ME/CFS sufferer . Does anyone know how to get a support worker?

Posted , 4 users are following.

I notice in some posts that people refer to having a support worker. can someone tell me how to get one and what they can help with. I have an sea assessment coming up and am very worried as the last assessor lied about everything.

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4 Replies

  • Posted


    Do you mean a Support Worker to support you with going out or support at home with cooking because you can't do that yourself or because you're unable to go out alone? Or do you mean someone to support you through your next ESA assessment? Someone to help you with your housework? If you can be a little more specific then i can help you further.

    • Posted

      Hi Denise. its specifically to help me at the esa assessment. As they have no understanding of the post exertional malaise which is a defining symptom of 'ME' they also use intimidating tactics and refuse to read drs letters etc. I would feel a lot better if someone was present to speak up if i am feeling too ill or just forget to explain something. To give me moral support also. My Mother is 93 and she wants to come and support me but i dont feel its fair on her. They made up a whole series of activities when they completed my last assessment just lied about what I had told them.

    • Posted


      There's isn't a support worker that you can have to support you to an ESA assessment. CAB used to support people for this but because of lack of funding they no longer do this, well most don't at least.

      When you see people having support with them during an assessment, this is a family member or friend. It is possible to get advicers to support you during a Tribunal hearing, but not assessments.

      Do you have a friend that can go with you? or any other family member?

      Unfortunately having someone with you won't make them read your evidence. If they read through the evidence then this is usually done before or after the assessment. You also have another option of recording the assessment, but you'll need to ask for permission for this. I believe they will record an ESA assessment for you, if you ask (sometimes) or you can record it yourself.  It's PIP assessments they won't record. If you wish to record it yourself again you'll need to have permission to be able to do this. Dictaphones, mobiles etc are NOT aloud to be used for this purpose. You must use either a CD or taper recorder and you must produce 2 identical copies and 1 must be handed in at the end of the assessment.

      Hope this helps and i'm sorry there isn't an easy solution of anyone that can support you during the assessment.

  • Posted

    Well I got a social worker through my physciatricts. But not sure about that although I call her a support worker go 2 your doctors and tell them ur having trouble coping and they may refer you.good luck

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