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Disability, Discrimination, Human Rights

ME is not alone in being an easy target for the DWP to unleash its draconian and ideologically-driven policy assault on disabled people.

Yet no other disease has had funding from the DWP given to a research team to prove that simplistic therapies could be used to make patients better – or at least avoid them using funds from the public purse.

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

The tale is rich in irony as it was due, predominantly, to the work of patients that the PACE trial was decimated and found to be totally unusable.

ME patients know well what it feels like to be at the sharp end of DWP coercion.

The current benefits system means that ME patients are likely to be judged by a third-party subcontractor who is totally clueless when it comes to knowing anything about the disease or its effects.

Of course, the DWP keep making the point that they judge on disability not on 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 the benefits review, either then or days after the interview?

The corporate parasites that DWP subcontracts to do the deeds presumably do not have to care about the effects on patients – they just carry out their instructions. Perhaps the DWP (which is effectively the government of the day) and the ministers who decide DWP policies feel cleaner, less soiled this way yet continually forget that they are servants of the public.

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 have previously been found to have bungled disability tests. [3]

Invest in ME Research 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 offical government figures for fraud now are 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]
One is left to wonder if these external profit centres are really required, especially when so many appeals against denial of benefits are eventually won. What of the effect on society?

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

And some charities cannot complain as they take money from the government and are under contract not to crticise [6].

In a recent article [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 a 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 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].

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

The benefits scandal that denies disabled people what they 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 silence.

Played out using ME patients as the pawns.
Quod erat demonstrandum

The article [7] above ironically comes the day after World Human Rights Day

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

Yet despite their profound messages and campaigns the basic rights to health of ME patients are continually infringed and discarded. Lip-service only is paid to the world quangos such as WHO and UN by governments and establishment organisations.

For ME there is never any follow up on the implementation.

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

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

Where have the Governments, DoH, CMO, NICE been in protecting human rights? Who are they serving?

Can one think of another case where it is so detrimental to patients when one doctrine is forcibly imposed on vulnerable people by establishment forces against common sense and when there is no evidence base that stands up to proper scientific scrutiny?

From the charity's' response to the 2007 NICE Draft guidelines we have 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 being told they are harmful.

Further Reading:

  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 Hanson

  12. The Story of Sophia and M.E

  13. CBT, GET And Human Rights

  14. Benefits and Work

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