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Help for the bedbound and severe

Discussion in 'General ME/CFS Discussion' started by justy, Nov 13, 2013.

  1. justy

    justy Senior Member

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    Hi all, I am looking for practical suggestions only on how to help the severely and very severely affected, those who cannot advocate for themselves as they are too ill, who cannot take care of their own daily living needs.

    What practical help and support is available to them? especially if they have NO family or friends to look out for them and are forced to live alone.

    I am especially hoping to have contact with anyone in the UK who is in this postiton or who cares for someone in this position. I know that daily living assesments can be done by social services, but how is this set up if the person themselves cannot do it? Will contacting social services only lead them into more trouble ie not being believed etc.

    Does anyone have any experience of organisations or charities or advocacy groups who can help to put a package together?

    It is shocking that people can be left in this state with no medical care for their illness but I know it is not uncommen in the UK if you have very severe M.E.

    Why don't our charities for M.E have schemes to help people - MS sufferers get help from their charities with clinics for Oxygen therapy and home visits and befriending schemes, as do the mentally ill. Why do our orgs not do more of this kind of work?

    Any suggestions or help gratefully received - but please no treatment suggestions - we are talking about people who have to be in darkened rooms all day and night with no money beyond small benefits given by govt to live on, who will not be able to have a 'correct' diet because they are lucky if they can eat at all.

    Cheers,
    Justy.
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  2. brenda

    brenda Senior Member

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    Hi Just

    I have been in this unfortunate position myself due to relapse.

    I contacted social services and was assessed at home and granted a home help coming in to shop, clean, iron, cook and wash my hair for me. I stipulated that perfumes were not to be worn and they complied. I had a lovely young woman but if she was off work, it was a bind to have to explain things to someone new.

    After year l improved and stopped the service gradually and would not hesitate to get help again though it is better psychologically to be independent. My various GPs have been reasonably supportive.
  3. justy

    justy Senior Member

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    Thank you @brenda for telling me about your own experiences. I think you are ight that an assessment is first needed by Social services. Did you need to prove your illness to them? if so was it your GP that provided the supporting evidence? What to do if GP is unsupportive?

    So glad to hear you improved from being so ill.
    Justy.
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  4. brenda

    brenda Senior Member

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    They would have had to get a report from my GP. I have had some tricky GPs but l believe there is an art to getting them in line. I always act respectfully and never waste their time or break appointments. It is important to convince them that one is not a hypochondriac . If a GP cannot be trained then one should tell them you cannot work with them and find another.
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  5. allyb

    allyb Senior Member

    Have you tried the 25% group Justy?..........though they have limited resources they have an (overstretched) advocacy service for people with severe ME.

    http://www.25megroup.org/home.html
    25% ME GROUP
    21 CHURCH STREET
    TROON
    AYRSHIRE
    KA10 6HT

    Telephone:
    Main Office: 01292 318611 - Office Hours 9.30 to 5pm - Monday to Friday


    Advocacy Worker: 0141 570 2938 Office Hours: Wednesday and Thursday 11am - 3pm

    They are really helpful and I'm sure that they would be able to give you information.

    Are you on Facebook Justy because.......
    They also have a face book page and the people that use it are mostly bedbound / housebound and as such are a mind of information as most are in similar positions of varying degrees. I think there is also a Facebook page set up very recently by the 25% group members to help and support those who are too severely affected to use the internet.....with letters, gifts, buddies and advocacy.....in memory of a severely effected sufferer called Bella who sadly died last week.

    Kindly regards
    allyb
  6. justy

    justy Senior Member

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    Thanks @allyb I am currently in the process of reading through their documents etc, which are helpful. I guess what I am really looking for is an advocacy worker for someone who is too severely ill to sort out their own stuff. They have caring, housing and medical needs unfulfilled.
    Unfortunately it seems to be a case of a carer having to sort all this out for them. Mnay with M severe M.E have no carer to do this.

    I will do what I can, but obviously am ill myself.
    I think I will try and call the advocacy worker myself and see what advice they give.It's a bit like the blind leading the blind though, isn't it?

    take care all,
    Justy .
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  7. brenda

    brenda Senior Member

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    There is an organisation called Stonham who support vulnerable people over housing etc. Sorry can't give a link from my android.
    justy and peggy-sue like this.
  8. minkeygirl

    minkeygirl Senior Member

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