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CFS/ME fit note issue.

gentlegee1976gentlegee1976 Member Posts: 34 Connected
As some of you will know, it's generally quite well known that CFS/ME is a poorly understood medical condition. My GP as professional and respectful as he is, doesn't seem to understand it at all. So much so, that I'm now in the process of transferring to another GP surgery as I don't feel I'm geting the care and help that I need. 

When I asked him to renew my fit note (DWP need it as I'm appealing to the UT) he stated that I "may be fit for work but I should avoid physically strenuous work". I spoke to my GP over the phone and asked him what he would advise me to do if I was required to attend work, but was undergoing a relapse or crash at the time, and therefore needed to rest at home. He refused to answer my question, despite being asked twice by myself.

A relapse or crash is when your symptoms can get significantly worse for a period of time. These relapses are a common part of my illness and often leave me housebound or bedbound for 2-3 days at a time. In the past 8 years I have never gone more than 2 weeks without having one.

I can't imagine there are many employers out there who would tolerate hiring somebody who may or may not turn up for work on any one given day, and would frequently be off sick.

Any thoughts please?


  • Ross_ScopeRoss_Scope Posts: 4,131

    Scope community team

    Hello @gentlegee1976, how are you today? 

    I'm glad you're switching GP, it's always a good thing to do when you feel as though you're not getting the support and care you need. A fresh pair of eyes and ears might help you massively.

    There will absolutely be employers out there who will accommodate you and your specific circumstances. They have a duty to make reasonable adjustments for employees, which could include measures for when you have a relapse. 
    From personal experience, though this may not always be the case, employers are more than receptive to making adjustments to accommodate disabled staff, what matters is that you are qualified to do the job. 

    Hope this helps. 

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  • janer1967janer1967 Member Posts: 11,199 Disability Gamechanger
    Hi I suppose this is a difficult one as some of the time you are abler to work but then at other times you are not and this applies to  other people but the frequency of your flare ups is the issue from an employment perspective

    But I agree some employers will take this into account and maybe there could be an element of home working if possible

    The work capability looks at your ability to do any type of work and not really on if you would be able to find employment as if you are found fit for work they can help with access to work and such like or maybe you can look for part time work

    A difficult situation to provide the best solution 
  • gentlegee1976gentlegee1976 Member Posts: 34 Connected
    This is my issue. I want to work, but sometimes my symptoms just won't let me. To say it's frustrating is an understatement.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 8,001

    Scope community team

    Hi @gentlegee1976. I hope you're able to get a GP that's more understanding of your condition.
    In terms of your benefit claim you can use fit notes that suggest adjustments in case that's what you're worried about. Did you ask them to change it and they refused?
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  • gentlegee1976gentlegee1976 Member Posts: 34 Connected
    edited September 2020
    Thank you, Adrian. I hope I can find an understanding GP as well.

    It was a different GP that issued my most recent fit note as my old GP (a very sweet, kind and caring woman) has now left the practice for reasons unknown. I've never actually met this new GP face to face and have only spoken to him over the phone for a few minutes. He seemed to know very little about my condition. Apparently, this lack of knowledge of CFS/ME is common in the medical community, even among hospital consultants and professors.

    I hope I can find a new GP who understands how ill I actually am.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @gentlegee1976, just wanted to check in. I really hope you'e able to find a more understanding GP soon!

  • gentlegee1976gentlegee1976 Member Posts: 34 Connected
    edited September 2020
    Thanks for your concern, Chloe. Just giving you a quick update. I've now switched my GP surgery. He has good reviews online and seems to be well liked. 

    A couple of comments from patients that have been posted online - 

    Since joining this practice around 6 months ago I have been treated fairly and the staff can't do enough to help. The doctor's are professional and very good, the receptionist are lovely and go out their way for you and so far I have no complaints. 

    Dr ____ is the best doctor in this practice, he has an exceptional manner and is very helpful - I definitely recommend him. The receptionists are always pleasant, & always notify if there is a delay.

    Very good practice. The doctors and nurses are knowledgeable and caring, especially Doctor _____. The reception staff are always pleasant and helpful whenever I ring up or visit. I can always get an appointment within a week.

    Reviews sound good, but I'll just have to wait and see. It takes time to find out if your new Doctor is any good.

  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @gentlegee1976, really glad you have been able to switch GP's. Please do let us know how you get on. :)

  • gentlegee1976gentlegee1976 Member Posts: 34 Connected
    Will do, thanks.
  • gentlegee1976gentlegee1976 Member Posts: 34 Connected
    Chloe, new GP is great. He has listened to my concerns and has been very helpful. Changing GP was just what I needed to do.
  • Cher_ScopeCher_Scope Posts: 4,038

    Scope community team

    @gentlegee1976 Ah that's great news, having a helpful GP who listens makes all the difference.  How are you keeping health-wise?  Good I hope :)
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  • gentlegee1976gentlegee1976 Member Posts: 34 Connected
    I'm no better, but thankfully not getting worse, either. Thanks for asking xxx
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