RISK ASSESSMENT IN VERY SEVERE ME
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 multi-system, complex physical dysfunction in Severe/Very Severe ME and enough awareness to know about and measure physiological dysfunctions in me.
SENSITIVITY : I need to know that you will approach me with massive sensitivity taking account of my acute environmental hypersensitivity.
KNOWLEDGE : I need you to have relevant and up to date medical knowledge of system dysfunction , physical 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 focused and sincere not just in your intent to help me but in your actual ability to help me.
STILLNESS : I need you to be centred in stillness and be very aware of my needs and my communication difficulties, especially how, in any one moment, you might unintentionally make me more ill or dramatically 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 extraordinary 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 how, so that I know you have considered the risks to my heath and well being and listened to my concerns.
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 you do not do harm to me under the guise of caring, yet do not consider me in reality.
MINDFUL : I need you to be consciously aware of every interaction and its possible impact.
EXPERIENCE : Severe/Very Severe ME is so outside anyone's normal experience it is extremely hard to comprehend or understand. I need you to have relevant training, 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. Do not misinterpret me or blame me, if you fail to get it right.
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.
Please see : "Severe ME, Notes For Carers" http://stonebird.co.uk/Notes/index.html