Stonebird

Stonebird Linda and Greg Crowhurst March 2018

If you are care for someone, who is at high risk of deterioration in any moment from the slightest wrong intervention, for example someone with Severe/Very Severe Myalgic Encephalomyelitis, the MOMENT APPROACH is a structured way to:
  MAXIMISE the OPPORTUNITY to MEET   EACH   NEED   TENDERLY
It is key to providing high quality care:
TO MAXIMISE
This means creating a physical environment where there is maximum possibility for a positive and helpful interaction, Ease of access and comfort for the person are paramount. Anything practical that is required for care, needs to be in the best place to help the person.
The caring environment, however, is something additional, it brings a wider perspective, in that it is about the approach of the Carer. It is not necessarily concerned with doing things, though this may be required. It is more about knowledge and presence, awareness, attitude and intention.
The Carer is r…

Severe ME :
WHY A MOMENT APPROACH IS REQUIRED WHEN YOUR WHOLE BODY and head is on fire with multi- level pain, when you have unimaginably complex multiple system dysfunction, when you have massive indescribable cognitive disruption, when you are at a high risk of deterioration, just by someone being in the room with you, a Moment by Moment approach is realistically the only way that you can possibly get any of even your most basic needs met and even that is incredibly difficult and painful to achieve. Sadly too many people exist in this state for all or part of the time, when they have Severe/Very Severe Myalgic Encephalomyelitis, wrongly interpreted and associated with fatigue. If you take the first letters of the word “M.O.M.E.N.T, you could say that it means : M aximising
O the opportunity
M to meet
E each
N need
T tenderly We call this the MOMENT approach: MAXIMISING THE OPPORTUNITY TO MEET NEED TENDERLY If you are to care for someone at this level of illness, you must learn: a/.…

The house and bed-bound become invisible. The most severely ill, left chronically neglected, are at constant risk of harm or deterioration or misinterpretation and psychiatric abuse, even sectioning.
Those who are not so severely ill, but perhaps more so than those who can easily attend clinics, remain semi-visible and are likely to be described by clinicians who do not see the worst suffering as having Severe ME, when this is not necessarily the case. The most severe experiences are not necessarily seen nor fully comprehended, people who push themselves to see consultants, then deteriorate significantly afterwards as a consequence, once home again may also not be seen in their worst or post-exertional state. If people can only be seen when at their apparent best, the true nature of the disease and symptoms and their experience will be invisible. Furthermore, if tests can only be done in moments of potential tolerance, the outcomes may be very different. The issue may be easily misse…

Psychiatry, not just the PACE trial, has set back knowledge, understanding, treatment and recognition of people with ME and other poorly diagnosed illnesses for decades, encouraging weak diagnostic criteria that identifies no one, a focus upon a vague symptom of fatigue that is not necessarily even present in ME and non -investigation of serious symptoms. The influence of psychiatry upon the neurological disease, Myalgic Encephalomyelitis, dates from way before the PACE trial, which failed to back up any of the claims Psychiatry makes about the effectiveness of a psychosocial approach, which NICE unfortunately bought into, heavily skewed by psychiatric representation on the Guideline Development Committee for CG53 in 2007. One of the problems facing the creation of new NICE guidance is that the biomedical expertise needed to create an appropriate and safe biomedical pathway is not there in the UK, because of decades of psychiatric sway and influence. There is no biomedical national p…

Stonebird

A NEW VISION
http://stonebird.co.uk/new/index.htm

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 multi-system, complex physical dysfunction in Severe/Very Severe ME and enough awareness to know about and measure physiological dysfunctions in ME.

SENSITIVITY : I need to know that you will approach me with massive sensitivity taking account of my acute environmental hypersensitivity.

KNOWLEDGE : I need you to have relevant and up to date medical knowledge of system dysfunction , physical investigations, tests, treatments and an understanding of how…

The most insidious lie told about people with ME is that they are victims of “maladaptive thinking”; that they are ill because they think they are ill. A multi-million pound psychiatric racket has been built upon that premise, a toxic perversion of New Age thinking and neoliberalism. We dream all the time, here : of a new bathroom, of delicious food, of coffee in a cafe, of having friends round, of visiting family, of making things, doing things, enjoying things, like being able to step outside the door into the garden without being destroyed by the environment, of being free from pain enough, even if just for a moment, to really hold and feel each other, of finding anything to eat at all that is safe, of being able to move around freely, without causing catastrophic harm, or by just being present being a danger. But until my wife’s illness is physically investigated and treated, our entire life, every minute aspect of it will continue to remain on hold. That is what the psychiatric l…