NEW CARE DOCUMENT: SEVERE ME; WHEN YOU HAVE TO SAY, "GO AWAY



NEW CARE DOCUMENT,
SEVERE ME; WHEN YOU HAVE TO SAY, "GO AWAY".
I am very excited to announce our brand new Care Document, which you can download from the link below. Here is an extract, raising some very important issues around how people can easily be misinterpreted by Assessors and the importance of a Risk Assessment.
"People with ME need a biomedical interpretation of their disease and recognition that it is a neurological disease in order to truly understand their needs.
Be aware of any language used in reports or assessments incorporating the words, “ feels as if”, for example, “ the person feels as if their symptoms are too extreme to engage,” rather than the more accurate phrase, “the person’s symptoms are too extreme to engage.” Or “ the person feels as if their pain is so extreme it overwhelms them” as opposed to “ the person’s pain is extreme and overwhelming”. Or, “the person feels as if they have been poorly treated and misinterpreted”, as opposed to, “ the person has been poorly treated and misinterpreted”.
The phrase, “feeling as if”, is potentially a denial of the person’s true reality, an implication that it is not necessarily as bad as it feels, especially if they change their thoughts and perceptions; it is a judgement about the person, whilst implying an empathy that is actually missing, whereas stating how something is, is factual and will represent the person’s true experience.
Other phrases, such as, “needs encouragement” or “ requires reassurance”, may also indicate an underlying psychosocial approach that will risk denying the person’s correct level of need for support. If you are seen as “ needing encouragement” to do things, rather than recognise the impossibility of doing things and therefore needing full support, your needs may well be misinterpreted and misrepresented.
Any assessment needs to be agreed with, by the person being assessed, for accuracy, language and interpretation of need, though this may be difficult with severe cognitive issues and breaks in communication pathways.
Any assessment must accurately reflect the person and how they must be approached safely.
A Risk Assessment needs to reflect the very real dangers and risks to symptom exacerbation or health deterioration that interaction imposes and suggest realistic ways round this.
The way a person communicates and how long it is realistic to engage with them should also be recorded. It is worth remembering that the worst case, not just the best moments of possible engagement need to be recognised, considered and recorded to ensure the reliability and usefulness of the Risk Assessment.
A good Risk Assessment protects the person and their carer and should provide detail that supports any care to be provided.
The importance of listening to the person and working in partnership to get it right for them, in the right moment for them, is absolutely paramount.
Great unnecessary suffering and potentially long-term harm can sadly ensue from the ignorance and unawareness of others.

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