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. AnonymousMarch 28, 2014 at 7:06 PM

    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.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
Read more

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more