"..for let us carry on our work, even though it be no more than the work of an ant, infinitesimally small and with unforeseeable results. Now is the hour of the garden and the night..."
Abbe Monchanin. (Living Simply in an Anxious World. Robert J Wicks Paulist Press 1998 p.47)
Emails are flying , there's all kinds of discussions going on, outline papers are being written but what is not happening- and what needs to happen today or tomorrow at the latest- is the making of a firm decision. What is our stance to be ?
Is it to carry on co-operating with the NHS , in the hope that at the end of the consultation process, if we stand firm, we will make a difference, for surely they, the NHS, have to listen to us and all those they consult with ?
Or is it to say no ? No way, not another moment of this sham of a consultation exercise ?
It is very difficult. Perhaps it all comes down to how we see things ? John O'Donohue points out how "limited and narrow lives" result from a lack of vision. "It is a startling truth that how you see and what you see determines how and who you will be" (Anam Cara, Bantam Press, 1997 p. 89)
Without vision there is no direction, there is no urgency, there is no responsibility.
Martin Luther King : "I have a dream"- what a difference that made. Nelson Mandela made the ANC his vision; he famously said :" In my country we go to prison first and then become President " - what a stand he took. Mother Teresa, a penniless nun , built a ministry that reaches out to the poor on ever continent - how ? She once said : "Do not wait for leaders; do it alone, person to person. "
What do we see when we look at the lives that people with ME have to endure ? Today is September 1st. I can say that my wife has spent this entire summer staggering from her bed, in constant pain and agony to at the very most, a bench in the garden, there to sit in huge discomfort ,barely able to breathe, unable to bear touch, light, sound.
I attend meetings with my fellow campaigners and witness such passion, such a desire for change, such a driving commitment - only to see how shamefully the NHS has sqandered this talent, in favour of a NICE-driven agenda that will help no one.
I see, I feel the pain and I am driven to act. I am driven to say No more !
I am driven to take a radical stand , in the belief that the real power comes only when we have made our decision. One thing is for sure, there is no sitting on the fence with ME.
Monday, August 31, 2009
The ARSE Factor
Well, well :
"..in our experience consultations are largely public relations exercises; the choice is often almost predetermined, uncertainty is presented as fact and there is a dearth of evidence made available which local people can consider in expressing their views. It is not surprising that the public often feel that NHS consultation is a sham...
if there is consultation it should not be pseudo-consultation, with no proper regard for evidence or justification or a full evaluation of the options. The public are right to react against spin and should be treated as adults - able to balance clinical and financial arguments and able to say no."
The Sham of NHS Consultation on Service Provision by Sean Boyle and Roger Steer :
www.radstats.org.uk/no096/BoyleSteer96.pdf
It's taken me all this time, all these months of thinking that maybe I was being listened to, that at last just maybe there is hope, to find out the hard facts of life as expressed above.
So much unspeakable effort has been put into this NHS consultation process , by us patients and carers and for what ?
I am reminded of what Hugh Marriott expresses so well in a "Selfish Pig's Guide to Caring" Time Warner Book 2003 p. 325 : he calls it the ARSE factor when dealing with officials - Advice Reliability Statistical Evaluation Scale . It means that "the reliability of any piece of information is in inverse ratio to the degree of emphasis in which it is given."
If the NHS ever happens to tell you in utter confidence that you will be listened to, that you will be fully consulted with , think very carefully before wasting your precious time.
"..in our experience consultations are largely public relations exercises; the choice is often almost predetermined, uncertainty is presented as fact and there is a dearth of evidence made available which local people can consider in expressing their views. It is not surprising that the public often feel that NHS consultation is a sham...
if there is consultation it should not be pseudo-consultation, with no proper regard for evidence or justification or a full evaluation of the options. The public are right to react against spin and should be treated as adults - able to balance clinical and financial arguments and able to say no."
The Sham of NHS Consultation on Service Provision by Sean Boyle and Roger Steer :
www.radstats.org.uk/no096/BoyleSteer96.pdf
It's taken me all this time, all these months of thinking that maybe I was being listened to, that at last just maybe there is hope, to find out the hard facts of life as expressed above.
So much unspeakable effort has been put into this NHS consultation process , by us patients and carers and for what ?
I am reminded of what Hugh Marriott expresses so well in a "Selfish Pig's Guide to Caring" Time Warner Book 2003 p. 325 : he calls it the ARSE factor when dealing with officials - Advice Reliability Statistical Evaluation Scale . It means that "the reliability of any piece of information is in inverse ratio to the degree of emphasis in which it is given."
If the NHS ever happens to tell you in utter confidence that you will be listened to, that you will be fully consulted with , think very carefully before wasting your precious time.
Sunday, August 30, 2009
Structures of Misery
For at least the last three years two world class ME clinicians have been willing and ready to step in and offer a biomedical service here ; all that time we have fought , we have demonstrated overwhelming need, by conducting in-depth surveys that show that the severely affected in particular receive no service whatsoever; we have got our local MPs fighting for us we have applied overwhelming pressure.
To no avail.
All we get from the NHS is a continual fudging of the issue. So my wife lies desperately ill day after day, year after year with absolutely nothing being done to investigate her illness or to try and treat her.
We have no confidence , whatsoever, that the NHS has any intention of listening to us.
People with ME , around the world, are subject to massive Institutional Prejudice - the most insidious and difficult to rectify of all prejudices, for it is not just about the NHS. Prejudice against people with ME resides now within the very fabric of society, because of the lies that have been so successfully spread about the disease by the Medical Insurance lobby.
Harrington defines Institutional Prejudice as "Structures of Misery" - how right he is !
Institutional prejudice is the accepted way of doing things -the unthinking prescribing of CBT and GET -the ignoring of the fact that ME is biomedical, serious neurological disease and that these "rehabilitative" interventions will probably kill people with ME or render them bed-bound for decades.
It is the structural arrangements -the locking away, the sending of people with ME either to locked psychiatric wards or to behaviour modification clinics.
It is the prevailing attitudes and expectations - the ignoring of the most severely affected, the leaving them to rot for years with nothing.
Make no mistake, Institutional Prejudice is sheer , naked violence , for it is the slow but steady killing of people with ME by not meeting their needs; this is what we battle.
Our local surveys have revealed horrendous stories of institutional abuse - but I doubt that the NHS has even read them.
Stalling decisions, passing the buck, not including what we say - the tactics of suppression go on and on.
The recent Consultation Process has been a shocking eye-opener into what a cosmetic exercise "consultation" under New Labour really is. It is staggering how the truth of ME, that we patients and carers have conveyed, is being suppressed in favour of the psycho-social agenda that is at the heart of the deathmaking stance towards people with ME.
And now , this week, a deadline looms; we have been issued an ultimatum. Do we continue to co-operate with the NHS or not in the hope that we can make a difference ?
To no avail.
All we get from the NHS is a continual fudging of the issue. So my wife lies desperately ill day after day, year after year with absolutely nothing being done to investigate her illness or to try and treat her.
We have no confidence , whatsoever, that the NHS has any intention of listening to us.
People with ME , around the world, are subject to massive Institutional Prejudice - the most insidious and difficult to rectify of all prejudices, for it is not just about the NHS. Prejudice against people with ME resides now within the very fabric of society, because of the lies that have been so successfully spread about the disease by the Medical Insurance lobby.
Harrington defines Institutional Prejudice as "Structures of Misery" - how right he is !
Institutional prejudice is the accepted way of doing things -the unthinking prescribing of CBT and GET -the ignoring of the fact that ME is biomedical, serious neurological disease and that these "rehabilitative" interventions will probably kill people with ME or render them bed-bound for decades.
It is the structural arrangements -the locking away, the sending of people with ME either to locked psychiatric wards or to behaviour modification clinics.
It is the prevailing attitudes and expectations - the ignoring of the most severely affected, the leaving them to rot for years with nothing.
Make no mistake, Institutional Prejudice is sheer , naked violence , for it is the slow but steady killing of people with ME by not meeting their needs; this is what we battle.
Our local surveys have revealed horrendous stories of institutional abuse - but I doubt that the NHS has even read them.
Stalling decisions, passing the buck, not including what we say - the tactics of suppression go on and on.
The recent Consultation Process has been a shocking eye-opener into what a cosmetic exercise "consultation" under New Labour really is. It is staggering how the truth of ME, that we patients and carers have conveyed, is being suppressed in favour of the psycho-social agenda that is at the heart of the deathmaking stance towards people with ME.
And now , this week, a deadline looms; we have been issued an ultimatum. Do we continue to co-operate with the NHS or not in the hope that we can make a difference ?
Friday, August 28, 2009
The stench of spin
At who knows what cost, us carers and patients have thrown everything into an NHS "consultation" process, that quickly became clear was pre-determined from the start, in favor of a CBT/GET-based NICE service. Now the cards are on the table and we carers and patients must choose how to respond - do we continue to co-operate with the NHS or not ? If not, what do we do next ?
These are momentous, difficult decisions that will have ramifications not just locally but for all people with ME. At last patients and carers are taking a stand against the insitutional neglect of this horrible disease.
Following on from what I was exploring yesterday, I have been hugely uplifted this morning reading a passage on activism from Thomas Merton, who was a contemplative American monk.
He advises : "struggle less and less for an idea and more and more for specific people...In the end it is the reality of personal relationships that saves everything." THIS is the key to ME activism. Don't fight so much for the Canadian Definition as for one person - then its real, then there's no stopping you, then there is no barrier to truth.
#
Merton's advice on serving truth, not a myth and dealing with the inevitable dissapointments along the way, is exactly what I need to hear this morning.
These are momentous, difficult decisions that will have ramifications not just locally but for all people with ME. At last patients and carers are taking a stand against the insitutional neglect of this horrible disease.
Following on from what I was exploring yesterday, I have been hugely uplifted this morning reading a passage on activism from Thomas Merton, who was a contemplative American monk.
He advises : "struggle less and less for an idea and more and more for specific people...In the end it is the reality of personal relationships that saves everything." THIS is the key to ME activism. Don't fight so much for the Canadian Definition as for one person - then its real, then there's no stopping you, then there is no barrier to truth.
Dear Jim,
Do not depend on the hope of results. When you are doing the sort of work you have taken on, essentially an apostolic work, you may have to face the fact that your work will be apparently worthless and even achieve no result at all, if not perhaps results opposite to what you expect. As you get used to this idea, you start more and more to concentrate not on the results but on the value, the rightness, the truth of the work itself. And there too a great deal has to be gone through as gradually you struggle less and less for an idea and more and more for specific people. The range tends to narrow down, but it gets much more real. In the end, it is the reality of personal relationships that saves everything…
#
Merton's advice on serving truth, not a myth and dealing with the inevitable dissapointments along the way, is exactly what I need to hear this morning.
Wednesday, August 26, 2009
The Value of Pacing
It has taken me a long time to realize how differently things are done here in the emotional and physical desert, where I find myself as a carer . If its ego, reputation, acknowledgment you are after, then here is the loneliest place , for your companions, other campaigners, patients, carers, if there are any, are scattered far and wide. In any case they are far too tired, far too overloaded, far too stressed to be that concerned about stroking your fragile ego.
My brilliant contributions continually disappear into email limbo; there is only ever the all-pervasive silence of this place.
You could go crazy.
How frustrated I still get that we do not meet and plan a "strategy", that we have not collectively drawn up an "action plan". You know, what is our "mission statement" ? In another time, I used to teach these "management" strategies to struggling teams.
But here is the learning : everything that is reckoned to be so essential in the everyday, holds little relevance here.
Except that we are eye-poppingly effective when we do meet with the NHS, not in any airy-fairy way, but in a hard-hitting, sophisticated master of the facts way. Cross us at your peril, for we are going all the way to the top with this ; we know the system inside out, probably more than most professionals, we are very well connected indeed and we are already more than halfway there.
Out of the silence, the constant sickness, pain, exhaustion, the impossible demands , the almost complete lack of a formal structure, when it comes to delivery, we patients and carers emerge, united like a hurricane, all guns blazing.
It's all to do with the power of love, that is my only possible conclusion.
So I have to learn to trust the process more. To pace my own spiritual, emotional and physical growth much more gently , knowing that when it matters , everything comes together in the most extraordinary way.
My brilliant contributions continually disappear into email limbo; there is only ever the all-pervasive silence of this place.
You could go crazy.
How frustrated I still get that we do not meet and plan a "strategy", that we have not collectively drawn up an "action plan". You know, what is our "mission statement" ? In another time, I used to teach these "management" strategies to struggling teams.
But here is the learning : everything that is reckoned to be so essential in the everyday, holds little relevance here.
Except that we are eye-poppingly effective when we do meet with the NHS, not in any airy-fairy way, but in a hard-hitting, sophisticated master of the facts way. Cross us at your peril, for we are going all the way to the top with this ; we know the system inside out, probably more than most professionals, we are very well connected indeed and we are already more than halfway there.
Out of the silence, the constant sickness, pain, exhaustion, the impossible demands , the almost complete lack of a formal structure, when it comes to delivery, we patients and carers emerge, united like a hurricane, all guns blazing.
It's all to do with the power of love, that is my only possible conclusion.
So I have to learn to trust the process more. To pace my own spiritual, emotional and physical growth much more gently , knowing that when it matters , everything comes together in the most extraordinary way.
Tuesday, August 25, 2009
Do not mess us about
I presume, although I still do not know for certain, that this morning's meeting is not going ahead. No one has told me one way or the other.
Those "organizing" this meeting are paid to do just that; that is their job. And when they sit around the table with us, "they" are all receiving a lot more money than most of "us".
It is "us" though who have to deal every moment of every day and night with the screaming disease that is ME. My life is totally dominated by the person I care for being in constant pain and suffering from an overwhelming , never-ending galaxy of symptoms. This takes up all my time and often makes me very stressed indeed. So much so, that any additional stress, I take on, has to be weighed up very carefully indeed.
I have chosen to enter into this struggle for a biomedical service; I accept and will try to deal with the cost as best I can.
What I do not accept and find so maddening is the incompetence that I daily have to deal with, like being messed about over a meeting; that is far more devastating to me than anyone will ever know. I may be a lowly unpaid carer, but I do demand and expect respect.
Those "organizing" this meeting are paid to do just that; that is their job. And when they sit around the table with us, "they" are all receiving a lot more money than most of "us".
It is "us" though who have to deal every moment of every day and night with the screaming disease that is ME. My life is totally dominated by the person I care for being in constant pain and suffering from an overwhelming , never-ending galaxy of symptoms. This takes up all my time and often makes me very stressed indeed. So much so, that any additional stress, I take on, has to be weighed up very carefully indeed.
I have chosen to enter into this struggle for a biomedical service; I accept and will try to deal with the cost as best I can.
What I do not accept and find so maddening is the incompetence that I daily have to deal with, like being messed about over a meeting; that is far more devastating to me than anyone will ever know. I may be a lowly unpaid carer, but I do demand and expect respect.
Monday, August 24, 2009
We deserve more !
Reflecting yesterday upon how the NHS wants us local campaigners to compromise, to sign up to a document that increasingly reflects the institutional bias towards ME patients, a document that includes CBT and GET and is becoming more and more NICE biased ; all of which is an outrage, especially considering the time a lot of us have been putting into this "Consultation" process.
I was driving along and it hit me, so hard I punched the steering wheel : WE DESERVE MUCH MORE THAN THIS !!! We deserve the highest possible standards of honesty and transparency. We have invested so much into this process at who knows what cost, under the most appalling conditions , we deserve the most accurate outline of a proper biomedical, consultant led ME service that there has ever been.
We have got this far because we have raised our standards to the highest possible level -for that is what ME patients and carers deserve and need so bad. In my mind there is no question of compromise.
There just is no compromise upon the medical truth of ME.
I was driving along and it hit me, so hard I punched the steering wheel : WE DESERVE MUCH MORE THAN THIS !!! We deserve the highest possible standards of honesty and transparency. We have invested so much into this process at who knows what cost, under the most appalling conditions , we deserve the most accurate outline of a proper biomedical, consultant led ME service that there has ever been.
We have got this far because we have raised our standards to the highest possible level -for that is what ME patients and carers deserve and need so bad. In my mind there is no question of compromise.
There just is no compromise upon the medical truth of ME.
Saturday, August 22, 2009
What is an activist ?
There is much talk about the meaning of ME Advocacy and Activism at the moment from the likes of John Herd and Hillary Johnson . Their message is simple : we have lost the plot.
I am not sure, though, we ever had it. If the big ME organizations have become so corrupted, if people's idea of advocacy is posting messages to and from each other on the internet, if oh, so viciously, so cleverly attacking every decent person who stands up and tries to make a difference, is taken to be acting politically, then we deserve what we have got.
Who let the big ME organizations get so lazy and corrupt ? Who so lost sight of reality that they think that any of our postings make a button of difference ? Who has let the vicious fringe wreck so much destruction ?
My wife has been severely ill for the last 16 years. In all that time I have seen chance after chance squandered, attacked, rubbished . I have seen the psychiatric lobby run rampage with their crazy theories, that should never have been allowed to grow legs, they are so weak and insubstantial.
The ME Community , had it got its act together, should have had no trouble whatsoever blowing the psychiatric lobby out of the water, years ago !!!
If it had the first idea about activism that is.
But clearly it did not , so here we are : lives wrecked, untold , ongoing suffering and a whole bunch of lists and groups that frankly don't matter a damn.
Is this is all we have to show for all those years of effort ?
I am not sure, though, we ever had it. If the big ME organizations have become so corrupted, if people's idea of advocacy is posting messages to and from each other on the internet, if oh, so viciously, so cleverly attacking every decent person who stands up and tries to make a difference, is taken to be acting politically, then we deserve what we have got.
Who let the big ME organizations get so lazy and corrupt ? Who so lost sight of reality that they think that any of our postings make a button of difference ? Who has let the vicious fringe wreck so much destruction ?
My wife has been severely ill for the last 16 years. In all that time I have seen chance after chance squandered, attacked, rubbished . I have seen the psychiatric lobby run rampage with their crazy theories, that should never have been allowed to grow legs, they are so weak and insubstantial.
The ME Community , had it got its act together, should have had no trouble whatsoever blowing the psychiatric lobby out of the water, years ago !!!
If it had the first idea about activism that is.
But clearly it did not , so here we are : lives wrecked, untold , ongoing suffering and a whole bunch of lists and groups that frankly don't matter a damn.
Is this is all we have to show for all those years of effort ?
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