Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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social services in the uk.

Discussion in 'General ME/CFS Discussion' started by Alison2, Mar 22, 2015.

  1. Alison2

    Alison2

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    Does anybody have recent experience of social services /care direct in the uk? I live alone, only family believes its psychological.I am really struggling.now tipped over or tipping over into very severe me.I am now at point or getting to it where will have no choice but to ask them for help.but I am wary/scared.asked for help couple of years ago, refused.one of the reasons being they felt I needed encouragement not help.
    (Am much worse now) and there has been mmuch about re-enablement from social services etc
    also had home helps , a long time ago, and my experience wasn't good.
    Have difficulty writing so may not be able to write again for a while.but does anybody have or had recent experience of social services/care direct etc.
    thanks.
     
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  2. ukxmrv

    ukxmrv Senior Member

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    London
    I had a social care assessment and the social worker was very nice and understanding. He knew of a lot of resources in my area and organised what he could for me. Sadly because I have a partner there wasn't much in the way of actual help or care available.

    If I was in your position I'd contact social services and ask for a re-assessment. I found the phone number on the internet and did this myself. My GP was useless.

    Good luck.
     
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  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @Alison2

    I'm not from the UK so cannot offer anything constructive in terms of your request for help.
    I did want to say that it's good that you reached out and hopefully someone will have some specific experience that will be of use to you.
    It might help, if you're comfortable to share your location (general area of the UK) where you are as help is often location specific.

    I'm sorry that you are experiencing this illness so severely and in such isolation. There is still hope that your family may come around to understanding the reality of your illness. I hope so.

    Take care,
    SD
     
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  4. Countrygirl

    Countrygirl Senior Member

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    Alison, I think it depends on your locality and the individual social worker's experience with ME. I asked for help two years ago, and it was a disaster. The social worker told me if I had ME that I must have been a heavy drinker! His understanding of ME was worse than non-existent and he was not prepared to listen. It does sound as if you will have to call for their help, and before you do, I would suggest that you prepare an educational pack on ME for the social worker. I am sure people here will be abe to direct you to some leaflets and books for you to give them. Maybe even loan them a copy of Voices from the Shadows. Once they understand, I am sure they will do their best.

    I hope all goes well.

    Can you say which region you are in?
     
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  5. rosamary

    rosamary Senior Member

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  6. Alison2

    Alison2

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    Thanks everyone.unsure about putting where I live- not sure why - but I live near Bristol.
     
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  7. charles shepherd

    charles shepherd Senior Member

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    Alison

    I'm very sorry to hear about all the problems you are facing with social care

    We have a social work expert - Cathy Stillman Lowe - who works with us at the MEA

    Cathy has written a very helpful leaflet on how to get the best from social services if you have ME/CFS

    Cathy has just fully updated this information and the newly revised leaflet should be available next week if you want a copy.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Alison2

    I'm hoping that you've found some information that might help you find the resources you need.
    If you're really struggling what you need most is rest.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @Alison2

    You mentioned earlier in your posts that your family members think ME is psychological.
    I have written two documents (so far) toward educating others as to what ME is.
    Given how severely ill you are and how much difference family and friends can be in assisting I am providing links to the documents hoping it might help you with getting help from those around you.
    Links: http://forums.phoenixrising.me/index.php?threads/a-document-collection-of-various-me-videos.39007/

    http://forums.phoenixrising.me/inde...use-to-help-pwme-get-accurate-info-out.38886/

    SD
     
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  10. Alison2

    Alison2

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    Hi @Snowdrop having difficulty writing (and reading) just now , am going to have look later, when can.
    Thank you for letting me know about this.
     
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    I understand.
    No need for you to do much but browse the topics maybe (later).
    The info is really for those who don't know much or understand ME.
    Take care,
    SD
    (no response necessary)
     
    AndyPandy likes this.
  12. Seanko

    Seanko Senior Member

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    Swindon, UK
    Your local authority should have a care line. My experiences of organising care for my mother in Swindon are as follows:

    1 Phone care line, asked about needs
    2 Appointment with occupational therapist (OT) is arranged. An OT is like a cross between a nurse & a social worker
    3 OT visits you to establish needs & eligibility
    4 OT makes arrangements for needs

    Obviously, procedures & practices will vary around the country

    As example here is the website for the Swindon care line

    Swindon Careline

    Good luck
     

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