I’ve been quiet recently but could do with your advice once again.
I’ve been diagnosed with UCTD and numerous other things for a few years now and have been working from home for over a year due to my condition worsening, and it looks like I’m finally going to lose my job.
I’ve worked really hard to get where I am, achieved a masters degree, climbed up in my field, got to travel etc... so I’m not taking this lightly, but accept that once this all settles down it may be the necessary break I need to get on path with a new life that suits me and my diagnosis more.
Anyway...
I have numerous questions that no one seems to know the answers to and I’m not sure where else to turn:
- is there a point where you can be classed as disabled without claiming pip? So still get help and protection where needed but without claiming the benefits.
- Can you get help finding specialist suitable jobs? I can work from home for most of the time and might even be able to do part time if it was local and low stress.
- I’m not bad everyday but there’s no pattern to how I feel, so I’m scared of looking for a new job or discussing my situation with a new employer. I can feel fine for weeks then take a random turn and become horrendous for months. I don’t want to start a new job and be off ill every other week with no notice.
- If I end up having to go via the job centre is there any understanding for people with this type of condition, or are you still expected to go to interviews knowing you most likely won’t be suitable for the position due to unpredictable ill health.
- If the worst comes to the worst and you have to claim pip, is it really as difficult as it seems? I’ve seen other people on here struggle who i’d class as worse off than myself.
- Who do I speak to in regards to what happens next?
Any advice would be appreciated, but please be gentle I’m fragile haha
Written by
Croft1987
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Hi, I can relate to your problems so suggest you make an appointment with the Citizens advice bureau, they can help you with your queries - they helped me a lot. Good luck. Roselda
Hi croft,
In regard to in-work protection my employers send me for occupational health assessments (a couple of years apart) to assess my needs and to see if there was anything they could further do to assist my working. I’d suggest you suggest this to your employer as you get a copy of the report and if it doesn’t work out there could still be useful to you (or better still, improves your situation at your work). At that assessment I was advised I was considered disabled in respect of the disability act (separate purpose than for benefit assistance: this is for ).
In respect of help and employment going forward, there are a number of employment agencies who specialise in jobs for disabled people and people with medical issues. There’s also websites specifically for disabled applicants with full job descriptions - a quick google search brings them all up.
If you check the Gov website, they advise about job centre:
“Your local Jobcentre can help you find a job or gain new skills and tell you about disability-friendly employers in your area. They can also refer you to a specialist work psychologist, if appropriate, or carry out an 'employment assessment', asking you about: your skills and experience.”
The definition of disability under the legislation is very broad and someone with scleroderma would definitely be considered such, I was advised as I take long term medication (hydroxychloroquine) and it’s lifelong, that is why i was considered disabled (this was by the occupational health assessor who was a doctor). More info here:
Being under this definition affords you certain rights and protections in your employment.
I hope some of this helps; I work full time (sometimes from home - usually once a week at least) and train in sport too so I understand exactly how you feel. I am still hoping to qualify as a solicitor (in-house, there’s no way I could manage normal practice).
I really hope this helps and you get an occupational health interview!
I’ve had two occupational health reports from my current employer, who have classed me as disabled and advised that I continue to work from home with support from my employer, which my company basically won’t accept
I suppose if they think the role can’t be properly performed without attendance in the office (office?) they may end your employment - you might have to check the grounds they can end your employment on. I’m sorry, it’s a horrible situation I completely understand I often feel the same even with my supportive employer.
It’s an awkward one as I’ve been working from home for so long now and continued to produce the same quality work and attend meetings etc. The Doctors back up the occupational health reports too so it’s nice to have some support
I knew it’d come to an end though at some point so I’m surprisingly calm about it. I’m just ready to move on now but not sure how
I think you’re being very smart about it all. I’d start researching possible jobs - talk to agencies etc whilst you’re still in employment. Research possible careers etc. You might end up really excited for something new, I really hope that’s the case or perhaps you’d go down the route of consulting - self employed or through an employer so you choose when you work and for short contracts or maybe you’ll start your own business
Do you have a pension? I realised that I needed to reduce my hours - I was a GP, and applied to access my pension to make up the short fall. I had hoped to work part time, but they retired me due to ill health. I can now see that this was the right thing, though at the time I was devastated. X
I bet you were! It’s difficult to walk away from something you’ve worked so hard for, I’m trying to see it as taking a break whilst I learn to manage things better
I do have a pension but I’ve not been paying into it long so no idea how that’d work out for me
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or perhaps you’d go down the route of consulting - self employed or through an employer so you choose when you work and for short contracts or maybe you’ll start your own business 
Private or NHS diagnosis? Due to IVF.
Worsening Raynaud’s 
Someone to talk to?
Diffuse SSc Diagnosis
