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.
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.