Risk Assessment in Severe/Very Severe ME


Stonebird

It is a massive risk for anyone with Severe ME to let any medical professional into their life. 

Our (painful) experience has taught us the importance of carrying out a Risk Assessment of the professional that the person with Severe ME is about to trust potentially with their life, to make sure they really know  about Severe ME and how fundamentally physically ill the person is.

R.I.S.K  A.S.S.E.S.S.M.E.N.T :

Respect :I need to feel you respect me and know how seriously ill I am
Insight :I need you to have insight and awareness into the physical dysfunction in Severe ME.
Sensitivity:I need to know that you will approach me with immense sensitivity taking account of my acute environmental hypersensitivity
Knowledge : I need you to have in depth medical knowledge of system dysfunction , investigations, tests, treatments and an understanding of how to aid me in accessing them
 Awareness :I need you to show that you are aware of how you approach me and how easily I can be harmed by what you might suggest, because of my frailty and illness.
Sincerity :I need you to be focussed and sincere in your intent and ability to help me.
Stillness :I need you to be centred in stillness and be very aware of my needs and my communication difficulties and how you might unintentionally make me more ill
or increase my symptoms.
Empathy:I need you to try and understand my reality and relate to it in all you communications, your contact and any suggestions you make to help me, realising the need for flexibility in every moment.
Sharing :I need you to share your ideas with me and include me in any decisions, however complicated that may be to figure out, so that I know you have considered the risks to my heath and well being.
Sensible :I need your input to be sensible in terms of my physical reality not just yours, which is so very different to mine, so that it does not do harm to me under the guise of caring, yet not considering me in reality.
Mindful :I need you to be consciously aware of every interaction and its possible impact
Experience :I need you to have in depth medical knowledge and experience
Non- judgemental :I need you to see me clearly and understand my experience, not judge me falsely with psychosocial misinterpretations that negate me and my severity of illness.
Together :I need you to work together with me, not impose wrong treatment pathways and then blame me when you harm me or they fail.

Greg & Linda Crowhurst (c) 2014



Comments

  1. I use wanted to say thank you for writing this. It is so true that doctor's and anyone else that may care for you, know what is going on with us.
    You couldn't have said it any better.

    Thank you once again, Pinklady

    ReplyDelete

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

THE STONEBIRD DEFINITION OF SEVERE ME

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis