Stonebird welcomes the inclusion in the New NICE guidelines of the need for a Risk Assessment for interactions with people with Severe and Very Severe ME/CFS. Having spoken up about and raised awareness of the importance of this issue for a very long time, we are particularly pleased to see that this has been included as standard procedure. We hope it will help to protect people. This is what we have to say about RISK Assessment: RISK ASSESSMENT IN SEVERE/VERY SEVERE ME https://stonebird.co.uk/morenotes/index.html It is a massive risk for anyone diagnosed with Severe/Very Severe ME to let any professional into their life. Very Severe ME is particularly so outside anyone's normal experience that it is extremely hard to comprehend or understand or know how to safely engage with the person. Our (painful) experience, over decades, has taught us the importance of making sure that professionals behave safely. Information, therefore, should be provided to the person concerning the
It has been hard for me to explain that an "assessment for services" can make me ill and i am not able to explain myself anyway. I have trouble using phone, answering questions but everyone expects me to speak for myself. I have been ghaving home care for 14 years so there is already information on file. Its just managers getting paid to fill in forms but no-one to take the time to learn about the condition and act accordingly,
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