light at the end of your probably pretty dark tunnel.
Did none of those DMARDs work for you? That’s not good. But very pleased for you that the Biologics are working. I read about people being much better on them every day! It’s a shame they cost so much money and they can’t be given out to everyone sooner. X
I think it's getting easier to prescribe them now there are biosimilars. They're a quarter of the cost of the originals
What is it you do? I may be able to make some suggestions you can take back to your employer? Two of my team have AI disease along with me, so I'm pretty clued up about it
Hi regina79, I'm sorry to hear that you were unable to get much in writing from the physio.
You could try asking for a full assessment through the government's accesss to work scheme (DWP initiative). Which helps people with disabilities and long term conditions get into and stay at work. You can look on the DWP website and they have details for you to get in touch.
I've used this route in the past previously for my osteoarthritis related problems and they were good for travel support, equipment, and flexible working.
I hope your are able to get the adjustments that really help you.
Regina I think you need to sit down and really go through the employers guide yourself as all this information is in there, occupational health, Access to work etc. I have checked, have you read it yourself or did you just give it to your employer? Highlight the relevant parts to refer to when you speak to your employer. You will then have all the tools to get the help you need. It’s a very good booklet 😊
I read it but I think they are trying not to go into the ‘flexible’ work route with me... so they have “ignored” it. They’re not stupid but they simply don’t want to grant me too much.
And yes, I’ve already printed the pages and points I want to discuss with them on Monday. All done! I’m just worried that they won’t care unless there’s a specialized person who puts it in writing for me. Are they obliged by law to grant me flexible working ? I don’t know if they are. That’s my worry x
No - they're not bound by law to provide flexible working if it doesn't fit their business model and hours. For example, a small shop that has 1 or 2 employees and opens from 9am - 5pm. A, you wouldn't be able to work from home, B, the hours wouldn't be covered unless you reduced the hours and job shared.
The options in the guide also include DSE assessment specialist. So I suppose my HR thought that since they have that available, that is the option they’ll go for in my case. And that it will be enough. But clearly DSE is only a part of my possible and reasonable adjustments.
Apparently they only cover equipment and fares to work, but not adjustments as flexible work, etc. It’s not in the list so not sure:
What you’ll get
There is no set amount for an Access to Work grant. How much you get depends on your specific case. The grant will only cover the support needed to let you stay in work or self-employed.
The money can pay for things like:
changes to the equipment you use
special equipment
fares to work if you can’t use public transport
a support worker or job coach to help you in your workplace
a support service if you have a mental health condition and you’re absent from work or finding it difficult to work
disability awareness training for your colleagues
someone to help you at a job interview
the cost of moving your equipment if you change location or job
I had an occ health assessment and they said I had to apply to access to work and I'm now waiting for the assessment. Normally takes 4 weeks from application till you hear from them and then they come out and do an assessment in your work place. If have mixed connective tissue disease so not really sure how /if it will progress and likely prognosis but I'm hopeful they can offer some help!!!?? 🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻 Good luck with yours x
I used to work for the NHS and occupational health are there for assessments and totally non biased when it comes to the employer and the employees needs. They are there for you and are much better at helping you get the adjustments you need to let you remain in employment. In my case they helped me to remain in the job that I loved so much for probably far longer than I should have. They’re professionals who will stand by you and fight your corner, I’m sure if you were to see them they would report that a day working from home would be in your employers interests if it fits in with your current role.
Good luck with your meeting hopefully you can hear them out and then make them understand that you need their help and understanding any HR dept worth their salt shouldn’t make it difficult for you, after all there are disability laws which you have to back you up and they should know that.
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