Risk Assessment for interactions with people with Severe and Very Severe ME/CFS -an essential and important inclusion in the new NICE Guidelines

 

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 knowledge, experience, attitude and expertise the practitioner has in advance; the person with Severe/Very Severe ME needs to know who they are about to trust potentially with their life. 

They need to be sure that the person really knows about Severe/Very Severe ME, how fundamentally physically ill and vulnerable people are and how to safely interact and not cause deterioration. 

Risk Assessment should concern not only your interventions but interactions; if you do not come from an organic interpretation of illness, you will not be coming from the right understanding required. 

How to approach the person should be included in the Risk Assessment, for every nuance, ie movement, speech, timing, noise exposure, light exposure, physical contact, cognitive demand, of any interaction, can be neutral, helpful or harmful. 

The practitioner should be aware not only of what their intended intervention might be, but how they will carry it out, for example:

How they will enter the room, how they will communicate with the person, based on individual need, what clothing, colours, materials they will wear,  how any movement might impact upon the person,  how perfumed products of any sort may impact,  what level of light is tolerable to the person, the risk of symptom deterioration .

Before any intervention can be safely suggested, there is much to be learned about how to safely engage with the person and how the illness impacts them, 

It is absolutely essential that the practitioner’s understanding of the illness and how they interpret it is made clear. 

Risk Assessment in Severe/Very Severe ME requires an organic approach. Apart from awareness of the disease itself, it should be based on knowledge and awareness of how anything they might do, may affect symptom exacerbation or health deterioration. 

The Risk Assessment should proceed from a partnership perspective in which the individual and/or their chosen representative has personal input regarding their physical experience and needs. 

Symptom reaction and hypersensitivities must be included in the assessment; general assumptions will not do at this level of need and severity of illness. It is too easy to get this wrong. 

The person must feel safe and reassured that they are listened to, heard, acknowledged and respected, not misinterpreted or ignored. The person’s environment should not be contaminated or impacted negatively by any home visit. 

Any inadvertent harm by unaware practitioners or inappropriate recommendations or contact must be avoided. 

Risk: 

R= Respect. You must respect the person and know how seriously, physically ill they are. 
I= Intent. Your intention, above all, must be to do no harm. 
S= Safety. You must approach the person with massive sensitivity, taking full account of their acute environmental hypersensitivity and full symptom experience. 
K=Knowledge. You must have relevant and up to date medical knowledge of symptoms, system dysfunction, physical investigations, tests, treatments and an understanding of how to aid the person in accessing them. You should have an idea of the impact any suggestion or interaction and the dangers of post exertion deterioration. 

These are the key components. 

Any suggested pathway or intervention must involve an explanation of any potential risk, impact or side affect, specifically in relation to Severe/Very Severe ME. 

A plan for what to do if deterioration occurs, following engagement, needs to be in place and responsibility taken. It is important to ensure that the person has fully comprehended the information. 

A person should never be left harmed, deteriorated, their life made impossibly difficult to manage, from a home visit, through a lack of awareness. Zoom appointments rather than outpatient’s appointments should be routinely offered for those too ill to engage or go to hospital.