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Disability, Discrimination, Human Rights

10th December - World Human Rights Day.

Like many grand ideas Human Rights Day has a noble purpose.

"The date was chosen to honor the United Nations General Assembly's adoption and proclamation, on 10 December 1948, of the Universal Declaration of Human Rights (UDHR), the first global enunciation of human rights and one of the first major achievements of the new United Nations." - source Wikipedia

Human rights extend to patients as well - to how patients should be treated, free of coercion, free of stigma and free to avoid being affected by harmful ideologies that are framed in government policies.

Yet despite the profound messages and campaigns the basic rights to healthcare of ME patients have often been infringed and discarded.
Lip-service only has been paid to the world's' quangos such as WHO and UN by governments and establishment organisations.

For ME there has never been any follow up on the implementation.
One sees examples of that even today.

Where was the UN when poor Karina Hansen was incarcerated in Denmark? [11]

Who covered the human rights of Sophia Mirza when she was forcibly sectioned? [12]

Where have the Governments, Departments of Health, Chief Medical Officers, National Institutes of Clinical Care and Excellence been in protecting human rights of patients? Who have they been serving?

ME was not alone in being an easy target for the Department of Work and Pensions (DWP) to unleash the government of the day's draconian and ideologically-driven policy assaults on disabled people.
Yet no other disease has had funding given to a research team, by the UK department responsible for welfare benefits, to prove that simplistic therapies could be used to make patients better - despite lacking any evidence base that stands up to proper scientific scrutiny.

In the UK the flawed PACE Trial [1] had funding from the DWP included in the £5 million that was thrown away to attempt to prove that Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) were beneficial for “treating” ME.

It was due, predominantly, to the work of patients that the PACE trial was decimated and found to be totally unusable - not due to any human rights organisation.

ME patients know well what it feels like to be at the sharp end of government departments that are meant to provide necessary welfare benefits but who so often coerce vulnerable and sick people into a minimalistic view of what they are entitled to. No international day protects them.
In UK the current benefits systems may mean that ME patients are likely to be judged by a third-party subcontractor that is totally clueless when it comes to knowing anything about the disease or its effects.

Of course, the DWP keeps making the point that they judge on disability not on a condition.
Yet how can a patient be judged fairly when the person judging them has no idea of the illness and how it affects the person attending a benefits review, either at the time of the meeting or days after the interview?

In some sense the Covid-19 pandemic and the necessity to hold remote meetings is a benefit that the DWP surely did not intend to offer and we well remember the difficulties that patients had when wishing to record these .assessments

Corporate parasites that are subcontracted to do the government's deeds presumably do not have to care about the effects on patients – they just carry out their instructions, and collect their rewards.
Perhaps the DWP (which is effectively the government of the day and has been the Conservative government for over a decade) and the ministers who decide DWP policies feel cleaner, less soiled this way. Yet they continually forget that they are temp employees - servants of the public.

Some while ago the DWP were actually found to have a target of 80% to refuse mandatory reconsideration requests as a Key Performance indicator.[2]

Both government contractors used by the DWP have previously been found to have bungled disability tests. [3]

IiMER were long ago told by an ex-member of the DWP fraud team that the actual fraudulent element from benefits was less than 3% and the official government figures for fraud now were far less [4].

The Press Association revealed in 2017 that Atos and Capita were set to be paid more than £700 million for their five-year contracts [5]

In the current climate where the Johnson government is handing out enormous sums of money to inexperienced subcontractors who are firends of the Conservative party, without scrutiny, that may now seem insignificant.
Are these external profit centres really required, especially when so many appeals against denial of benefits are often eventually won? And what of the effect on society?

The whole benefits system for disabled people – including ME patients – has been in disarray and produces an anxiety-ridden exercise for any ME patient that may further exacerbate their condition. Universal Credit roll-out has turned into a exercise in incompetence.

And some charities cannot complain as they have taken money from the government and have been under contract not to criticise [6].

The adage may be appropriate - Human rights - but not if it means paying out money or losing influence

In an article in 2019 [7] “Britain’s most senior tribunal judge says most of the benefits cases that reach court are based on bad decisions where the Department for Work and Pensions has no case at all.
Sir Ernest Ryder, senior president of tribunals, also said the quality of evidence provided by the DWP is so poor it would be “wholly inadmissible” in any other court.”

And the effects were expertly captured by this tweet from one doctor [8] -

Professor Tom Shakespeare at University of East Anglia has researched and published work on the biophysical explanation for disabilities and how benefit awards have arisen from the Waddell-Aylward model.

In his preface to the book Science, Politics,.......and ME, by Dr Ian Gibson and Elaine Sherriffs, [9] Professor Shakespeare wrote the following –

“Rather than judging whether a person has a practical chance of being able to find a job they can do in the actual labour market, the Work Capability Assessment investigates whether the person has the ability, in theory, to do any form of work at all, thus tightening the eligibility criteria substantially and making it more difficult to qualify for Employment Support Allowance.”

Another change has been introduced, as he says:

“A second change is that instead of using a person’s regular GP, who knows them and their difficulties, an ‘independent assessor’ is used, who does not necessarily understand how illness or impairment impacts their life.”

This can result again in the denial of benefits..."

The UK welfare system's' treatment of poor people (and that includes disabled people) in recent years has drawn attention from unlikely sources.

Philip Alston, "the UN’s rapporteur on extreme poverty and human rights, warned that poverty in the UK is a “political choice” and that compassion and concern had been “outsourced” in favour of tax cuts for the rich." [10].

And is not the misinformation and inappropriate treatment of a disease not an affront to "the inalienable rights which everyone is entitled to as a human being - regardless of race, colour, religion, sex, language, political or other opinion, national or social origin, property, birth or other status"?

All of these things overlap when we discuss ME – all interplay – and one can imagine it is all part of a grand establishment strategy.

The benefits scandal that denies disabled people what they need and deserve by using non-medical subcontractors to assess people;
where targets are set to deny benefits and make patients undergo unnecessary duress to overcome a pre-conceived outcome for their disability assessment;
where the DWP fund research aimed solely at proving ME can be “fixed” by simplistic approaches that fund careers and assist insurance companies;
where the official flawed guidelines are rigidly decided by an institute that claims to be responsible for clinical excellence yet seems to ignore patients' experiences and aligns more with the BPS lobby;
where insurance companies deny benefits to patients if they choose not to try the recommendations in the flawed official guidelines that propose harmful therapies such as CBT and GET as treatments;
and the possible payment of government funds to charities to avoid criticism by buying their

And we have not touched upon research funding awarded to lines of research that will never help the patients.


Played out using ME patients as the pawns.

From the charity's' response to the 2007 NICE Draft guidelines we reused the comments on human rights provided by R. Mitchell and V.Mitchell. [13]

Private Health Insurers cannot force an M.E. client to undergo unwanted treatment before making a payment, unless those treatments are specified in the contract

Unless the contract of a company states clearly that M.E. clients must undergo CBT and/or graded exercise before a payment is made, the company could well be in breach of contract. Also, every individual has freedom to express views as stated by The Human Rights Act 1998. If an insurance company ignores a client’s reasons for refusing CBT and/or graded exercise, a client could claim their ‘freedom of expression’ has been violated [i]. [i]

The Human Rights Act 1998, European Convention for the Protection of Human Rights and Fundamental Freedoms, Section 1, Article 10, no.1

The guidelines should have had a significant increase in evidence-based assessment and treatments beyond the psychosocial model and CBT/GET treatments before it can be accepted as an independent, expert guideline for the treatment of ME/CFS (see Human Rights later).

In 2007 the recommendation from NICE to use psychological therapies for treating ME contravened the human rights of patients.
It was stated that by ignoring the serious issues with regard to CBT and GET the NICE guidelines would violate the right of clinicians and patients to the highest, safest standards of medical practice and care, amounting to a violation of their Human Rights, apart from major concerns about the efficacy of use of CBT or about the danger in the use of GET.
There was no regulatory framework governing the development and use of CBT and GET thus leaving ME patients vulnerable to exploitation and abuse at the hands of the vagaries of power, politics and prejudice (which has been proven correct).

In respect of informed consent for using these therapies the issue did not arise as there simply cannot be informed consent since there are important ethical, safety and regulatory questions arising from these treatments, to be addressed.
It was hard to envisage any Independent authority clearing a drug for Human testing or use without ethical and safety issues, like those surrounding Psychological Therapy, being resolved. By ignoring these serious issues with regard to Psychological Therapy the NICE guidelines violated the right of clinicians and patients to the highest, safest standards of Medical practice and care, amounting to a violation of their Human Rights.
This was a Human Rights issue.

This applies today also when one sees NICE retaining these as recommendations for treatment for ME despite lengthy correspondence between Invest in ME Research and the director of NICE guidelines [15], in which it is clearly shown that these therapies are unfir for ME.

Human Rights Day may seem to be something concerning international aspects and big politics.

However, as electorates choose what type of society they prefer for the future the human rights of disabled citizens ought to be just as noteworthy, as Eleanor Roosevelt alluded -

“Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. … Unless these rights have meaning there, they have little meaning anywhere. Without concerned citizen action to uphold them close to home, we shall look in vain for progress in the larger world.” – Eleanor Roosevelt

Further Reading:

The European ME Alliance (EMEA) has produced a short fact sheet on UN Convention on the Rights of Persons with Disabilities - thanks to the work of EMEA Iceland and the EMEA Working Group click here

  1. PACE Trial

  2. Disability Rights UK

  3. Atos and Capita apologise to disabled people over fitness to work tests

  4. Fraud and Error in the Benefit System

  5. Atos and Capita miss targets for 'acceptable' £700 million PIP assessments

  6. How charities are corrupted by Whitehall

  7. Senior Judge Has Suggested Charging The Government For Every "No-Brainer" Benefits Case It Loses In Court

  8. Doctor's Tweet

  9. Science, Politics,.......and ME

  10. UK's welfare system is cruel and misogynistic

  11. Karina Hansen

  12. The Story of Sophia and M.E

  13. CBT, GET And Human Rights

  14. Benefits and Work

  15. Letters to Professor Mark Baker at NICE

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