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Stated today, June 21st 2018, during the ME Research and Treatment debate, Westminster Hall, UK Parliament.
Thank you so much Liz Twist for the acknowledgement and to Luke Pollard for the tribute.
That’s me!
Category: Decision Makers
My Postcard To Caroline Dinenage, Minister for Health and Care
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From my MP, the Rt. Hon Nick Brown:
“Due to my obligations as Opposition Chief Whip, I will not be able to attend the Westminster Hall debate on 20 February. It is also convention that the Opposition Chief Whip does not sign Early Day Motions, so I will not be able to add my signature to EDM 271.”
So, I’ve just sent a postcard to Caroline Dinenage, Minister for Health and Care, for Thursday’s June 21st debate.
Except it’s this big. . . And my lived-truth message is on the front of it.
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What else does the UK Minister for Health & CARE not know about Myalgic Encephalomyelitis?
That for 250,000 UK ME patients there is:
NO CARE
NO Appropriate Guidelines/ Policy
NO Teaching NO Knowledge
NO Doctor NO Consultant
NO Research NO Treatment
(ME is not taught in Medical Schools or Training Colleges)
WHAT ME PATIENTS NEED
6 POINT PLAN:
1). Allocate funding commensurate with disease burden for Biomedical Research into ME
2). Dangerous practices of GET and CBT to be removed immediately from NICE guidelines
3). ME to be taught in Medical Schools and training colleges including Acute & Community care
4). Appointment of trained ME specialists/consultants
5). All General Practitioners and Consultants to be informed
6). Treatment
What The UK Minister For Health & CARE Needs To Know
What else does the UK Minister for Health & CARE not know about Myalgic Encephalomyelitis?
That for 250,000 UK ME patients there is:
NO CARE
NO Appropriate Guidelines/ Policy
NO Teaching NO Knowledge
NO Doctor NO Consultant
NO Research NO Treatment
(ME is not taught in Medical Schools or Training Colleges)
WHAT ME PATIENTS NEED
6 POINT PLAN:
1). Allocate funding commensurate with disease burden for Biomedical Research into ME
2). Dangerous practices of GET and CBT to be removed immediately from NICE guidelines
3). ME to be taught in Medical Schools and training colleges including Acute & Community care
4). Appointment of trained ME specialists/consultants
5). All General Practitioners and Consultants to be informed
6). Treatment
Grievous Bodily Harms
“Grievous Bodily Harms”
(One of the many reasons why I’m an advocate for raising ME-Awareness)
Imagine this if you can/will:
You receive a letter from an official government body accusing you of an ‘offence’, purportedly committed in 1979 (38 years ago).
Your only defence – you were unaware that your action was an ‘offence’. (Ignorance is no defence in law)
Your understanding – at the time of the event it was not an ‘offence’ and probably is not today.
Notwithstanding, your livelihood and your reputation are at stake.
Despite suffering from cognitive impairments and multiple physical impairments, you have been immersed in assembling and presenting evidence to support your defence every day, for the past 5 months.
You cannot afford to pay for the services of a professional solicitor, lawyer or barrister to help you with this.
Throughout the case, your testimony has been disregarded variously as ‘hearsay’, ‘anecdotal’ and unproven without witnesses.
Any evidence which you have been able to provide, via your 5 witnesses, has not been believed and has been disregarded. This is despite having been told that their testimonies, specifically, are “VERY IMPORTANT”.
Even evidence previously generated by the system itself is also disregarded as too historical and not contemporary enough.
Finally, it is stated that there is “too much contradictory information from different sources to provide a robust defence and one that will accurately reflect the plaintiff’s position.”
Eventually, a person with some wisdom and experience in such cases advises you to seek a professional witness who could assist in your defence and who could provide written, formal, supporting evidence.
By then the judicial process has progressed and you are forced to undergo cross-examination.
Your requests for a paper-based review of your case are flatly refused.
As you are totally bedbound and only intermittently verbal, the cross-examination is to take place in your bedroom.
The judicial process has also been chaotic, unjust and incorrect and your health has further severely deteriorated.
At this point, instead of being declared unfit for trial, you are coerced into answering your case, as the only way for a decision to be reached (knowing that this will be harmful to your health and having informed the clerks of this).
One Sunday, in 2017, over 5 months since the onset of the prosecution, you are due to be questioned “Between 3–5 PM”.
At 7:24 AM you lie down to sleep for the “night” (suffering from sleep-onset delay, which has now become sleep-reversal. This fact is disregarded by the judicial process).
At 11:00 AM, after 3.5 hours’ sleep, you are woken as your night-time Carer leaves and your Senior Carer arrives to take over your care and, later, to give their testimony.
At 2:20 PM, with only half of your care needs met, your Senior Carer finishes assisting you to eat (spoon-feeding and assistance with drinks).
At 2:30 PM, your professional witness is due to arrive and another, second PA, arrives to support you with your physical care-needs, during and after the cross-examination, as your Senior Carer will be giving evidence.
By 2:46 PM, your professional witness has still not arrived and an urgent call is made.
Due to a miscommunication, the professional had thought that their services were not required. All haste is made for them to get to your home in time to give their evidence.
At 2:50 PM, you brief your Senior Carer on the running order of the day.
At 3:00 PM, the prosecutor is due to arrive.
At 3:05 PM, the professional witness arrives and hurriedly appraises the brief and the background to your case.
At 3:15 PM, As usual after eating, and worsened by the day’s exertions so far, you are overwhelmed with physical symptoms.
You are assisted to lie down.
The room is silent, dark and your eyes are covered.
You are experiencing a very severe adrenaline surge, tachycardia, palpitations, burning in the legs and face, neck pain, full-body pain, dehydration and sweats.
You are no longer able to speak and can only answer closed questions, asked by your Carer about your care needs, with a thumbs-up, “Yes”, or a wag of the index finger, “No”.
At 3:20 PM, the prosecution official arrives and is shown into the Carers’ bedroom (the only other available room you have).
At 3:27 PM, the official enters your bedroom and apologises for their visit. They express that it should have been “an open and shut case” and that they feel there should be no case to answer anyway.
Also, that they will hope to establish that you should not have to go through this again.
They will, nonetheless, need to hear the evidence from your 2 witnesses and ask if you are okay with this. You respond with hand signals. You are asked again, and manage to reply: “Yes”, and to thank them for coming. They leave the room and spend one hour recording the 2 witness testimonies.
Due to orthostatic intolerance You were only able to complete half of your nutritional needs before the 3:00 PM deadline. Although you suffer from hypoglycaemia, you have had to go without food for more than 2 hours beyond your safe limit, until the whole process of evidence-gathering is completed and the official has left.
OUTCOME:
At 1:15 PM on a Saturday, in 2017, three weeks later, you receive the verdict by post.
You are exonerated.
Your innocence is pronounced for an “ongoing period” (10 years).
However, you are obviously thought of as a potential recidivist as your name is placed on some kind of offenders’ register, whereby your case can be reviewed at any time, “should your circumstances change”.
Even so, you/I’m nothing less than gleeful and highly relieved.
At 4:15 PM, the room starts to tilt and to swirl, violently.
I experience an acute onset of severe vertigo, accompanied by heat surges, icy cold skin, and bouts of diarrhoea & vomiting (of some blood), after which I pass out whilst still propped against my pillows. I open my eyes after an hour and pass out again for a further half hour.
Today, January 2018 :
I am still in PEM/PENE (post-exertional neuroimmune exhaustion).
I don’t have relapses and remissions, just deteriorations from which I do not recover.
Oh, and you’re probably wondering – what was my supposed ‘crime’?
In November 1979, I became seriously ill.
In the late 1970s, and onwards, this was not considered to be an offence by the general population, nor the UK government.
By 1991, however, there began a never-ending series of denials of my condition, scrutiny and accountability, reviews, appeals and tribunals, all of which I have won, and my benefits and rights have been reinstated every time.
And what triggered this latest, farcical onslaught of harassment?
I was “invited by the DWP (Department of Work and Pensions) to transfer my ‘lifetime’ award of DLA (Disability Living Allowance) to PIP (Personal Independence Payment).”
The treatment that I have been subjected to has been that which may be meted out to a criminal offender.
The harassment of a person suffering from severe, chronic and deteriorating conditions has been brutal, and I would hope that, within the criminal justice system, there are protections in place against such ill-treatment of accused persons.
And… what… an… enormous… waste… of… public… funds…!
The cost to my health of this, and the past 29 years of persecutions, however, has been catastrophic.
This experience will not be easily forgotten.
And, by me and my body, not forgiven.
A criminal offence did, in fact take place:
A disability hate crime.
Prolonged institutional harassment and discrimination
by dint of a person’s disabilities and illnesses.
Ignorantia juris non excusat
Ignorance of my condition is no defence either.
PHYSICAL LOSSES/ DETERIORATIONS SINCE PIP PROCESS:
Barely able to be upright long enough to eat
Can’t move in the bed for the repositioning of pressure care fleeces
Can’t ‘dip’ head forward for placement of headsupport pillow
Extreme upperbody pain
Can’t reach far enough for toilet items
Can’t look down without disabling pain in the eyes
Motion sickness and nausea
Overwhelming brain-fog
Episodes of weeping
Anxiety
Today: still a WARRIOR.
Definitions:
Persecution pəːsɪˈkjuːʃn
Noun:
persecution; plural noun: persecutions
hostility and ill-treatment, especially because of race or political or religious beliefs; oppression.
synonyms: oppression, victimization, maltreatment, ill-treatment, mistreatment, abuse, ill usage, discrimination, tyranny, tyrannization, punishment, torment, torture; pogrom;
informal witch hunt;
informal red-baiting
harassment, hounding, harrying, badgering, teasing, bullying, molestation
costly ˈkɒs(t)li
adjective
costing a lot; expensive.
“major problems requiring costly repairs”
synonyms: expensive, dear, high-cost, high-priced, highly priced, big-budget, overpriced, exorbitant, extortionate, immoderate, extravagant; causing suffering, loss, or disadvantage.
“the government’s biggest and most costly mistake”
synonyms: catastrophic, ruinous, disastrous, calamitous, cataclysmic, devastating, crippling, crushing, fatal, lethal, damaging, harmful, injurious, deleterious, woeful, grievous, lamentable, dire, awful, terrible, unfortunate; literary: direful
Condition Of The Working Class In England (Adapted)
Anita Roddam edited this passage from Friedrich Engels:
“When one individual inflicts bodily injury upon another such that death results, we call the deed manslaughter; when the assailant knew in advance that the injury would be fatal, we call his deed murder.
But when the medical profession/psychiatrists place hundreds of patients in such a position that they inevitably meet a too early and an unnatural death, one which is quite as much a death by violence as that by the sword or bullet;
when it deprives thousands of the necessaries of life, places them under conditions in which they cannot live – forces them, through the strong arm of the law, to remain in such conditions until that death ensues which is the inevitable consequence – knows that these thousands of victims must perish, and yet permits these conditions to remain, its deed is murder just as surely as the deed of the single individual;
disguised, malicious murder, murder against which none can defend himself, which does not seem what it is, because no man sees the murderer, because the death of the victim seems a natural one, since the offence is more one of omission than of commission. But murder it remains.
I have now to prove that the medical profession/psychiatry in England daily and hourly commits what the working-men’s organs, with perfect correctness, characterise as social murder, that it has placed the patients under conditions in which they can neither retain health nor live long;
that it undermines the vital force of these patients gradually, little by little, and so hurries them to the grave before their time.
I have further to prove that the medical and psychiatric profession knows how injurious such conditions are to the health and the life of the patients, and yet does nothing to improve these conditions.
That it knows the consequences of its deeds; that its act is, therefore, not mere manslaughter, but murder, I shall have proved, when I cite official documents, reports of Parliament and of the Government, in substantiation of my charge. . .
. . . So far has it gone in England; and the general public reads these things every day in the newspapers and takes no further trouble in the matter. But it cannot complain if, after the official and non-official testimony here cited which must be known to it, I broadly accuse it of social murder.
Let the medical & psychiatric profession see to it that these frightful conditions are ameliorated, or let it surrender the administration of the common interests to expert-patient groups.
To the latter course it is by no means inclined; for the former task, so long as it remains the “caring professions” crippled by caring-professional prejudice, it has not the needed power.
For if, at last, after hundreds of thousands of victims have perished, it manifests some little anxiety for the future, passing a “Myalgic Encephalomyelitis Strategy”, under which the most unscrupulous lack of research, treatment and management is to be, at least in some slight degree, funded;
if it points with pride to measures which, far from attacking the root of the evil, do not by any means meet the demands of the commonest standard of medical care, it cannot thus vindicate itself from the accusation.
The English medical and psychiatric profession has but one choice, either to continue its rule under the unanswerable charge of murder and in spite of this charge, or to abdicate in favour of equity of medical care for people living with Myalgic Encephalomyelitis. Hitherto it has chosen the former course.”
Adapted from ‘Condition of the Working Class in England’,
F. Engels (1845)
Yes, EIGHTEEN forty-five!
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