Journal of IiME Volume 2 Issue 2 www.investinme.org A Severe ME-aware nursing model (continued) - the likely impact of any interaction upon the person. The prepared nurse can greatly lessen the chances of any deterioration in symptoms : ASSESSMENT : IMPLEMENTATION : It is the way the nurse approaches the patient with severe ME/CFS that determines the outcome of assessment. Particularly with ME/CFS, the underlying beliefs, knowledge and understanding the nurse has about the disease itself, could result in two very different assessments, depending upon whether the nurse believes ME/CFS is a physical disease or a mental health issue and whether they adopt an authoritarian "I know best" approach or a more empathic partnership style of relating. Not only are the nurse's views and understanding of the illness important, their awareness in regard to their own power and responsibility are vital. An authoritarian approach, coupled together with an assumption that ME/CFS is not a real disease, that somehow the "patient is just not trying hard enough" , or has in some way caused their illness by wrong beliefs, means that the assessment will be deeply flawed. PLANNING : Again, the nurse's underlying assumptions and knowledge of the disease will play a crucial role in planning any intervention. Unless the nurse is aware that the person with ME/CFS is a long term chronically-ill patient, who is unlikely to get better ( anyone severely affected for more than 5 years has a poor prognosis of recovery (DH2002)) , the planning may be way too hopeful with way too high an expectation of the patient. The nurse’s preparation must be done with awareness before intervention in the patient’s life. Invest in ME (Charity Nr. 1114035) Implementation needs to focus on acute awareness of the severity of illness and the multi-system dysfunction the person is experiencing. This cannot be emphasised enough or over-played ; it is the key to any successful intervention. The nurse must be able to be flexible and understand the potential impact of any movement, speech, action, upon the severe ME/CFS sufferer and must always trust and listen to the patient and their reaction. The response of people with ME/CFS is not always predictable; often the opposite rather than the expected occurs. This must be understood by the nurse . It would be well to consider alternative interventions in advance, so the nurse is prepared when something is not working. Even if an intervention is not possible at one moment, it may still be possible at some other point in time, for there are fluctuations of experience of symptoms within the general chronicity of the illness. EVALUATION : Integrity, wisdom and patience are required. Any improvement or response may be extremely small, almost invisible perhaps to the nurse, yet the person with severe ME/CFS may discover significant benefit from what might seem like a small, even insignificant outcome. Patience is particularly required, both for the nurse and for the patient. (continued on page 39) Page 38/74 Planning should be focused upon the way the nurse interacts and responds to the patient. Without key- planning the dangers of an immediate worsening of illness and a long term relapse through poor understanding are likely outcomes.

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