Author: Kitty S Jones

I’m a political activist with a strong interest in human rights. I’m also a strongly principled socialist. Much of my campaign work is in support of people with disability. I am also disabled: I have an autoimmune illness called lupus, with a sometimes life-threatening complication – a bleeding disorder called thrombocytopenia. Sometimes I long to go back to being the person I was before 2010. The Coalition claimed that the last government left a “mess”, but I remember being very well-sheltered from the consequences of the global banking crisis by the last government – enough to flourish and be myself. Now many of us are finding that our potential as human beings is being damaged and stifled because we are essentially focused on a struggle to survive, at a time of austerity cuts and welfare “reforms”. Maslow was right about basic needs and motivation: it’s impossible to achieve and fulfil our potential if we cannot meet our most fundamental survival needs adequately. What kind of government inflicts a framework of punishment via its policies on disadvantaged citizens? This is a government that tells us with a straight face that taking income from poor people will "incentivise" and "help" them into work. I have yet to hear of a case when a poor person was relieved of their poverty by being made even more poor. The Tories like hierarchical ranking in terms status and human worth. They like to decide who is “deserving” and “undeserving” of political consideration and inclusion. They like to impose an artificial framework of previously debunked Social Darwinism: a Tory rhetoric of division, where some people matter more than others. How do we, as conscientious campaigners, help the wider public see that there are no divisions based on some moral measurement, or character-type: there are simply people struggling and suffering in poverty, who are being dehumanised by a callous, vindictive Tory government that believes, and always has, that the only token of our human worth is wealth? Governments and all parties on the right have a terrible tradition of scapegoating those least able to fight back, blaming the powerless for all of the shortcomings of right-wing policies. The media have been complicit in this process, making “others” responsible for the consequences of Tory-led policies, yet these cruelly dehumanised social groups are the targeted casualties of those policies. I set up, and administrate support groups for ill and disabled people, those going through the disability benefits process, and provide support for many people being adversely affected by the terrible, cruel and distressing consequences of the Governments’ draconian “reforms”. In such bleak times, we tend to find that the only thing we really have of value is each other. It’s always worth remembering that none of us are alone. I don’t write because I enjoy it: most of the topics I post are depressing to research, and there’s an element of constantly having to face and reflect the relentless worst of current socio-political events. Nor do I get paid for articles and I’m not remotely famous. I’m an ordinary, struggling disabled person. But I am accurate, insightful and reflective, I can research and I can analyse. I write because I feel I must. To reflect what is happening, and to try and raise public awareness of the impact of Tory policies, especially on the most vulnerable and poorest citizens. Because we need this to change. All of us, regardless of whether or not you are currently affected by cuts, because the persecution and harm currently being inflicted on others taints us all as a society. I feel that the mainstream media has become increasingly unreliable over the past five years, reflecting a triumph for the dominant narrative of ultra social conservatism and neoliberalism. We certainly need to challenge this and re-frame the presented debates, too. The media tend to set the agenda and establish priorities, which often divert us from much more pressing social issues. Independent bloggers have a role as witnesses; recording events and experiences, gathering evidence, insights and truths that are accessible to as many people and organisations as possible. We have an undemocratic media and a government that reflect the interests of a minority – the wealthy and powerful 1%. We must constantly challenge that. Authoritarian Governments arise and flourish when a population disengages from political processes, and becomes passive, conformist and alienated from fundamental decision-making. I’m not a writer that aims for being popular or one that seeks agreement from an audience. But I do hope that my work finds resonance with people reading it. I’ve been labelled “controversial” on more than one occasion, and a “scaremonger.” But regardless of agreement, if any of my work inspires critical thinking, and invites reasoned debate, well, that’s good enough for me. “To remain silent and indifferent is the greatest sin of all” – Elie Wiesel I write to raise awareness, share information and to inspire and promote positive change where I can. I’ve never been able to be indifferent. We need to unite in the face of a government that is purposefully sowing seeds of division. Every human life has equal worth. We all deserve dignity and democratic inclusion. If we want to see positive social change, we also have to be the change we want to see. That means treating each other with equal respect and moving out of the Tory framework of ranks, counts and social taxonomy. We have to rebuild solidarity in the face of deliberate political attempts to undermine it. Divide and rule was always a Tory strategy. We need to fight back. This is an authoritarian government that is hell-bent on destroying all of the gains of our post-war settlement: dismantling the institutions, public services, civil rights and eroding the democratic norms that made the UK a developed, civilised and civilising country. Like many others, I do what I can, when I can, and in my own way. This blog is one way of reaching people. Please help me to reach more by sharing posts. Thanks. Kitty, 2012

The government’s shameful lack of progress on disability rights in the UK – new report update and submission to the UNCRPD Committee

October 9, 2018October 14, 2018 · 7 Comments ·

Despite equality being enshrined in protective legislation, disabled people in the UK are facing more barriers, exclusion and falling further behind as they try to thrive in an environment characterised still by oppressive obstruction, misunderstanding and austerity measures that hit home repeatedly, disproportionately and cumulatively.

Disabled people are more likely to be in fuel and food poverty, to have problems finding housing and to be affected by the bedroom tax.

We are underrepresented in politics, find it harder to access support and transport, experience significant health inequalities, and are less likely to be in employment. There is a significant wage gap between disabled and nondisabled people, too.

It is a shameful that in our society millions of disabled people are still not being treated as equal citizens and are denied the everyday rights that others take for granted.

In August 2017, the United Nations Committee on the Rights of Persons with Disabilities (CRPD Committee) published a report that examined the extent to which the UK and devolved governments are in compliance with the Convention on the Rights of Persons with Disabilities (UN CRPD).

The CRPD Committee’s main concerns and recommendations to the UK governments were set out in its ‘concluding observations’ in their report, which summarised that the UK government had “gravely and systematically violated the human rights of disabled persons.”

The CRPD Committee requested further information from the UK one year on from the examination of the steps taken to implement its recommendations on: independent living; work and employment; and an adequate standard of living and social protection; as well as some related issues covered in the report on the CRPD Committee’s 2016 inquiry.

A new report and submission to the UN CRPD – UK Independent Mechanism update report to the UN Committee on the Rights of Persons with Disabilities (published by the Equality and Human Rights Commission (EHRC) in October 2018) – provides an assessment via the UK Independent Mechanism (UKIM) on the steps taken (or not taken) by the UK governments to implement the UN’s recommendations since August 2017.

The EHRC report says that the UK has taken “only very limited steps to address the concerns and recommendations of the CRPD Committee”. UKIM expressed “disappointment that the UK governments have not seized on this important opportunity to reflect on and progress disability rights.” The report authors are concerned by the lack of a prompt response to the CRPD Committee’s recommendations.

In particular, 12 months on, there is no comprehensive UK-wide strategy demonstrating how the UK will implement the CRPD Committee’s recommendations.

There has also been “continued reluctance” from the UK Government to accept the conclusions of the CRPD Committee’s inquiry report on the impact of the UK Government’s policies on the rights of disabled people.

In May this year, the UK Government announced it was establishing a new Inter-Ministerial Group on Disability and Society. However, it is particularly worrying that the published terms of reference for the inter-ministerial group do not refer to the CRPD or the CRPD Committee’s recommendations. Furthermore, they do not specifically provide for the effective democratic participation and involvement of disabled people’s organisations or disabled people; and also it is not clear if, and to what extent, devolved administrations are involved in the group.

The report says that the picture emerging from the most recent evidence about disabled people’s lives remains deeply concerning. Disabled people across the UK continue to face serious regression of many of their rights.

Social protections have been reduced and disabled people and their families continue to be among of the hardest hit. More and more disabled people are finding it difficult to live independently and to be included, and participate, in their communities on an equal basis.

There are also fears that the significant uncertainty in relation to Brexit will lead to a further deterioration of disabled people’s rights.

The lack of a devolved government in Northern Ireland is also a specific concern to that jurisdiction, because it is significantly inhibiting the relevant departments from taking the required steps. The UKIM report reiterates its view that the grave and systematic violations identified by the CRPD Committee need to be addressed and that the overall approach of the UK Government towards social security protection requires an overhaul, guided by human rights standards and principles, to ensure disabled people’s rights are respected, protected and fulfilled.

Serious concerns about the impact of Brexit on disabled people’s human rights

A serious concern raised in the report – one which I have also raised previously – is that following the European Union (EU) referendum in June 2016, there continues to be significant uncertainty regarding the future applicability of existing human rights protections in the UK that derive from EU law. The EU Charter of Fundamental Rights was excluded from the European Union (Withdrawal) Act 2018, meaning that from ‘exit day’ it will no longer apply in domestic law. As a result, domestic protections are now more vulnerable to repeal.

The Charter goes further than the non-discrimination provisions in the Equality Act 2010 or the European Convention on Human Rights (ECHR). Article 26 of the Charter, in particular, is a useful interpretive tool to support disabled people’s right to independence and integration and participation in the community.

The European Union (Withdrawal) Act 2018 also leaves human rights protections at risk of being changed through the use of wide-ranging delegated powers. This means that changes to fundamental rights currently protected by EU law can be made by ministers through secondary legislation (statutory instruments) without being subject to full parliamentary scrutiny – which is something the Conservatives have done on a habitual basis.

The EU is itself a party to the CRPD. Under EU law, international treaties to which the EU is party have a different status than they do under UK law. For example, EU law (unlike UK law) must be interpreted consistently with the CRPD. To ensure there is no regression, and that disabled people in the UK benefit from future progress driven by the CRPD, the UK Government should ensure these protections are incorporated into UK law, for example by giving enhanced status to the CRPD.

The report authors also noted : “In July 2018, the Secretary of State for International Development hosted the Global Disability Summit, with representatives from disabled people’s organisations, civil society, governments, and the private sector. The UK Government presented its new Charter for Change, which sets out 10 commitments to achieve full inclusion of disabled people.

“Although the UK Government has repeatedly reiterated its commitment to making the CRPD a reality for all disabled people in the UK, and has claimed to be a global leader in disability rights, it has not incorporated CRPD rights into domestic law, or taken steps to implement disabled people’s rights systematically across the UK.”

It was noted in the report that the Scottish Government has also made no formal response to the CRPD Committee’s concluding observations falling within its devolved competence. However, the Scottish Government has set up an expert advisory group to make recommendations on ‘how Scotland can continue to lead by example in human rights, including economic, social, cultural and environmental rights’. The group will make recommendations to the First Minister before the end of December 2018.

It was also noted that the collapse of the devolved government (Northern Ireland Assembly and Northern Ireland Executive) continues. Consequently, there has been no formal response to the CRPD Committee’s concluding observations falling within devolved competence. In the absence of ministers to provide approval, the relevant devolved departments have reported difficulties in obtaining the authority and resources to action the steps required to implement the CRPD Committee’s recommendations.

Summary of concerns related to disabled peoples’ right to live independently

CRPD Committee concluding observations in 2017, paragraph 45: ‘The Committee recommends that the State party … : recognize the right to living independently and being included in the community as a subjective right, recognize the enforceability of all its elements, and adopt rights-based policies, regulations and guidelines to ensure implementation; conduct periodic assessments in close consultation with organizations of persons with disabilities to address and prevent the negative effects of policy reforms through sufficiently funded and appropriate strategies in the area of social support and living independently; … [and] allocate sufficient resources to ensure that support services are available, accessible, affordable, acceptable, adaptable and are sensitive to different living conditions for all persons with disabilities in urban and rural areas.”

Findings

The right to live independently in the community is not recognised as a statutory right in the UK and there do not appear to be any plans to change this. The increasing demand, along with reduced funding, for social care, particularly adult social care, may be leading to a regression in disabled people’s article 19 rights to live independently in the community. The shortage of accessible and adaptable homes, and long delays in making existing homes accessible, also has a detrimental effect on the right to live independently.

There is evidence that social care, particularly adult social care, is at crisis point across the UK and there is a chronic shortage of accessible homes, which impacts negatively on disabled people’s right to live independently in the community. The right to live independently in the community is not recognised as a statutory right in the UK and there do not appear to be any plans to change this.

The increasing demand, along with reduced funding, for social care, particularly adult social care, may be leading to a regression in disabled people’s article 19 rights to live independently in the community. The shortage of accessible and adaptable homes, and long delays in making existing homes accessible, also has a detrimental effect on the right to live independently.

Spending for adult social care in England was budgeted to be 3% lower in 2017/18 than in 2009/10.21 As the population has grown over this period, this is equivalent to 9% lower per person, according to the Association of Directors of Adult Social Services (ADASS). This means ‘fewer older and disabled people with more complexcare and support needs getting less long-term care.

In March 2018, the EHRC started legal action against 13 clinical commissioning groups because the NHS Continuing Healthcare policies restricted funding and failed to account for individual circumstances. This may force disabled people into residential care when their preference is to remain at home. The EHRC is concerned that, in England, the closure of the Independent Living Fund and the devolution of this function to local authorities, without ring-fencing finance for this purpose, has resulted in a postcode lottery for support.

The EHRC’s inquiry into housing for disabled people across Great Britain (GB), published in May 2018, found new evidence that disabled people face a shortage of accessible and adaptable homes and long delays in making existing homes accessible. Disabled people are not getting the support they need to live independently as the provision of advice, support and advocacy is patchy, and people report that they have nowhere to turn when their housing is unsuitable.

The EHRC’s survey of local authorities found that just over a quarter (28%) of local authorities in GB set a percentage target for accessible housing.

Research by the Care Quality Commission (CQC) found that nearly two-thirds of placements in residential-based mental health rehabilitation services are ‘out ofarea’, and very lengthy.26 This means that individuals are usually placed far away both from home and from the local support services that should care for them once they have been discharged.

The CQC has also reported that some patients who are subject to the Mental Health Act (MHA) 1983 continue to experience care that does not fully protect their rights or ensure their wellbeing. For example, there have been no improvements in involving patients in developing their care plans, and in making sure their views are considered in care decisions.

Summary of concerns related to the right to an adequate standard of living and social protection (article 28)

CRPD Committee concluding observations in 2017, paragraph 59: ‘The Committee recommends that the State party … introduce, adopt and implement legislative frameworks to ensure that social protection policies and programmes across the State party secure income levels for all persons with disabilities and their families, by taking into account the additional costs relating to disability … ; carry out a cumulative impact assessment, based on disaggregated data, of the recent and forthcoming reforms of the social protection system for persons with disabilities, and in close collaboration with organizations of persons with disabilities define, implement and monitor measures to tackle retrogression in their standard of living and use the cumulative impact assessment as a basis for policy development across the State party; … [and] conduct a review of the conditionality and sanction regimes concerning the Employment and Support Allowance, and tackle the negative consequences on the mental health and situation of persons with disabilities.’

Findings

There have been a considerable number of research projects focusing on disabled people’s standard of living and social protection. The findings of this research show the disproportionate and significantly adverse effect of welfare reform on disabled people’s rights to independent living and to an adequate standard of living and social security.

However, the UK Government has failed to act on this evidence and to implement the CRPD Committee’s recommendations regarding these rights.

New evidence

Research by the Joseph Rowntree Foundation (JRF) found that 30% of people living in a household with a disabled person live in poverty, compared to 19% of those in households without a disabled person.

The Institute for Fiscal Studies (IFS) found that people aged 25–54 with a longstanding illness are 50% more likely to live in poverty and deprivation than those without.

However, the gap in living standards between those with a long-standing illness and those without is likely to be an underestimate, since illness and disability are also likely to lead to higher costs of living.

The National Audit Office (NAO) found that the Department for Work and Pensions (DWP) has not done enough to protect and support ‘vulnerable claimants’, who have experienced difficulties and hardship during the implementation of Universal Credit.

The UK Parliament Work and Pensions Select Committee found that, since 2013, 290,000 claimants of the Personal Independence Payment (PIP) and theEmployment and Support Allowance (ESA) only received the correct award after challenging the DWP’s initial decision.

New evidence suggests that benefit sanctions have had no tangible positive effects in moving disabled people closer to paid work and that the use of sanctions may have exacerbated many disabled people’s existing illnesses and impairments, especially for those with mental health conditions. The EHRC review of recent social security reforms also indicates that sanctions: do little to change claimant motivation; encourage hostility towards support services; and worsen relationships with job centre staff.

The Council of Europe’s Committee of Social Rights recently concluded that the UK does not conform with the right to social security under the European Social Charter because levels of statutory sick pay, minimum levels of ESA, and long-term incapacity and unemployment entitlements are lower than 40% of the median income, and ‘manifestly inadequate’.

The EHRC’s analysis of the tax and welfare reforms introduced between May 2010 and January 2018 revealed that their cumulative impact on disabled people by the 2021/22 tax year will be significantly regressive. This is particularly so for policy decisions taken in the 2015–17 Parliament (the impacts of which are, for the most part, still to come). The findings include:

 Households with at least one disabled adult and a disabled child will lose over
£6,500 a year (over 13% of their net income).

 Disabled lone parents with at least one disabled child will lose almost £10,000
of their annual net income.

 Adults with behavioural difficulties will lose around £2,350 a year.

 Adults with learning difficulties will lose around £1,750.

 Adults with mental health conditions will lose just over £1,799.

Early findings from an EHRC analysis of the cumulative impact of changes to public spending indicate that certain groups, including people who are the most severely disabled, are affected disproportionately by public spending cuts.

The combined analysis of the public spending changes and the EHRC’s earlier report on the impact of changes to tax and welfare reforms indicates that the losses in income for households where there is a higher disability score are even greater.

Recent research commissioned by the Local Government Association (LGA) found that around 900,000 disabled people will see their weekly income fall by at least £50 a week by 2020 due to the cumulative impact of welfare reform. Under Universal Credit the average household containing a disabled person will be worse off in 2020 by £51.47 per week.

In December 2017, the high court found that the rules brought in by the 2017 regulations that differentiate between physical and mental health issues in the award of the mobility component of PIP are unlawfully discriminatory against people with a mental health condition, in breach of the Human Rights Act 1998.

The EHRC intervened in this case and put forward its view that the rule infringed and was ‘fundamentally at odds with Article 19 CRPD’s guarantees’. The high court agreed. Subsequently, DWP announced that all 1.6 million people receiving PIP would have their claim reviewed, it would end unnecessary PIP reviews for people with the most severe health conditions, and that it is currently developing new guidance.

Concerns have been raised by disability rights organisations over the delay in implementing the judgment pending the publication of new PIP assessment guidance.

In June 2018, the high court found that the implementation arrangements of Universal Credit unlawfully discriminated against two severely disabled men who both saw their benefits dramatically reduced when they moved to another local authority area, and were therefore required to claim Universal Credit.

Before moving onto Universal Credit, both men were in receipt of the severe disability premium (SDP) and enhanced disability premium (EDP), which were aimed at meeting the additional care needs of severely disabled people living alone with no carer. The court found that the implementation arrangements were contrary to article 14 ECHR in conjunction with article 1, protocol 1. The EHRC intervened in this case, arguing that article 14 of the ECHR, read with the UN Convention on the Rights of Persons with Disabilities (UN CRPD), imposes positive obligations on the UK to address and remove the obstacles faced by disabled people in enjoying equal rights.

The DWP has subsequently committed to introducing changes that will ensure no severely disabled person in receipt of the SDP will be required to move onto Universal Credit until transitional protection is in place, and to compensate those who have lost out.

Summary of concerns related to the right to work and employment (article 27)

CRPD Committee concluding observations in 2017, paragraph 57: ‘The Committee recommends that the State party … develop and decide upon an effective employment policy for persons with disabilities aimed at ensuring decent work for all persons with disabilities, bearing in mind the State party’s target of 1 million jobs for persons with disabilities, and ensure equal pay for work of equal value, focusing especially on women with disabilities, persons with psychosocial and/or intellectual disabilities and persons with visual impairments, and monitor those developments; … [and] ensure that the legal and administrative requirements of the process to assess working capabilities, including the Work Capability Assessment, are in line with the human rights model of disability, that those who conduct the assessments are qualified and duly trained in that model, and that the assessments take into consideration work-related as well as other personal circumstances.’

Findings

In the last 12 months, further information has become available on the failure of the UK to safeguard disabled people’s right to work and employment. The UK and devolved governments have announced a number of commitments to address these failings and to implement the relevant CRPD Committee’s recommendations; these commitments are welcomed.

However, concerns are already emerging regarding barriers to their effective implementation, as set out below. These include limited eligibility, funding shortfalls and lack of measurable targets.

The UK Government has established the Inter-Ministerial Group on Disability and Society, with one of its key aims being to increase disability employment rates. But there are concerns about the practical operations of this group and the omission of a specific reference to the CRPD or the CRPD Committee’s recommendations in its terms of reference. In addition, the listed membership of the inter-ministerial group does not adequately reflect that the devolved governments also have responsibility for taking action to address the disability employment gap. Nor does the group include the participation of disabled people and allied organisations.

While the disability employment gap has narrowed slightly since 2015, disabled people are still less likely to be in employment than non-disabled people. Disabled people in the UK are paid less on average than non-disabled people.

A recent TUC report found that the disability pay gap (15%) was higher in 2016/17 than in 2013/14, 2014/15 or 2015/16. It found that, in 2017, the average hourly pay for disabled workers was £9.90, compared with £11.40 for non-disabled workers – resulting in a disability pay gap of £2,730 per year. The TUC also reports that disabled workers are more likely to work in lower-paid occupations than non-disabled workers. Across the UK, there is no requirement on public or private employers to publish information on disability pay gaps.

Summary of concerns related to prejudice and negative attitudes (articles 8 and 16)

CRPD Committee inquiry recommendations 2016, paragraph 114 (h): Take appropriate measures to combat any negative and discriminatory stereotypes or prejudice against persons with disabilities in public and the media, including the assertion that dependency on benefits is in itself a disincentive to seeking employment, implement broad mass media campaigns, in consultation with organizations representing persons with disabilities, particularly those affected by the welfare reform, to promote them as full rights holders, in accordance with the Convention; and adopt measures to address complaints of harassment and hate crime by persons with disabilities, promptly investigate those allegations, hold the perpetrators accountable and provide fair and appropriate compensation to victims.’

Findings

The extensive data available indicate that progress to date is insufficient and, therefore not in line with the CRPD Committee’s recommendations. Prejudice towards disabled people persists. This includes negative attitudes towards disabled people claiming social security benefits and negative assumptions about disabled people’s human value
and quality of life.

New evidence

In 2017, 75% of students in secondary schools and colleges with autism and Asperger’s syndrome, and 70% of those with a physical disability said they had been bullied compared with 50% of students with no disability.

Research examining prejudice faced by disabled people found that 32% of disabled people felt there was a lot of disability-related prejudice, but only 22% of nondisabled people thought this was the case. This indicates a gap between the reality of disabled people’s lives and the public’s perception. The study also found evidence that ‘paternalist’ attitudes about disabled people are still prevalent:

 75% of the study’s respondents thought disabled people need to be cared for some or most of the time.

 13% tended to ‘hardly ever’ or ‘never’ think of disabled people as the same as everyone else

In a related study of disabled people, national disability charity Scope found that:

 40% of all respondents indicated that they did not feel valued by society

 49% responded that they feel excluded from society because of their long-term impairment or health condition, and

 42% felt the UK is a good place for disabled people to live.

The police registered 5,558 disability-motivated hate crime cases in England and Wales in 2016/17. This is a 53% increase since 2015/16 (though this significant increase may be partly a reflection of improvements in reporting). Recent research suggests a significant drop-off between the number of cases recorded by the police and the number of prosecutions. Estimates from the Crime Survey for England and Wales indicate an average of 67,000 cases of disability hate crime per year. The UK Parliament Petitions Select Committee led an inquiry into the online abuse of disabled people, which reported in August 2018.

The Committee produced draft recommendations for consultation, including that: social media companies should be required to ensure their policies and processes are accessible to, and developed in partnership with, disabled people; and that the UK Government commit to introducing new legislation covering online communications by 2020, reflecting findings from the ongoing Law Commission review of the current legal framework.

UKIM is not aware of any actions to address the main concerns of the CRPD Committee and to combat any negative and discriminatory stereotypes or prejudice against disabled people among the public and in the media. In particular, there have been no steps taken to tackle the negative attitudes towards those claiming social security benefits, and, more broadly, to promote the human rights model of disability.

On the contrary, there are examples of government comments and negative role-modeling that have potentially reinforced negative attitudes and the stigma surrounding mental health and disability.

This includes the Chancellor of the Exchequer, Philip Hammond, stating before a committee of the UK Parliament: ‘It is almost certainly the case that by increasing participation in the workforce, including far higher levels of participation by marginal groups and very high levels of engagement in the workforce, for example of disabled people – something we should be extremely proud of – may have had an impact on overall productivity measurements.’

It’s evident that many people understood this statement as indicating that the increase in disabled people in employment is partly responsible for the UK’s decreasing productivity.

Concerns regarding Access to justice (articles 12 and 13)

CRPD Committee inquiry recommendations in 2016, paragraph 114 (f): ‘‘Ensure access to justice by providing appropriate legal advice and support,including through reasonable and procedural accommodation for persons with disabilities seeking redress and reparation for the alleged violation of their rights, as covered in the present report.’

Findings

Overall there has been little progress on the UK’s implementation of the relevant CRPD Committee recommendations. In the UK, education tribunals are not able to award financial compensation where there has been a finding of disability discrimination or harassment. Despite newly revised guidance, there is no formal system of support in court for people with mental health conditions and learning disabilities in place across the UK.

There are continuing barriers to accessing justice, for example in relation to social security cases. There has been a substantial decrease in the number of disabled people being granted legal aid in the wake of the legal aid reforms introduced by the Legal Aid, Sentencing and Punishment of Offenders Act 2012 (LASPO).

The removal of welfare benefits law from the scope of legal aid has exacerbated the impact of recent welfare reforms, which is likely to have affected disabled people disproportionately.

People entitled to disability benefits relied on legal aid to support appeals of incorrect decisions and to provide a valuable check on decision-making concerning eligibility for welfare benefits.

New evidence

Independent research suggests there is poor and inconsistent use of reasonable adjustments in the criminal justice system for defendants with mental health conditions and learning disabilities.

Particular concern has been raised about the underuse of defendant intermediaries to aid comprehension and participation during criminal justice proceedings.

Deaf people using an interpreter continue to be denied the opportunity to carry out jury service in courts. Although, since 1999, the UK Government has repeatedly indicated its commitment to address the issue in England and Wales, there have been no changes to date. The EHRC is providing legal assistance in a case involving a deaf man who was told he was not required for jury service after disclosing that he was deaf.

Concerns related to involving disabled people and their organisations (articles 4(3) and 33(3))

CRPD Committee inquiry recommendations 2016, paragraph 114 (g): ‘Actively consult and engage with persons with disabilities through their representative organizations and give due consideration to their views in the design, implementation, monitoring and evaluation of any legislation, policy or programme action related to the rights addressed in the present report.’

Findings

There is a continued lack of action from the UK and devolved governments on the CRPD Committee’s recommendations. This includes setting up systems that will ensure that disabled people and their organisations are involved in the design, implementation, and monitoring and evaluation of legislation, policy or programmes that affect their lives.

It remains unclear how the new Inter-Ministerial Group on Disability and Society will work with disabled people and their organisations, and UKIM, to promote and monitor implementation of UN CRPD. It is particularly concerning that the UN CRPD’s requirement to effectively involve disabled people and their organisations is not specifically reflected in the inter-ministerial group’s terms of reference. Nor do
the terms of reference refer to the CRPD or the CRPD committee’s recommendations.

The Office for Disability Issues (ODI) stated in its State Party report in September 2018 that it had increased its efforts to engage with disabled people and their organisations in recent months, including by creating a new role of stakeholder manager. However, this does not seem to have translated into a publicly available engagement plan or any concrete activities to date.

Dissemination of concluding observations and inquiry findings (article 36)

CRPD Committee concluding observations 2017, paragraph 77: ‘The Committee requests the State party to disseminate the present concluding observations widely, including to non-governmental organizations and organizations of persons with disabilities, and to persons with disabilities themselves and members of their families, in national and minority languages, including sign language, and in accessible formats, including Easy Read, and to make them available on the government website on human rights.’

Findings

There has been little progress regarding the UK and devolved governments’ dissemination of the CRPD Committee’s concluding observations and inquiry findings Dissemination of the CRPD Committee’s concerns and recommendations by the UK Government and efforst to raise awareness have been minimal.

Neither the concluding observations nor the inquiry report have been published on the UK Government’s website, only its own State Party reports. The CRPD Committee’s reports have also not been made available in accessible formats, including easy read, as requested by the CRPD Committee. The EHRC has published the concluding observations and reproduced them in accessible formats.

UKIM’s experience is that the UK governments tend to put more energy into reporting to, and examination by, the UN, and less into the follow-up of UN concluding observations. Therefore, one of UKIM’s continuing challenges is to develop and maintain momentum for implementation of UN human rights treaties, including the CRPD.

Recommendations

UKIM reiterates its recommendations made to the CRPD Committee during the examination process in August 2017. This list includes all recommendations relevant to the issues covered in this report.

Where necessary, these recommendations have been updated to reflect changes in the policy context and the emergence of new evidence.

The right to live independently in the community (article 19) – independent living funding

The UK Government should act upon the recommendation of the Work and Pensions Select Committee to set out a clear plan for identifying where new Employment and Support Allowance work-related activity group claimants have additional, unavoidable living costs relating to their condition, and ensure a financial support package is in place to adequately support all new claimants looking for, and moving into, work.

The UK Government should take swift action to reform the work capability assessment to offer a more flexible, personalised approach to providing support to unemployed disabled people, including those with the greatest needs and fluctuating conditions. The focus should be on identifying work potential and the types of adjustments and support that could remove barriers to individuals accessing and staying in work.

This should be separate from any financial assessment. Financial support for people unable to work, or where there are inadequate adjustments or personalised support in place, should not be conditional on actions linked to jobseeking or subject to benefit sanctions.

The UK Government must take steps to ensure compliance with CRPD article 19 where it has delegated responsibility for independent living funding to local authorities in England. These steps should include:

 providing sufficient funding to each local authority to meet the independent living needs of disabled people in their area through mechanisms (such as ring fencing)
that ensure the funding is used for that purpose

 providing guidance to local authorities to clarify what they must do to meet the
requirements of article 19, including examples of best practice, and

 putting in place a monitoring mechanism so that each local authority reports on
independent living funding and activities, and service-user experience, so the UK Government can assure itself that it is complying with article 19.

The right to an adequate standard of living and social protection (article 28) – poverty, material deprivation and food insecurity

The UK and devolved governments should examine the factors behind the higher levels of poverty among disabled adults and children and develop strategies to address these factors. The UK and devolved governments should ensure the rights of disabled people, including disabled children, are prioritised within anti-poverty strategies.

The UK Government should act on the findings of the July 2017 Trussell Trust report on food bank use, in particular the conclusion that an inquiry into the support and sufficiency of benefit allowances for disabled people is needed, especially in light of
new reforms which may have a further negative impact.

Updated UK-wide recommendations:

The UK Government should monitor and publish the impact of welfare reforms on disabled people. This should include assessments of the cumulative impact of taxand social security changes and public spending reductions on disabled people.

In relation to existing social security entitlement and any future reforms, the UK Government should address the UN criteria for non-retrogression to determine whether potentially regressive measures are temporary, necessary, proportionate and non-discriminatory, and that they do not undercut a core minimum level of protection, putting in place any mitigating measures required to safeguard disabled people’s rights.

To mitigate some of the adverse impacts on disabled people, the UK Government should:

 uprate all benefits in line with inflation and review the level of benefits to ensure
this meets adequate living standards

 reinstate the level of work allowance to the 2012 level

 reinstate the severe and enhanced disability premiums under Universal Credit

 provide increased support to disabled people placed in the Employment and Support Allowance work-related activity group that is equivalent to the support group and acknowledges the additional, unavoidable living costs relating to their condition

 all full-time disabled students who receive DLA or PIP should be eligible for Universal Credit on the grounds of being treated as having a limited capability for work

 carry out an equality impact assessment of the conditionality and sanctions system on claimants to ensure that sanctions are not disproportionately applied, and that conditionality is reasonable and based on flexibility of easements, specifically for lone parent families, ethnic minority groups and disabled people

 introduce publicly available service standards for the social security system that set out the rights of claimants, are fair and accessible, and measured and reported on

 ensure that work coaches are trained to deliver tailored employment support, providing evidence of the steps taken to ensure that the specific needs of lone parents and disabled people are being met.

The right to work and employment (article 27) – employment gaps and barriers

Updated UK-wide recommendations

The UK and devolved governments should evaluate how well employment support programmes help disabled people find and stay in work, and take steps to improve their effectiveness. This should include a regular and transparent evaluation of progress made on the UK Government’s ‘Improving lives: the future of work, health and disability’ strategy (November 2017) to ensure progress is seen as a shared, long-term, priority objective across all relevant Government departments.

The UK Government should:

 Introduce interim targets and a statutory reporting requirement on its commitment to a target of one million more disabled people in work over the next 10 years

 report regularly on progress, including by impairment group, and identify steps if progress is insufficient.

The UK Government should ensure that changes to the Access to Work programme comply with article 27 by:

 widening support for mental health and complex health or medical conditions

 monitoring any adverse impact on employment opportunities, for disabled people generally and for people with sensory impairments specifically

 introducing mitigations such as additional funding flexibilities, and extending transition arrangements, and

 putting in place a publicity programme for the Access to Work scheme among employers to increase awareness.

To help remove barriers to recruitment and retention of disabled people, the UK Government should build training on disability law and providing reasonable adjustments into new models of support resulting from the ‘Improving lives’ strategy.

The right to work and employment (article 27) – pay gap

Updated UK-wide recommendations

By April 2019 UK governments should:

 provide clear and country-appropriate guidance on the classification system to be used for disability monitoring by all types of organisations and practical guidance for different types/sizes of employers on how to collect, report on and use the data.

Once consistent classification, collection and reporting systems are in place to support employers to use employment data effectively, the UK Government should:

 require private, voluntary and listed public sector employers with 250+ employees to monitor and report on disability in recruitment, retention and progression within the workplace by April 2020

 require private, voluntary and listed public employers to publish a narrative and action plan with time-bound targets, informed by analysis of their disability data.

This analysis should help explain the factors underlying the data and focus on
how to make substantive improvements to the workplace.

Prejudice and negative attitudes (article 8)

The UK and devolved governments should:

 resource long-term positive awareness-raising campaigns, training and education to address prejudice and negative attitudes towards all disabled people, including those with mental health conditions and those claiming social security benefits

 ensure that government communications do not fuel prejudicial views, particularly with regard to the rights of disabled people claiming social security benefits, and

 ensure that there is awareness of the CRPD among disabled people, public service providers, and throughout society

Disability-motivated hate crime, hostility and harassment (articles 8 and 16)

To address under-reporting of disability-motivated hate crime, the UK and devolved governments should ensure that the police and other statutory agencies evaluate their reporting and recording processes, in consultation with disabled people, and take steps to simplify them.

The UK and devolved governments should employ consistent data collection methods across countries, the criminal justice system and within individual agencies to allow comparative and chronological analysis.

The UK Government should:

 undertake without delay a full-scale review of the aggravated offences and enhanced sentencing provisions to ensure parity for all characteristics protected under hate crime law

 monitor the use of sentencing guidelines to assess consistency in sentencing across all hate crime strands

 conduct a review of the provision of third-party reporting of hate crime in England and Wales; evaluate the impact and sustainability of provision; highlight geographical and thematic gaps; and ensure third-party and police recording systems are consistent

 ensure the police, Crown Prosecution Service and probation services adopt and publish a single, clear definition of a disability hate crime and communicate it effectively to the public and staff.

Access to justice (articles 12 and 13) – legal aid and advice

Updated England and Wales recommendations

In its review of the Legal Aid, Sentencing and Punishment of Offenders Act 2012 (LASPO) in 2018, the UK Government should consider the full range of evidence available on the impact of legal aid changes on people with certain protected characteristics. It should identify whether there have been disproportionate impacts on particular groups that may have limited their access to justice, and the availability of legal advice from non-government organisations, and take effective steps to mitigate those impacts. Those responsible for the review should seek input from disabled people, wider civil society and the EHRC.

The UK Government should further review the operation of the telephone gateway service (Civil Legal Advice) in England and Wales with regard to its accessibility and effectiveness, particularly for disabled people and parents of children with special educational needs (SEN), and mitigate any adverse impacts.

Access to justice (articles 12 and 13) – court and employment tribunals

Updated England and Wales recommendations

In light of the Supreme Court judgment on employment tribunal fees and the fundamental rights underpinning the court’s reasoning, the UK Government should not introduce any new barriers to accessing employment tribunals, and should reaffirm its commitment to ensuring equal access to justice for all.

The UK Government should ensure that all those who paid employment tribunal fees are reimbursed, and take steps to ensure anyone who was deterred from bringing claims because of fees has not been disadvantaged.

We also recommend that the UK Government:

 does not proceed with any court closures until it has collected the evidence about court users necessary to conduct a meaningful equality impact assessment, and has conducted that assessment

 conducts a thorough assessment of the digital literacy of court users in order to determine the nature and content of the support required to ensure access to justice in the context of increased digitisation, and

 establishes a clear evidence base setting out the impacts of virtual processes (including virtual hearings and online court processes) and the equality and human rights issues that need to be addressed before any new measures are introduced or existing pilots are extended.

Access to justice (articles 12 and 13) – disability discrimination in schools

The UK should allow education tribunals to award financial compensation for disability discrimination or harassment in schools.

There are more detailed recommendations in Annex 2 – from page 62 of the report and onwards.

You can read the report in full here

I don’t make any money from my work. I’m disabled through illness and on a very low income. But you can make a donation to help me continue to research and write free, informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.

Damian Hinds rebuked for misusing statistics and being conservative with the truth

October 9, 2018October 9, 2018 · 2 Comments ·

The statistics watchdog today issued a stern rebuke to Damian Hinds (pictured last week at the Tory Party conference in Birmingham) accusing his department of misleading the public over school funding and standards

Education Secretary David Hinds’ careful use of numbers doesn’t add up

The chair of the UK’s statistics watchdog has written to education secretary Damian Hinds for the fourth time this year, raising “serious concerns” about his department’s use of school funding statistics.

The UK Statistics Authority (UKSA) launched an investigation into the Department for Education over a minister’s claim that it was spending “record amounts” on school funding, after it emerged that the figures included billions of pounds of university and private school fees.

The figures cited by the DfE and school standards minister Nick Gibb, in defending the government’s spending on education, included the money paid out by university students on tuition fees and money that parents spent on private school fees.

Sir David Norgrove, chair of the UK Statistics Authority, wrote to Hinds this morning, chastising him for repeatedly using misleading statistics to support misleading claims.

Hetan Shah, CEO of the Royal Statistical Society, described the rebuke as “blistering”, and said it was “amazing” for Sir David to send such a letter to a minister.

“Extraordinary that [the Uk Statistical Authority] has felt it necessary to seek the secretary of state’s reassurance that his department remains committed to the statutory code of practice for statistics and, secondary that [the DfE] will start behaving in a manner that ‘does not mislead’,” he tweeted.

The row erupted last week after the DfE and Gibb cited figures saying that the UK was the third-highest spender on education as a proportion of economic output in the Organisation for Economic Cooperation and Development, a group of wealthy nations.

His comments came after more than 2,000 headteachers marched to Downing Street to protest at funding cuts. Headteachers also accused the government of eroding trust. Jules White, the head of Tanbridge House school in West Sussex and leader of the Worth Less? group, which has lobbied for fairer funding, said: “Parents and the wider public have a right to know the facts and the government cannot have it both ways; you cannot slash our budgets and then pretend all’s well.

“The constant use of misinformation is placing an intolerable strain on headteachers’ relationships with the DfE. Trust is being eroded. We respectfully request the DfE to publicly set the record straight and, much more crucially, work with the chancellor to make a real-terms investment in our schools in the upcoming budget. ”

Paul Whiteman, the general secretary of the National Association of Head Teachers, said: “If trust goes, there is little left for the profession to hold on to. Failing to face up to the truth will cheat an entire generation. The chancellor must now step up and rescue education funding. It is in the national interest.”

Mary Bousted, joint leader of the NEU teaching union, branded the DfE’s use of figures as “appalling.”

Hinds has defended the department’s use of figures today in a letter to the Statistics Authority, and pledged to work closely with it to ensure that “all departmental statistics to be both factually accurate and used in the right context”.

The shadow education secretary, Angela Rayner, said the UKSA letter represented a “humiliating rebuke” for Conservative ministers and called on the government to come clean over the crisis in school funding.

The intervention by the UKSA follows a row last week over a claim by the DfE and the schools standards minister, Nick Gibb, that the UK’s spending on education was the third highest in the world.

Complaints were made to the UKSA after it emerged in a BBC report that the OECD figures on which the claim was based included university student tuition fees as well as fees paid by private school pupils.

Hinds wrote to MPs over the weekend defending his department’s claims, but following its investigation, the UKSA ruled the figure “included a wide range of education expenditure unrelated to publicly funded schools … rather than a comparison of school spending alone.

The result was to give a more favourable picture. Yet the context would clearly lead readers to expect that the figures referred to spending on schools

An accompanying letter by Ed Humpherson, UKSA’s director general for regulation, to the DfE’s chief statistician piled on the criticism.

“The way statistics have been presented gives a potentially misleading picture of changes in schools funding,” he wrote. “It is important that the department present statistics and data professionally and I encourage you to continue to work with communication teams to minimise the risk of misleading the public.”

The UKSA complained about a DfE tweet on school funding featuring a graph with a truncated axis which had the effect of “exaggerating” school spending figures. The information was also presented in cash terms rather than real terms.

It also criticised Gibb’s claim that in an international survey of reading abilities of nine-year-olds, England had leaped up the rankings last year after decades of falling standards, moving from 19th out of 50 countries to 8th. “This is not correct,” Norgrove pointed out. “Figures published last year show the increase was from 10th place in 2011 to 8th place in 2016.”

The UKSA also ruled on a complaint from shadow education secretary, Angela Rayner, about the DfE’s oft-repeated claim that there were now “1.9 million more young people studying in good or outstanding schools”. The authority said the figure did not give a full picture and should be set in the context of increasing pupil numbers, changes to the inspection framework and out-of-date inspections.

“I am sure you share my concerns that instances such as these do not help to promote trust and confidence in official data, and indeed risk undermining them,” said David Norgrove.

The education secretary responded to the UKSA saying his department was “looking into the precise issues raised” but he went on to largely defend the disputed claims.

Here are both letters:

Header

The Rt Hon Damian Hinds MP
Secretary of State for Education
(via email)

8 October 2018

Dear Secretary of State

I am writing to raise with you serious concerns about the Department for Education’s presentation and use of statistics.

The UK Statistics Authority has had cause to publicly write to the Department with concerns on four occasions in the past year. 1

I regret that the Department does not yet appear to have resolved issues with its use of statistics. Last week, the Minister of State for School Standards wrote that, in an international survey of reading abilities of nine-year-olds, England “leapfrogged up the rankings last year, after decades of falling standards, going from 19th out of 50 countries to 8th.”2. This is not correct. Figures published last year show the increase was from 10th place in 2011 to 8th place in 2016.

My attention has also been drawn to a recent tweet and blog issued by the Department regarding education funding. 3 As the Authority’s Director General for Regulation has noted in a letter to the Department today, figures were presented in such a way as to misrepresent changes in school funding. In the tweet, school spending figures were exaggerated by using a truncated axis, and by not adjusting for per pupil spend. In the blog about government funding of schools (which I note your Department has now updated), an international comparison of spend which included a wide range of education expenditure unrelated to publicly funded schools was used, rather than a comparison of school spending alone. The result was to give a more favourable picture. Yet the context would clearly lead readers to expect that the figures referred to spending on schools.

The Shadow Secretary of State for Education has written to express concerns about your use of a figure that appears to show a substantial increase in the number of children in high performing schools, as judged by OFSTED. While accurate as far as it goes, this figure does not give a full picture. It should be set in the context of increasing pupil numbers, changes to the inspection framework and some inspections that are now long in the past, as an earlier letter to the Department from the Office of Statistics Regulation pointed out.

I am sure you share my concerns that instances such as these do not help to promote trust and confidence in official data, and indeed risk undermining them.

I seek your reassurance that the Department remains committed to the principles and practices defined in the statutory Code of Practice for Statistics. In particular, I urge the Department to involve the analysts closely in the development of its communications, to ensure that data are properly presented in a way that does not mislead.

I have asked the Authority’s Director-General for Regulation, Ed Humpherson to speak with Jonathan Slater, Permanent Secretary at the Department for Education, and to Neil McIvor, Head of Profession for Statistics at the Department for Education, about what the Department might do to improve its practice.

I am copying this letter to the Minister of State for School Standards, to Mr Slater and Mr McIvor, and to John Pullinger, the National Statistician.

Yours sincerely

Sir David Norgrove

1 Letter from Ed Humpherson to Head of Profession (March 2018) National Pupil Database Access
Letter from Sir David Norgrove to Shadow Secretary of State for Education (March 2018), School Funding
Letter from Ed Humpherson to Head of Profession (January 2018) International Reading Literacy Study
Letter from Ed Humpherson to Jonathan Slater (November 2017) Department for Education breaches of the Code of Practice

2 The Telegraph (27 September 2018): Our whizzpopping phonics revolution is transforming literacy in schools
3 Department for Education (28 September 2018): Tweet regarding school funding
Department for Education (28 September 2018): Education in the Media: Funding

response
Dear David,

Thank you for your letter.

I appreciate you drawing your concerns to my attention and very much welcome the work by the UKSA to ensure communication of statistics across Government meets the highest standards. We are keen to work closely with the UKSA and we want all departmental statistics to be both factually accurate and used in the right context.

We are looking into the precise issues that you raise, and the Permanent Secretary will write to the UKSA shortly with a more detailed response. It may be helpful though to respond on the points of substance, including for the public including for the public
record.

Taking funding first – we need to be clear about different types of funding and spending. However, several statistics in the OECD’s 2018 report comparing expenditure in 2015 (which as you know are the latest comparative data published by the OECD) demonstrate the UK as being among the higher spenders on education at primary and secondary level, whether you look at spend as a share of GDP, spend as a share of government spending or spend per pupil. It is true to say that the OECD has ranked the UK as the third highest for total education spending – the figure which includes tertiary and private education for every country. A more direct statistic about school spending
specifically is that among G7 nations the UK government spent the highest percentage of its GDP on institutions delivering primary and secondary education.

On overall school funding, core funding is rising to £43.5bn by 2019-20. Of course, I recognise that pupil numbers are rising, we are asking schools to do more and schools are facing cost pressures. I am on record setting this out with a range of different audiences and agree that context is important.

Moving on to the survey of reading abilities, it is true to say that we have achieved our highest score in PIRLS since it first began in 2001 – in 2016 we were placed joint 8th. We agree that we could have been clearer that the improvement from 19th to 8th was between 2006 and 2016. We have put a great deal of emphasis on the teaching of phonics, introducing the phonics screening check in 2012, and since then many more six year olds are on track to be fluent readers.

Regarding the 1.9m statistic, I believe it is important to establish that the proportion of children in schools whose last Ofsted judgement was Good or Outstanding has risen from 66% in 2010 to 86% in March 2018; to make this more intelligible we tend to use the number of children rather than a percentage figure – hence we express it as 1.9m more children in Good or Outstanding schools.

Our methodology is published at: https://www.gov.uk/government/publications/children-in-good-or-outstandingschools-august-2018. As you know, Ofsted use a range of triggers for a reinspection, such as an unexpected fall in exam performance.

Naturally we want to ensure we always present those factually accurate statements, and all others, in line with your Code of Practice for Statistics and I look forward to working with your team further on that. More widely, in the interests of making sure the public debate is well-informed, I hope that others who produce and use statistics which become regularly cited will also aspire to the highest standards of data integrity, and that the UKSA can play a role in challenging where data could easily be open to misinterpretation.

Thank you once again and please be assured of my, and my department’s, continued commitment to working with you on the integrity of statistics and informing the public debate.

signature

Esther Mcvey forced to apologise for being conservative with the truth

It’s truly priceless that Iain Duncan Smith can accuse anyone of misrepresenting statistics with a straight face.

Government plans to use your phone and online data to police your lifestyle and predict ‘threats’ to your health

October 8, 2018December 1, 2018 · 18 Comments ·

“Artificial Intelligence in healthcare is currently geared towards improving patient outcomes, aligning the interests of various stakeholders, and reducing healthcare costs.” CB Insights.

healthcare_AI_map_2016_1

The Care.Data scandal

Back in 2014, public concerns rose because drug and insurance companies were able to buy information about patients – including mental health conditions and diseases such as cancer, as well as smoking and drinking habits – from a single English database of medical data that had been created.

Harvested from GP and hospital records, medical data covering the entire population was uploaded to the repository controlled by an arms-length NHS information centre. Never before had the entire medical history of the nation been digitised and stored in one place. Advocates said that sharing data will make medical advances easier and ultimately save lives because it will allow researchers to investigate drug side effects or the performance of hospital surgical units by tracking the impact of interventions on patients.

However, data protection campaigners warned at the time that individuals were at risk of being identified and claimed notes were often inaccurate. The Department of Health was also criticised for failing to inform people they would be automatically opted into the scheme and would need to fill in a form if they wanted their medical records removed.

All 26 million households in England were notified about the Care.data scheme, so that individuals could choose to opt out, but many didn’t know they had that choice. Those behind the £50million data-sharing plan said it would “improve healthcare and help medical research.”

Many doctors were so incensed about the failure to protect patients’ data that they opted out their entire surgeries from the database, and the roll-out was eventually aborted in 2014. Privacy experts warned there will be no way for the public to work out who has their medical records or to what use their data will be put. The extracted information contained NHS numbers, date of birth, postcode, ethnicity and gender.

The controversial £7.5 million NHS database (Care.data) was scrapped very quietly on same day as Chilcot Report was released.

Phil Booth of medConfidential – campaigning for medical data privacy – said: “The toxic brand may have ended, but government policy continues to be the widest sharing of every patient’s most private data.”

“Personal data is now used not only to deliver but to deny services, so it’s more important than ever to check what’s on your records.”

He goes on to say: “Quite apart from the appalling mistreatment of generations of people, the Windrush scandal highlighted two deep problems about government’s handling of personal data. It confirms the government’s default position is one of disbelief – “guilty until proven innocent”, for some groups at least.

And it also confirms that – despite years of experience of the consequences, the government remains utterly cavalier in its stewardship of your data.

From the Home Office hunting people down through their NHS data and their children’s school records, to Google DeepMind’s secret deal intending to feed 1.6 million Royal Free Hospital patient records to its Artificial Intelligence project to Job Centre bosses interfering in medical records, and the Department for Education packaging up students’ personal data for private exploitation – as many have learned, “the power of data” is not always benign. Whether destroying the Windrush generation’s vital records or losing 25 million people’s records in the post, the consequences of poor information handling practices by Departments of the database state are always damaging to citizens.”

He’s right of course. The principle is one of private profits while the public carry the burden of risks every time.

There is widespread concern over insurance and marketing companies getting access to our personal health data. The bottom line is that patients must have clear information about what happens to their data, how it may be used, and must be given a clearly stated opportunity to opt out.

The ‘business friendly’ government: deja Vu and AI

Theresa May has again pledged millions of pounds to use Artificial Intelligence (AI) to “improve early diagnosis of cancer and chronic disease.” In a speech delivered earlier this year, May also called for the industry and charities to “join the NHS in creating algorithms that can predict a patient’s care requirements based on their medical records and lifestyle information.”

The government believes that early intervention would provide “less invasive, more affordable and more successful care than late intervention,” which they claim “often fails.”

While the government has assumed that the unmatched size of the NHS’s collection of data makes it ideal for implementing AI, many are concerned about data privacy.

Importantly, May’s proposal would once again allow commercial firms to access NHS data for profit.

In April 2018, a £1bn AI sector deal between UK Government and industry was announced, including £300million towards AI research. AI is lauded as having the potential to help address important health challenges, such as meeting the care needs of an ageing population.

Major technology companies – including Google, Microsoft, and IBM – are investing in the development of AI for healthcare and research. The number of AI start-up companies has also been steadily increasing. There are several UK based companies, some of which have been set up in collaboration with UK universities and hospitals.

Partnerships have been formed between NHS providers and AI developers such as IBM, DeepMind, Babylon Health, and Ultromics. Such partnerships have attracted controversy and wider concerns about AI have been the focus of several inquiries and initiatives within industry, and medical and policy communities.

Last year, Sir John Bell, a professor of medicine at Oxford university, led a government-commissioned review. He said that NHS patient records are uniquely suited for driving the development of powerful algorithms that could “transform healthcare” and seed an “entirely new industry” in profitable AI-based diagnostics.

Bell describes the recent controversy surrounding the Royal Free hospital in London granting Google DeepMind access to 1.6m patient records as the “canary in the coalmine”. “I heard that story and thought ‘Hang on a minute, who’s going to profit from that?’” he said.

Bell gave the hypothetical example of using an anonymised data for chest radiographs to develop an algorithm that eliminated the need for chest x-rays from the ‘analytical pathway’.

“That’s worth a fortune,” he said. “All the value is in the data and the data is owned by the UK taxpayer. There has to be really serious thought about protecting those interests as we go forward.”

However, Bell highlighted a “very urgent” need to review how private companies are given access to NHS data and the ownership of algorithms developed using these records.

Matt Hancock, the recently appointed health secretary, is now planning a “radical” and highly invasive system of “predictive prevention”, in which algorithms will use detailed data on citizens to send targeted “healthy living messages” to those flagged as having “propensities to health problems”, such as taking up smoking or becoming obese.

Despite promises to safeguard data, the plans have already once again attracted privacy concerns among doctors and campaigners, who say that the project risks backfiring by scaring people or damaging public trust in NHS handling of sensitive information. People’s medical records will be combined with social and smartphone data to predict who will pick up bad habits and stop them getting ill, under radical government proposals. Of course this betrays a fundamnetal assumption of the government: that illness arises because of bad “lifestyle choices.”

Hancock said: “So far through history public health has essentially dealt with populations as a whole.

“The anti-smoking campaign on TV is targeted at everybody. But using data, both medical data — appropriately safeguarded, of course, for privacy reasons — and using other demographic data, you can work out that somebody might have a higher propensity to smoke and then you can target interventions much more closely.”

However, the historical evidence of the government “safeguarding” our data effectively isn’t particularly confidence-inspiring.

Public Health England is already looking at using demographic and smartphone health data to personalise messages on healthy living and plans to launch pilot projects next year.

Initially the data will be limited to broad categories, such as age or postcode. Ultimately, however, including detailed information on individual housing, employment and income or people’s internet use has not been ruled out.

Hancock said: “We are now exploring digital services that will use information people choose to share, based on consent with only the highest standards on data privacy, to offer them precise and targeted health advice.”

Advice from whom? Unum and other private insurance companies? Businesses selling life style products? The pharma industry? Many campaigners are very concerned that the use of their data may lead to them being discriminated against by insurers or in the workplace.

Concerns

Another concern is how intrusive surveilance and data analytics is and how it may dehumanise patients. One NHS suicide prevention app, for example, that is currently in development, will monitor emails, texts and social media for signs that “people might be about to kill themselves.”

“Technology now allows us to offer people predictive prevention; tailored, intelligent advice on how to live longer, healthier lives,” Hancock said.

“This used to happen within the brains of the GPs in the partnership when they really knew the community and had personal relationships with everyone in the community. As GPs’ practices have come under more pressure, that’s become harder and we can use data really effectively to target people who have propensities to health problems.”

Another danger is the ongoing demedicalisation of illness and the deprofessionalisation of trained doctors. Healthcare professionals may feel that their autonomy and authority is threatened if their expertise is challenged by AI. The ethical obligations of healthcare professionals towards individual patients might be affected by the use of AI decision support systems, given these might be guided by other priorities or interests, such as political ideology regarding cost efficiency or wider public health concerns.

AI systems could also have a negative impact on individual autonomy. For example, if they restrict choices based on calculations about risk or what is in the best interests of the user.

If AI systems are used to make a diagnosis or devise a treatment plan, but the healthcare professional is unable to explain how these were arrived at, this could also be seen as restricting the patient’s right to make free, informed decisions about their health. Applications that aim to imitate a human professional raise the possibility that the user will be unable to judge whether they are communicating with a real person or with technology.

Although AI applications have the broad potential to reduce human bias and error, they can also reflect and reinforce biases in the data used to train them. Concerns have been raised about the potential of AI to lead to discrimination in ways that may be hidden or which may not align with legally protected characteristics, such as gender, ethnicity, disability, and age.

The House of Lords Select Committee on AI has cautioned that datasets used to train AI systems are often poorly representative of the wider population and, as a result, could make unfair decisions that reflect wider prejudices in society. The Committee also found that biases can be embedded in the algorithms themselves, reflecting the beliefs and prejudices of AI developers.

Sam Smith, of the privacy group medconfidential, warned that a “ham-fisted” plan might backfire, given the government’s poor record on data-handing. He said: “Predictive intervention has to be done carefully and in the right context and with great empathy and care, as it’s easy to just look creepy and end up with a ‘Mark Zuckerberg problem’ [where a focus on the power of data leads to a neglect of the human problems it is trying to solve].”

Humans have attributes that AI systems might not be able to authentically possess, such as compassion and empathy. Clinical practice often involves very complex judgments and abilities that AI currently is unable to replicate, such as contexual knowledge (such as existing comorbidities) and and the ability to read social cues. There is also debate about whether some human knowledge is tacit and cannot be taught.

AI could also be used for malicious purposes. For example, there are fears that AI could be used for covert surveillance or screening by private companies and others. AI technologies that analyse motor behaviour, (such as the way someone types on a keyboard), and mobility patterns detected by tracking smartphones, could reveal information about a person’s health without their knowledge.

Today it’s reported that NHS Digital is set to ignore the IT security recommendations of its own chief information officer, Will Smart, citing the estimated cost of between £800 million and £1 billion. It claims that the investment would not be “value for money”.

The recommendations were the result of a review, published in February, that was commissioned by government in response to the WannaCry ransomware attack, which affected one-fifth of all NHS trusts in the UK. The NHS was especially hard hit, not least due to a lack of up-to-date patching on Windows 7 workstations across the monolithic organisation, one of the biggest employers in the world.

The recommendations in Smart’s review had been endorsed by the National Cyber Security Centre (NCSC).

However, documents acquired under Freedom of Information by the Health Service Journal (HSJ), indicate that NHS Digital has opposed adoption of the recommendations on the grounds that they would not “be value for money”.

NHS Digital’s response comes despite the organisation coming under sustained and continual cyber attacks, including one called Orangeworm that specifically targets sensitive healthcare data. HSJ adds that malicious phishing websites mimicking NHS trusts have also been found, while one NHS organisation was found to have exposed a sensitive database online.

A scan by NHS Digital, it adds, found 227 medical devices connected to the internet with a known vulnerability. And four out of five NHS trusts failed to even respond to a ‘high severity’ cyber alert issued in April.

The review of NHS IT security by CIO Will Smart came four months after a damning report into the state of NHS IT security produced by the National Audit Office, which indicated that the NHS and Department of Health didn’t know how to respond to the outbreak.

With such a cavalier approach to basic IT security, it’s difficult to imagine how we can possibly trust the ‘business-friendly’ government and NHS with the stewardship of our personal health data. Personal data has become the currency by which society does business, but advances in technology should not mean organisations racing ahead of people’s basic rights. Individuals should be the ones in control and government and private organisations alike must do better to demonstrate their accountability to the public.

The use of AI in surgery

DA-VINCI-ROBOT

The Da Vinci surgicalrobot

An inquest heard recently heard how a patient who underwent ”pioneering’ robotic heart valve surgery at the Freeman hospital in Newcastle died days later after the procedure went horribly wrong.

Stephen Pettitt died because of multiple organ failure, yet it was expected that he was 98-99% chance of surviving the relatively low risk surgerical procedure.

Heart surgeon Sukumaran Nair had been offered training on the use of the robot with the hospital’s gynaecology department – but he refused.

He told a colleague later he could have done more “dry-run” training beforehand, the hearing heard.

The operation was planned to repair a mitral valve but damage was caused by the robot to the interatrial septum. The procedure had to be converted to an open heart operation where the chest was opened up to repair the tear.

Pathologist Nigel Cooper said: “By that time the operation had been going on for a considerable period of time. By the end of the surgery the heart was functioning very poorly.”

Medicines and a machine to help the heart function were brought in but Pettitt’s organs began to shut down and he didn’t recover.

The robot was so loud in use that the surgical team were shouting at one another and the same machine knocked a theatre nurse and destroyed the patient’s stitches, the Newcastle Coroner’s Court heard.

A leading heart surgeon, Professor David Anderson, told Newcastle Coroner’s Court the operation conducted by under-trained Sukumaran Nair, using the Da Vinci surgical robot, would not likely have ended that way had the robot not been used.

Anderson, a consultant cardiac surgeon at Guy’s and St Thomas’s Hospital, London, told the Newcastle hearing that Pettitt’s euroSCORE – the risk factor applied to heart surgery patients – was just 1-2% in normal circumstances.

Such was the concern at the completely botched six-hour-long procedure performed on Stephen Pettitt, that Northumbria police have launched a criminal inquiry.

Nair was fired from his job at Newcastle’s Freeman Hospital and their robotics heart programme ended. Newcastle coroner Karen Dilks recorded a narrative verdict into the retired music teacher’s death.

According to the US company behind the botched procedure, Intuitive Surgical Inc, “The surgeon is 100% in control of the da Vinci System at all times.”

However, there can be “serious complications and death” in any surgery, according to the business.

Risks during surgery include inadvertent cuts, tears, punctures, burns or injury to organs.

Don’t those stated risks negate the justification for using robotics to perform surgery – increased, not decreased, precision?

The company add: “It is advised the surgeon switch from minimally invasive surgery to open surgery (through a large incision) or hand-assisted surgery if problems occur.”

Artificial intelligence (AI) in healthcare and research

GPrX – the company that sells NHS data to sales teams for pharma industry can market products and target the prescribers

Government changes to Mental Capacity Act threatens human rights of vulnerable citizens

October 5, 2018December 19, 2018 · 18 Comments ·

Under the Conservative government, applications for the Deprivation of Liberty of citizens have soared. (Source: Court of Protection hub.)

In 2014, a Supreme Court judgment significantly widened the definition of deprivation of liberty, meaning more people were subsequently considered to have their liberty deprived. There was a ten-fold increase in the number of deprivation of liberty applications following the judgment. Services struggled to cope, deadlines were “routinely breached” and the Law Commission decided that the system should be replaced.

Law Commissioner Nicolas Paines QC said the Deprivation of Liberty Safeguards were designed at a time when fewer people were considered deprived of their liberty and now it was “failing” people it was set up to protect.

“It’s not right that people with dementia and learning disabilities are being denied their freedoms unlawfully,” he said.

“There are unnecessary costs and backlogs at every turn, and all too often family members are left without the support they need.”

Over the last eighteen months, the Law Commission – a statutory independent body created by the Law Commissions Act 1965 to keep the law of England and Wales under review and to recommend reform where it is needed – has been reviewing the framework that is called Deprivation of Liberty Safeguards (DoLs) which is put in place when a person who lacks capacity is placed in a care home.

Deprivation of Liberty, which is defined in part of the Mental Capacity Act 2005, is there to ensure that there are checks and balances for the person placed in care, that decisions are made in their best interest and that an independent advocate can be appointed to speak on their behalf in these decision making processes.

The Commission made recommendations to change the law, following public consultation. The recommendations included:

Enhanced rights to advocacy and periodic checks on the care or treatment arrangements for those most in need.
Greater prominence given to issues of the person’s human rights, and of whether a deprivation of their liberty is necessary and proportionate, at the stage at which arrangements are being devised.
Extending protections to all care settings, such as supported living and domestic settings, therefore removing the need for costly and impractical applications to the Court of Protection.
Widening the scope to cover 16 and 17 year olds and planned moves between settings.
Cutting unnecessary duplication by taking into account previous assessments, enabling authorisations to cover more than one setting and allowing renewals for those with long-term conditions.
Extending who is responsible for giving authorisations from councils to the NHS if in a hospital or NHS healthcare setting.
A simplified version of the best interests assessment, which emphasises that, in all cases, arrangements must be necessary and proportionate before they can be authorised.

However, the Law Commission recognised that many people who need to be deprived of their liberty at home benefit from the loving support that close family can provide. These reforms, which aimed to widen protections to include care or treatment in the home, were designed to ensure that safeguards can be provided in a simple and unobtrusive manner, which minimises distress for family carers.

Importantly, the Commission also recommended a wider set of reforms which would improve decision making across the Mental Capacity Act. This is not just in relation to people deprived of liberty. All decision makers would be required to place greater weight on the person’s wishes and feelings when making decisions under the Act.

Professionals would also be expected to confirm in writing that they have complied with the requirements of the Mental Capacity Act when making important decisions – such as moving a person into a care home or providing (or withholding) serious medical treatment.

The government responded and put forward proposals for changing the Mental Capacity Act. However, though this new legislation has been worded carefully, its effect will be to risk the removal of key human rights; it also ignores the entire concept of best interests and has put decision making power over people’s liberty and rights in the hands of organisations and their managers with a commercial interest in decisions and outcomes.

Any statutory scheme which permits the state to deprive someone of their liberty for the purpose of providing care and treatment must be comprehensible, with robust safeguards to ensure that human rights are observed.

In July 2018, the government published the Mental Capacity (Amendment) Bill, which if passed into law, will reform the Deprivation of Liberty Safeguards (DoLS), and replace them with a scheme known as the Liberty Protection Safeguards (although the term is not used in the Bill itself).

The Bill draws on the Law Commission’s proposals for reforming DoLS, but generally does not address some of the wider Mental Capacity Act reforms that the Law Commission suggested. Proposed reforms around supported decision making and best interests are not included, for example, and these omissions are very controversial.

In a statement accompanying the proposals the government claims that £200m per year will be saved by local authorities under the new scheme, though the increased role of the NHS and independent sector providers will lead to increased costs elsewhere.

The new responsibilities being imposed on care homes, Clinical Commissioning Groups (CCGs) and hospitals will need some thought, resources and training.

Members of the House of Lords have already warned that the Bill to reform the law on deprivation of liberty does not adequately secure the rights of people subject to restrictive care arrangements. In Parliament’s first debate on the Mental Capacity (Amendment) Bill on 16 May this year, peers questioned several elements of the legislation.

The Liberty Protection Safeguards are designed to provide a much less bureaucratic system than DoLS for authorising health and social care arrangements that involve a deprivation of liberty to which a person cannot consent.

The proposed Bill has been widely criticised because it contains insufficient safeguards and is not fit for purpose in its current form. It requires serious reconsideration and extensive revision.

The vast majority of both home care and residential care in England is now provided by private companies. Both the quality of care in adult social care and the terms and conditions of the workforce have declined over the past two decades as a result of privatisation.

The Department of Health’s review of Adult Social Care in 2015/16 discussed the introduction of red tape reduction options in non-statutory areas of DoLS applications, in the private sector, and concluded that these had been ‘exhausted’.

The review report (page 30) says: “As such, the Department has funded the Law Commission (as the experts in law reform) to perform a fundamental review of DoLS “with a view to minimising pressures on care providers.”

That must not come at the expense of safeguarding adults from exploitation for private profit.

In October 2017, the Prime Minister also commissioned a review of the Mental Health Act 1983, seeking to address concerns about how the legislation is currently being used.

The government called for an Act in step with a ‘modern mental health system’, giving special attention to rising rates of detention and the disproportionate number of people from black and minority ethnic backgrounds being detained under the Act. Terms of reference for the review are available to view online. The review was tasked to appraise existing practice and evidence, formulating recommendations to improve legislation and/or practice in the future.

The chair of the review is Simon Wessely. He said “The Mental Health Act goes to the core of the relationship between the individual and the state.

“It poses the question: ‘When is it legitimate to deprive someone of their liberty, even when they have done nothing wrong?’ It sets rules that require professionals to judge if a mentally ill person poses a risk to themselves or others, and hence needs to be detained in order to safely receive treatment. It tries to strike a fair bargain with the detained person, giving them safeguards like second opinions and tribunals to ensure due process.

“Reviewing the Act isn’t just about changing the legislation. In some ways that might be the easy part. The bigger challenge is changing the way we deliver care so that people do not need to be detained in the first place. In my experience it is unusual for a detention to be unnecessary – by the time we get to that stage people are often very unwell, and there seems few other alternatives available.

“But that does not mean this was not preventable or avoidable. The solutions might lie with changes to the legislation, but could also come from changes in the way we organise and deliver services. It would also be naïve to deny that much wider factors, such as discrimination, poverty and prejudice, could be playing a role.”

Wessely said his final report will make recommendations that require ‘significant’ new investment in the sector. However the government is looking to save money.

Wessely has played a notorious key role in the demedicalisation of myalgicencephalomyelitis / chronic fatigue syndrome (ME/CFS) research. Serving as an advisor to the hugely controversial PACE trial, Wessely has defended the study of these illnesses, and the proposed treatment regime of CBT and graded exercise, stating “this trial was a landmark in behavioral complex intervention studies.” Wessley’s purely psychological approach to these physiological illnesses has been widely criticised, he has been accused of “unsupported conclusions derived from faulty analyses.”

In 1988 the public water supply in Camelford in England was accidentally contaminated with aluminium sulfate. Wessely published a paper in 1995 playing down the effects of the pollution and suggesting ‘significant psychological factors’ were involved. The government formally and unreservedly apologised in 2013, 25 years later, to those whose health was affected by the water supply contamination.

Things Wessley has said about ME/CFS include “The worst thing to do is tell them to rest”, “exercise is good for these patients” and “[Welfare] Benefits can often make patients worse”. See Notes on the involvement of Wessely et al with the Insurance
Industry and how they deal with ME/CFS claims .

I’m not confident that either the stated aims or in the outcome of this ‘independent’ review. The government have already amended the Mental Capacity Act, removing Practice Direction 9, which provided safeguards for people with degenerative illnesses and brain injury in the event of the proposed withdrawal of nutrition and hydration by doctors (See British Medical Association proposals deemed passive ‘euthanasia by stealth’ for disabled people with degenerative illnesses).

The Law Society’s condemnation of the government’s Mental Capacity (Amendment) Bill 2018

The Law Society has issued a rather damning briefing on the Mental Capacity (Amendment) Bill 2018 that moved to a Lords committee stage in early September.

The Society says that the Bill is not fit for purpose: “While agreeing that simplification is needed and acknowledging that there are resource constraints, these constraints are “insufficient justification for not implementing fully the safeguards recommended by the Law Commission.”

The Briefing also sets out six recommendations for change, reflecting what the authors feel should be the principles underpinning the new framework and why they are concerned that the Bill does not meet those principles, as it includes:

an already overly complex scheme being further complicated by a replacement scheme which instead of placing the cared-for person at the centre of the process, significantly dilutes and even removes the existing protections for them
the risk of increased burdens on local authorities who will bear ultimate responsibility for mistakes and poor implementation rather than building on the learning from the problems with DoLS and retaining those elements that have been effective whilst removing those which are unnecessary and bureaucratic
the cared-for person will not be at the centre of the process but side-lined with decisions being made without proper or even basic protections
the removal of the invaluable role of Best Interests Assessors and Relevant Person’s Representatives would leave vulnerable people without protection from unnecessary detention.

You can read the Law Society’s full Briefing here: Parliamentary briefing: Mental Capacity (Amendment) Bill – House of Lords committee stage (PDF 196kb).

Junior health and social care minister Lord O’Shaughnessy opened the debate at the Bill’s second reading in the House of Lords by saying the Liberty Protection Safeguards (LPS) would be less burdensome than DoLS on people, carers and local authorities, saving the latter an estimated £160m a year.

He said it would do this by making consideration of restrictions on people’s liberties a part of their overall care planning and eliminating repeat assessments and authorizations. However, peers from across the House of Lords agreed that several aspects of the bill risked weakening safeguards for people deprived of their liberty.

Labour peer Lord Touhig, vice-president of the National Autistic Society (NAS), voiced concerns about the rights of autistic people under the bill’s proposals, insisting that many of the problems with the existing system had not been addressed.

He cited, as particularly problematic, the removal of the best interests assessment currently provided under DoLS, which ensures that arrangements to deprive a person of their liberty are in the individual’s best interests, necessary to protect them from harm and proportionate to the likelihood and seriousness of that harm.

Under the LPS, the equivalent requirement would be to establish that the arrangements are ‘necessary and proportionate’, one of three criteria that must be met for a LPS authorisation, the others being that the person lacks capacity to consent and is of ‘unsound mind’.

Touhig said: “The new criteria risk losing sight of what is best for the individual and what the individual wants.

“Let us be wary of enacting legislation that pays scant regard to the individual, in particular an individual who is perhaps the most vulnerable in society.”

Liberal Democrat peer Baroness Barker highlighted problems with the ability of bodies authorising LPS arrangements to rely on historic assessments of mental capacity, which may have been carried out for other purposes.

She said: “There is a danger that we might end up with decisions being made about a person’s capacity to make one decision which rests on information that was gathered for a wholly different purpose. That would not be right.”

Under the new title, ‘Liberty Protection Safeguards,’ the proposals mean that the Deprivation of Liberty Safeguard is removed from the Mental Capacity Act 2005, with a new administrative scheme for authorising arrangements when it comes to the deprivation of liberty.

In the Bill it says that the person responsible for decision making should ‘reasonably believe’, action to deprive someone of liberty is necessary to prevent ‘serious deterioration.’ One problem is that there is no guarantee in place that ensures a sharp focus on ensuring decisions are made in the best interest of vulnerable individuals. It is also important to ensure the new legislation allows for deprivation of liberty to be a very last resort.

There is also nothing in the Bill that explores what training will be made available to acting mental capacity professionals and where the costs of this will fall.

While the new system aims to remove the problems associated with getting authorisation when moving between a care home and hospital setting will be welcomed, whether this places new pressures on the sector will also need some consideration. It is therefore expected that the debate will consider the cost of new arrangements, with close attention being paid to the £200m a year the government project the system will save local authorities.

The government’s recent amendment is regressive and the changes, instead of looking after people’s best interests, appear to have become a cost-cutting exercise that can only lead to people’s human rights being removed.

In summary, key features of the Liberty Protection Safeguards (LPS) include:

Like DoLS (but contrary to the Law Commission’s suggestion) they start at 18. There is no statutory definition of a deprivation of liberty beyond that in the Cheshire West and Surrey Supreme Court judgement of March 2014 – the acid test.
Deprivations of liberty have to be authorised in advance by the ‘responsible body’
- For hospitals, be they NHS or private, the responsible body will be the ‘hospital manager’.
- For arrangements under Continuing Health Care outside a hospital, the responsible body will be the local CCG (or Health Board in Wales).
- In all other cases – such as in care homes, supported living schemes (including for self-funders), the responsible body will be the local authority.
For the responsible body to authorise any deprivation of liberty, it needs to be clear that:
- The person lacks the capacity to consent to the care arrangements
- The person is of unsound mind
- The arrangements are necessary and proportionate.
To determine this, the responsible body must consult with the person and others, to understand what the person’s wishes and feelings about the arrangements are.
An individual from the responsible body, but not someone directly involved in the care and support of the person subject to the care arrangements, must conclude if the arrangements meet the three criteria above (lack of capacity; unsound mind; necessity and proportionality).
Where it is clear, or reasonably suspected, that the person objects to the care arrangements, then a more thorough review of the case must be carried out by an Approved Mental Capacity Professional.
Where there is a potential deprivation of liberty in a care home, the Bill suggests the care home managers should lead on the assessments of capacity, and the judgment of necessity and proportionality, and pass their findings to the local authority as the responsible body. This aspect of the Bill has generated some negative comment, with people feeling that there is insufficient independent scrutiny of the proposed care arrangements.
Safeguards once a deprivation is authorised include regular reviews by the responsible body and the right to an appropriate person or an IMCA to represent a person and protect their interests.
As under DoLS, a deprivation can be for a maximum of one year initially. Under LPS, this can be renewed initially for one year, but subsequent to that for up to three years.
Again, as under DoLS, the Court of Protection will oversee any disputes or appeals.

The new Bill also broadens the scope to treat people, and deprive them of their liberty, in a medical emergency, without gaining prior authorisation.

A critical summary of changes from Law Commission proposals

Although the Bill is based on the proposals produced last year by Law Commission following a government-commissioned review of the law on deprivation of liberty in care, the government has not included several of the commission’s key proposals in the Bill.

Those in government working on the bill had “selectively picked” from the Law Commission’s proposals in place of accepting the “whole package of measures” that had been created to produce “a robust defence” for individuals.

Among Law Commission proposals that have been omitted are the application of the LPS scheme to 16- and 17-year-olds, reforming the best interests test under the Mental Capacity Act 2005 to place a greater weight on people’s wishes and feelings and reforming section 5 of the Mental Capacity Act to restrict the availability of the defence from liability for care staff acting in relation to a person whom they reasonably believe lacks capacity to consent to the actions concerned.

Some amendments have already been tabled to the Bill by Labour shadow health minister Baroness Thornton. These would apply the reforms to people 16- and 17-year-olds and specify that the provisions must be read in a way which is compatible with Article 5 of the European Convention of Human Rights, which secures the right to liberty.

With several questions regarding the Bill and the government’s decision to stray from the Law Commission’s proposals, it is expected that there will be more challenges.

The changes include:

The Commission’s original reference to necessity/proportionality is no longer tied specifically to risk of harm/risk to self, but simply, now, necessity and proportionality;
The Law Commission’s proposed tort of unlawful deprivation of liberty (actionable against a private care provider) has gone;
The LPS ‘line’ of excluding the LPS from the mental health arrangements has been changed, and the current status quo (i.e. objection) as regards the dividing line between the MCA/MHA in DOLS is maintained.

Lord O’Shaughnessy appeared to address this fact in his final comments during the second reading, saying the government would “reflect on” whether changes could be made.

“It has been clear from this debate that there is still much work to be done to provide the right kind of reforms that we all want to see,” O’Shaughnessy said.

Some amendments have already been tabled to the bill by Labour shadow health minister Baroness Thornton. These would apply the reforms to people 16- and 17-year-olds and specify that the provisions must be read in a way which is compatible with Article 5 of the European Convention of Human Rights, which secures the right to liberty.

The first day of the Lords Committee stage of the Mental Capacity (Amendment) Bill took place on 5 September. The Hansard transcript can be found here and here.

‘A backward step’

Sarah Lambert, head of policy and public affairs at the National Autistic Society (NAS), reiterated the arguments of those inside the House of Lords, saying: “NAS has substantial concerns that the bill, as drafted, does not put autistic or other individuals, who lack capacity, at the centre of decisions about their care.”

“Firstly, the bill moves away from the current position, where decisions should be made in someone’s ‘best interests’ and so risks losing sight of what is best for the individual, or what that individual wants.”

“Even though someone may lack capacity to make a decision about their living arrangements, their preferences or wishes should be a central factor in any decision about their lives. This makes it a backward step in protecting the rights people who lack capacity to consent to their care.”

“We will be working with members of the House of Lords and MPs as the bill passes through Parliament to make sure substantial amendments are made to secure the rights of autistic people and others.”

The Bill is so contentious as it does, in places, significantly depart from the recommendations of the Law Commission. Furthermore, the Joint Committee on Human Rights (JCHR) provided a repor t on the Law Commission’s proposals in July, and this report raised other issues that will need to be considered by Parliament.

One issue highlighted is the importance of establishing a clear definition of “deprivation of liberty” so that Article 5 (of the Human Rights Act) safeguards are applied to those who truly need them. The JCHR recognised that deprivation of liberty is an evolving Convention concept rooted in Article 5; the arising difficulty is how this is interpreted and applied in the context of mental incapacity.

The report says: “Parliament should provide a statutory definition of what constitutes a deprivation of liberty in the case of those who lack mental capacity in order to clarify the application of the Supreme Court’s acid test and to bring clarity for families and frontline professionals. Without such clarity there is a risk that the Law Commission’s proposals will become unworkable in the domestic sphere.”

Another problem raised is that at present, the Legal Aid Agency can refuse non-means tested certificates for challenges to DoLS where there is no existing authorisation. The current system has produced arbitrary limitations on the right of access to a court. Legal aid must be available for all eligible persons challenging their deprivation of liberty, regardless of whether an authorisation is in place, particularly given the vast number of people unlawfully deprived due to systemic delays and failures, according to the JCHR.

There is also concern raised over the term “of unsound mind”, little understood and arguably more stigmatising. The JCHR has recommended that “further thought be given to replacing ‘unsound mind’ with a medically and legally appropriate term.”

The report concludes: “DoLS apply to those with a mental disorder. LPS will apply to persons of ‘unsound mind’ to reflect the wording of Article 5. We recommend that further thought be given to replacing “unsound mind” with a medically and legally appropriate term and that a clear definition is set out in the Code of Practice.

“The interface between the Mental Capacity Act (MCA) and the Mental Health Act (MHA) causes particular difficulties. Deciding which regime should apply is complex, and causes the courts and practitioners difficulties. The Law Commission proposes to maintain the two legal regimes: the MHA would apply to arrangements for mental disorders; the LPS would apply to arrangements for physical disorders. Inevitably, problems will continue to arise at the interface between these two regimes. We are particularly concerned by two issues.

“Firstly, this proposal requires assessors to determine the primary purpose of the assessment or treatment of a mental or physical disorder–this is difficult where persons have multiple disorders. Secondly, we are concerned that there would be essentially different laws and different rights for people lacking capacity depending upon whether their disorder is mental or physical. We consider that the rights of persons lacking capacity should be the same irrespective of whether they have mental or physical disorders.”

The Law Commission’s Recommendations made an attempt to include protection for a person’s Article 8 rights (of the European Convention on Human Rights: right to a family and private life) within the proposed amendments to the Mental Capacity Act by specifying a list of applicable decisions that require a written record of decision making (including any decision regarding covert medication and contact restrictions).

The Bill makes no reference to this however (despite the government accepting this part of the proposal in their response), focusing only on Article 5 rights. This is likely to be of great concern to many campaigners and stakeholders and therefore may become a pertinent issue in Parliament. In the meantime, the current law on Article 8 authorisations and covert medication remains in place.

The current DOLS framework requires a best interest assessor to determine whether a deprivation of liberty is in a person’s best interests. The Amendment Bill, however, requires no consideration of best interests, only requiring that the arrangements are ‘necessary and proportionate.’

Although this is partly is line with the Law Commission’s proposals that the LPS should remove the focus on best interests to move away from substituted decision making (in line with the Convention on the Rights of Persons with Disabilities), the Bill contains no explanation of what is meant by ‘necessary and proportionate’ or how these should be assessed. It is expected that concern will be raised in Parliament regarding the removal of best interests from the LPS and the lack of guidance surrounding necessity and proportionality.

The Bill will affect the fundamental human rights of hundreds of thousands of people with conditions such as dementia, learning disability and brain injury.

Commenting on the Bill Sue Bott CBE, Deputy CEO Disability Rights UK said:

“I am concerned with the contents of this Bill which takes the rights of disabled people backwards.

“There is nothing more serious for an individual than a decision to deprive them of their liberty yet, as it stands, this Bill will make challenging such decisions difficult and costly with little independent oversight and no commitment to taking the views of the individual into account.

“I hope members of the House of Lords will, through amendments, be able to radically improve the Bill.”

Among the concerns highlighted by Disability Rights UK are:

The very least people, who are detained, need is information about why that decision has been made and what their rights are – there is no provision for this in the Bill
The Bill makes access to justice worse than the current system in not providing for non-means tested legal aid
There is no provision for the ‘cared for’ person to participate in court proceedings regarding their own liberty
Contains offensive and out-of-date language such as ‘unsoundness of mind’
Too much power is being given to care home managers to decide about people being deprived of their liberty
The Bill moves UK law even further away from the UN Convention on the Rights of People with Disabilities by not providing for supported decision making and for the wishes and feeling of the person to be taken into account.
The Bill in its current form is not supported by professionals in this area.

The right to life and state compliance with Article 2 (ECHR)

The past five years have been challenging in terms of health outcomes in the UK, they add. For example, spending on health and social care year on year has increased at a much slower rate than in previous years, while outcomes in a large number of indicators have deteriorated, including a very rapid recent increase in the numbers of deaths among mental health patients in care in England and Wales. The government has a duty and a role to provide specific care for people experiencing mental health conditions at a time of vulnerability. That role must comply with Article 2, which:

Imposes an obligation on the State to protect the right to life.
Prohibits the State from intentionally killing.
Requires an effective and proper investigation into all deaths caused by the State.
Requires the State to take appropriate steps to prevent accidental deaths by having a legal and administrative framework in place to provide effective deterrence against threats to the right to life.

The Policing and Crime Act 2017 came into effect to amend the Coroners and Justice Act 2009 and relieved coroners of the duty to hold an inquest into every death where the deceased was subject to a Deprivation of Liberty Safeguards authorisation or was deprived of their liberty through provisions in the Mental Capacity Act 2005. Coroners’ inquests into unnatural deaths involving health and social care organisations are on the increase.

Where a DOL is in force, the State has effectively curtailed the liberty of the patient; as such when the patient dies then the death is equivalent to a detention in custody. Article 14 of the Convention prohibits discrimination in the enjoyment of the Convention rights. This means that the State must ensure that the right to life of people with mental health conditions is given equal protection to that of other people.

There have been a number of other legal developments that change the way decisions about life-prolonging treatments are made, in addition to the recent court judgments and the government’s radical withdrawal of the Court of Protection’s Practice Direction 9E which addresses protections concerning serious medical treatment.

The direction was effectively abolished by the Ministry of Justice and the changes came into effect last December. The Court of Protection in English law is a superior court of record created under the Mental Capacity Act 2005. It has jurisdiction over the property, financial affairs and personal welfare of people who lack mental capacity to make decisions for themselves.

One consequence of this is the British Medical Association’s recent proposals in response to legal test cases in which judges ruled that qualified NHS staff and officials no longer required a court’s permission to withdraw artificial nutrition and hydration from those patients who are incapacitated and unable to communicate or feed themselves.

The Supreme Court justices’ decision in July supported the right of doctors to withdraw life-sustaining nutrition on their own authority, provided they had the explicit permission of the patient’s family or, where no family existed, medical proxy. If there is a disagreement and the decision is finely balanced, an application should still be made to the Court Of Protection.

Changes to protections were introduced via secondary legislation – a negative resolution statutory instrument – there was very little parliamentary scrutiny. Furthermore, as the instrument is subject to negative resolution procedure no statement regarding implications in relation to the European Convention on Human Rights was required from government ministers, nor was public consultation deemed necessary. An Impact Assessment has not been prepared for this instrument.

The fact that the UK government had already made amendments to safeguarding laws to accommodate these proposals, which took effect last December, and now plan to make it easier to remove people’s liberty under the Mental Health Act without public consultation, has caused deep unease. In the latest proposed changes to the Mental Health Act, the government seems to think it is appropriate to consider restrictions of people’s liberties as part of their overall ‘care package,’ and approach which is not compatible with human rights.

Changing legislation isn’t going to improve the lives of people with mental illness. Improving mental health services depends on funding, the right number of well-trained staff and the right resources to meet the needs of patients, their families and carers.

More information on concerns about the Bill can be found here

You can read the most recent debate about the Mental Capacity Amendment Bill in the House of Lords on 05 September 2018 here.

I don’t make any money from my work. If you want to, you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others.

British Medical Association proposals deemed passive ‘euthanasia by stealth’ for disabled people with degenerative illnesses

October 1, 2018October 2, 2018 · 18 Comments ·

Image result for euthanasia

The British Medical Association have put forward proposals in response to legal test cases in which judges ruled that qualified NHS staff and officials no longer required a court’s permission to withdraw artificial nutrition and hydration from those patients who are incapacitated and unable to communicate or feed themselves.

The Court of Protection is the specialist court for all issues relating to people who lack capacity to make specific decisions. The court can make decisions and appoint deputies to make decisions about someone’s property and financial affairs or their healthcare and personal welfare.

Under the Mental Capacity Act 2005 (which is also currently being re-written by the government), the court has the power to:

• make decisions about the personal welfare or property and financial affairs of people who lack the capacity to make such decisions themselves;
• make declarations about a person’s capacity to make a decision;
• make decisions in relation to serious medical treatment cases, which relate to providing, withdrawing or withholding treatment to a person who lacks capacity;
• authorise deprivation of liberty in relation to a person’s care and residence arrangements;
• appoint a deputy to make ongoing decisions on behalf of a person who lacks capacity, in relation to either the person’s personal welfare or property and financial affairs; and
• make decisions about a Lasting Power of Attorney or Enduring Power of Attorney, including whether the power is valid, objections to registration, the scope of the attorney’s powers and the removal of attorney’s powers

According to the draft proposals currently being circulated by the British Medical Association (BMA), doctors should be granted the authority to end the lives not only of those patients who are near death or in vegetative or minimally conscious states but also “the much larger group of patients who have multiple co-morbidities, frailty or degenerative neurological conditions.”

This also includes stroke patients and those with “rapidly progressing brain injury.”

However, on the NHS site, it says: “In most cases, a minimally conscious state isn’t usually considered to be permanent until it’s lasted several years.

“It’s impossible to predict the chances of someone in a state of impaired consciousness improving.”

“Supportive treatment is used to give the best chance of natural improvement.

“This can involve:

providing nutrition through a feeding tube
making sure the person is moved regularly so they don’t develop pressure ulcers
gently exercising their joints to prevent them becoming tight
keeping their skin clean
managing their bowel and bladder (for example, using a tube known as a catheter to drain the bladder)
keeping their teeth and mouth clean
offering opportunities for periods of meaningful activity – such as listening to music or watching television, being shown pictures or hearing family members talking.”

And importantly: “It’s impossible to predict the chances of someone in a state of impaired consciousness improving.”

The authors of the BMA document say: “Due to the degenerative nature of their condition, these patients are on an expected downward trajectory and will inevitably die, usually as a result of their underlying condition, although perhaps not imminently and could, potentially, go on living for many years.”

In the Executive Summary of the BMA document, it says that no second opinion need be obtained unless there is ‘reasonable doubt about the diagnosis or prognosis, or where the healthcare team has limited experience of the condition in question’ [ …] ‘it is not necessary to wait until (investigations) have been completed’ if there is not ‘sufficient evidence’ that they will ‘affect the outcome of the best interests assessment’

Nutrition and hydration delivered by tubes is currently legally defined as ‘medical treatment’ and not ‘basic ‘care’.

There have been a number of legal developments that change the way such decisions about life-prolonging treatments are made, in addition to the recent court judgments and the government’s radical withdrawal of the Court of Protection’s Practice Direction 9E which addresses protections concerning serious medical treatment.

As the changes to protections were introduced via secondary legislation – a negative resolution statutory instrument – there was very little parliamentary scrutiny. Furthermore, as the instrument is subject to negative resolution procedure no statement regarding implications in relation to the European Convention on Human Rights was required from government ministers, nor was public consultation deemed necessary. An Impact Assessment has not been prepared for this instrument.

The Law Society has issued a rather damning briefing on the Mental Capacity (Amendment) Bill 2018 that moved to a Lords committee stage, early last month.

In their briefing, the society say: “While agreeing that simplification is needed and acknowledging that there are resource constraints, these constraints are “insufficient justification for not implementing fully the safeguards recommended by the Law Commission.”

It is in light of the most recent change in legislation that the British Medical Association (BMA) put forward proposals that mean doctors may be permitted to end the lives of patients who may otherwise have survived for years, by the withdrawal of nutrition and hydration, without the need to go to court. While this reduces substantial cost to the NHS in terms of legal fees and in the prolonged treatment for some patients, not everyone is comfortable with these developments.

Writing critically about the legislation changes last year, Mohamed Y Rady and Joseph L. Verheijde say:

“(1) starvation and dehydration is certain to cause death without the presence of concurrent life-limiting disease or life-threatening illness and (2) the dying process by starvation and dehydration can last two to three weeks and can be distressful to both patients and their families. We disagree with the legal and clinical stipulation (post-Bland [a legal case]) that assisted nutrition and hydration (ANH) is medical treatment. Instead, as adopted in many other jurisdictions, we hold that ANH constitutes ‘a basic compassionate care service rendered to disabled persons’.

“We think that court oversight is of practical importance for the safety of the general public and the protection of vulnerable disabled persons in society.

“We outline our rationale for advocating that court oversight should not be limited to Vegative State/Minimal Conscious State but should include any person.”

The authors added: “The clinical guidelines have distinguished only three levels of disorders of consciousness (DOC) (coma, Vegative State (VG), and Minimal Conscious State (MCS) based on clinical assessment for the presence or absence of awareness and wakefulness. However, the diagnostic accuracy of the guidelines’ criteria and definitions of the three levels of DOC has not been validated scientifically. Cohort studies suggest that the rate of clinical misdiagnosis in VS is at least 41% and this error rate has not declined over the past 15 years.

“Incorrect diagnosis can result in a fatal outcome because of premature withdrawal of medical care and ANH. The clinical guidelines have not yet acknowledged the relevance of contemporary neuroscience advances to increase the diagnostic accuracy and expand on the available therapeutic options in DOC. Incorrect diagnosis and/or withholding of therapy in DOC violates the trust of families in the transparency and truthfulness of clinicians who are making life and death decisions on behalf of their loved ones.

“The clinical guidelines have recommended that a neurological diagnosis and prognosis should be made at least within four weeks after the onset of prolonged DOC to determine futility of continued medical care and ANH (Royal College of Physicians of London. Under these circumstances, we propose that court oversight can provide an additional safeguard by including independent neuroscience experts to confirm the clinical diagnosis and prognosis of DOC and to ensure that the decision-making processes are well-informed and as rigorous as possible. Life and death decisions in DOC should be supported by contemporary neuroscience, among other considerations, and not be based on outdated clinical guidelines.”

In summary, the authors propose that until such time as we have greater clarity and understanding about the disorders of consciousness, and about the legal and ethical principles to be applied, there remains a need for independent oversight and that applications to the court should continue to be obligatory in all cases where the withdrawal of ANH is proposed, at least for the time being.

Their paper can be read in full here.

The BMA proposals to withdraw nutrition and hydration tubes have also been condemned as ‘euthanasia by stealth’.

Dr Peter Saunders, from the group Care Not Killing, said: “This is a recipe for euthanasia by stealth, but all in the name of autonomy and best interests – the very worst kind of doctor paternalism justified on the grounds that the patient would have wanted it.

“There are conceivably tens of thousands of patients in England and Wales who are vulnerable to the use and abuse of this guidance.

“It will be almost impossible to work out what has happened in a given case and there are no legal mechanisms in place for bringing abusers to justice.”

The landmark Bland ruling set down that artificial nutrition and hydration by tube are not normal feeding but ‘medical treatment’. It also said that it might not be in a patient’s best interests to be treated, and if medical treatment is not in the best interests of a patient who cannot speak for themselves, it can be stopped. Tony Bland, a Liverpool football supporter was just twenty-two when he suffered severe brain damage in the crush at Hillsborough football stadium in April 1989. The court ruled that he should be allowed to die.

The BMA document was circulated, however, in June. This follows after a court ruling in 2017, which concluded that there was no requirement for court approval before removing patients’ nutrition and hydration tubes.

More recently in July, the country’s highest appeal court, the Supreme Court, ruled in the test case of a patient known only as ‘Y’ that doctors can decide a patient should die without reference to a court.

A spokesman for the BMA said that decisions surrounding the withdrawal of clinically assisted nutrition and hydration (CANH) presented “clinical, ethical and legal challenges.”

He added: “Following a number of legal developments, the BMA has been working with the Royal College of Physicians and the General Medical Council to produce guidance on best practice for health professionals when facing decisions about CANH.

“CANH is a form of medical treatment. The aim of medical treatment is not simply to prolong life at all costs, and the courts have been clear that in some circumstances it will not be in the best interests of the individual patients to receive it.

“Those making these decisions must do so in full dialogue with families to determine what is right for the individual patient, and of course, when there is any disagreement the court still has an important role to play.”

These proposals come at a time when health care has been subjected to increasing rationing.

The BMA document says that the decisions on removing nutrition and hydration tubes should be taken by consultants for hospital patients, or GPs for those in nursing or residential homes or living in their own homes. It was suggested that families or friends should be consulted, usually through ‘best interests meetings’ set up to decide whether it would be better for a patient to live or die. However, the BMA suggested that family and friends should not have the final say on the matter.

In the Executive Summary, the BMA say that no second opinion need be obtained unless there is ‘reasonable doubt about the diagnosis or prognosis, or where the healthcare team has limited experience of the condition in question’ [ …] ‘it is not necessary to wait until (investigations) have been completed’ if there is not ‘sufficient evidence’ that they will ‘affect the outcome of the best interests assessment’

Shockingly, the BMA also propose that when patients die after the withdrawal of nutrition and hydration tubes, this should not be mentioned on death certificates. Instead only the underlying original condition should be given.

Professor Patrick Pullicino, from East Kent Hospitals University NHS Trust, said that this “directs doctors to falsify death certificates. It tells doctors to put down the pre-existing condition and not that they died of dehydration. It will totally conceal the statistics of patients who are being dehydrated to death.”

Understandably, doctors and campaigners who are opposed to euthanasia and the deliberate termination of life by medical staff have condemned the proposals.

Pullicino, who is the consultant that helped expose the controversial hospital deaths under the discredited Liverpool Care Pathway, said the BMA plan was ‘terrible’.

He added: “It codifies current practices of withdrawing food and fluid at the end of life and thereby encourages it.

“It facilitates the extension of end-of-life pathways to people with neurological diseases who are not dying, which is a very negative thing because there are a lot of disabled neurological patients.

“It perpetuates the myth of ‘best interests’, which has been shown to be erroneous and reflective of members’ views and not of the real best interests of the patients.”

I agree. My inital thoughts are that we need to guarantee people with disabilities have access to high quality palliative care. We need to have a process which reviews every incidence of proposed euthanasia, and that panel needs to include people with disabilities. We need to ensure that family members and service providers or anyone else who will benefit financially cannot abuse any application for end of life withdrawal of clinically assisted nutrition and hydration.

We also need to ensure the absolute transparency and accountability of decision-makers, which must include an accurate and honest record of cause of death on death certificates. Coroners have a duty to prevent future deaths, where medical mistakes have been made.

There is no clear definition of ‘degenerative diseases’ in the BMA document. Some illnesses, such as multiple sclerosis, lupus and other autoimmune mediated diseases, for example, may be progressive. Several of these illnesses may affect the neurological system. Most of the treatments for this group of disorders are experimental. People can improve over time, with or without some treatments, following periods of being critical ill. Many of the treatments are only prescribed as a last resort, as they are prohibitively expensive (biologics in particular) especially at a time of heavy NHS funding cuts. The outcomes of these diseases are widely variable from one person to the next. People may have indefinite remissions after years of being seriously ill.

Even if these types of disease are not currently included in the BMA guidelines, complications or co-morbidities and frailty arising over the course of an illness may be.

What guarantee do we have that the categories won’t expand over time?

The legislative changes have been couched in terms of ‘saving money’. The purpose of the NHS is to save lives. Everyone has the basic right to life, that must not be contingent on the ideological preferences of a ‘small state’ neoliberal government. ‘Best interests’ are not an political category, nor are they open to ideological interpretation.

The UK government’s brand of ideological paternalism towards poor people claiming welfare support, for example, involves the removal of the means of meeting basic survival needs as a punishment in the form of sanctions, also considered to be in people’s ‘best interests’.

Unemployment itself has been redefined as a psychological or character disorder over the last few years, and the welfare state has become a political environment for administering discipline, which has shifted it away from the original purpose of providing basic support and alleviating poverty. Behavioural economics has contributed to bolstering this perspective by pathologising people who need support from publicly funded public services via claims of ‘cognitive deficits’ of poor people, rather than acknowledging the structural explanations of poverty. Perish the thought that a socioeconomic system founded on competition would foster inequality.

In healthcare there has been a shift towards ‘behavioural medicine’ too, apparent in the controversial PACE trial and a general emphasis on people’s ‘lifestyle choices,’ and personal responsibility. However these are extremely overly simplistic ideolological narratives that have not emerged because of robust empirical evidence. Public services were not originally designed to punish poor people who need them. Yet the withdrawal of the means of citizens meeting their basic survival needs seems to have become normalised. Pathologising and punishing people who need the support of public services has somehow become acceptable.

The increasing rationing of treatments within the NHS and the neoliberal logic underpinning this is also a cause for concern. People who need support from any public service are subjected to increasing conditionality and rationing in an era of neoliberal austerity.

A spokesman for the BMA said that decisions surrounding the withdrawal of clinically assisted nutrition and hydration (CANH) presented “clinical, ethical and legal challenges.”

“We shared the draft guidance in confidence with legal and health professionals and organisations and patient support groups to seek their views. The final version will reflect last month’s Supreme Court judgment when it is published this year.”

The guidance says it is based on the current legal position which it defines as follows:

Clinically assisted nutrition and hydration (CANH) – essentially food and fluids by a fine tube through the nose or through the skin into the stomach – is a form of medical treatment
Treatment should only be provided when it is in a patient’s ‘best interests’
Decision makers should start from the presumption that it is in a patient’s best interests to receive life-sustaining treatment but that presumption may be overturned in individual cases
All decisions should be made in accordance with the Mental Capacity Act 2005 (which the government is proposing to amend).

The 77-page ‘confidential’ document, which is currently out for ‘consultation’ (although only to a few selected individuals), has been prepared by the BMA in conjunction with the Royal College of Physicians (RCP) and the doctors’ regulatory authority, the General Medical Council (GMC). It will not be open for public consultation at any point before publication later in the autumn.

The draft guidance, which builds on case and statute law and on previous practice guidelines, has huge implications for the care of some of the most vulnerable people in England and Wales.

However, it does not permit assisted dying – which is when a patient wants to end their life. British parliaments have consistently refused to legalise active euthanasia or assisted suicide for people with a quality of life they would not find ‘acceptable’ or would not ‘have wanted’. The BMA is proposing that doctors, not patients should make the choice to end a life, and that to end lives by starvation and dehydration, rather than with a lethal injection, is somehow perfectly acceptable.

So acceptable in fact that the BMA propose starvation and dehydration or withdrawal of care (or treatment if you wish) should be left off the death certificate, suggesting instead that the ‘underlying medical condition’ should be recorded as the cause of death. This suggestion does not inspire confidence in transparency and accountability concerning such fundamentally irreversible medical decisions, since the record of death hides errors in judgment and diagnoses, prevents scrutiny and prevents coroners from fulfilling the mandatory obligation to ‘prevent future deaths’ in the case of medical incompetence, negligence, abuse, deceit and error.

I don’t make any money from my work. I am disabled because of an illness called lupus. If you want to, you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others.

I’m currently working on a very old, borrowed, temperamental and slow laptop as mine has broken. I am trying to raise money to buy a reconditioned one so I can keep working. The smallest amount is much appreciated – thank you.

Research finds ‘inaccuracies and distortions’ in media coverage of antisemitism and the Labour Party

October 1, 2018March 1, 2019 · 7 Comments ·

Noam Chomsky, Yanis Varoufakis, Ken Loach, Brian Eno, Des Freedman, Justin Schlosberg and 21 others write about a recent report by the Media Reform Coalition.

Source: Guardian Letters Sunday 30 Sep 2018

We have long had serious concerns about the lack of due impartiality and accuracy in the reporting of allegations of antisemitism against Jeremy Corbyn and the Labour party. The recent report by the Media Reform Coalition examining coverage of Labour’s revised code of conduct on antisemitism shows that we are right to be concerned.

The research examined over 250 articles and broadcast news segments and found over 90 examples of misleading or inaccurate reporting. In relation to the IHRA definition of antisemitism that was at the heart of the dispute, the research found evidence of “overwhelming source imbalance” in which critics of Labour’s code of conduct dominated coverage, with nearly 50% of Guardian reports, for example, failing to include any quotes from those defending the code or critiquing the IHRA definition. Moreover, key contextual facts about the IHRA definition – for example that it has only been formally adopted by eight countries (and only six of the IHRA member states) – were consistently excluded.

The researchers conclude these were not occasional lapses in judgment but “systematic reporting failures” that served to weaken the Labour leadership and to bolster its opponents within and outside of the party.

It is of course entirely appropriate and necessary for our major news outlets to report on the horrors of antisemitism, but wrong to present it as an issue specific to the Labour party.

In covering the allegations that Labour is now “institutionally antisemitic”, there have been inaccuracies, clear distortions and revealing omissions across our most popular media platforms. We believe that significant parts of the UK media have failed their audiences by producing flawed reports that have contributed to an undeserved witch-hunt against the Labour leader and misdirected public attention away from antisemitism elsewhere, including on the far right, which is ascendant in much of Europe.

Prof Noam Chomsky
Brian Eno
Francesca Martinez
Yanis Varoufakis
Ken Loach
Raoul Martinez
Justin Schlosberg Birkbeck, University of London
Prof Des Freedman Goldsmiths, University of London
Prof Imogen Tyler Lancaster University
Prof Aeron Davis Goldsmiths, University of London
Prof Annabelle Sreberny Soas, University of London
Prof Greg Philo University of Glasgow
Prof Natalie Fenton Goldsmiths, University of London
Prof David Miller Bristol University
Prof David Hesmondhalgh University of Leeds
Prof James Curran Goldsmiths, University of London
Prof Julian Petley Brunel University
Stephen Cushion Cardiff University
Jason Hickel Goldsmiths, University of London
Einar Thorsen Bournemouth University
Mike Berry Cardiff University
Tom Mills Aston University
Jenny Manson Jewish Voice for Labour
Leah Levane Jewish Voice for Labour
Lindsey German Stop the War Coalition
Mike Cushman Free Speech on Israel
Glyn Secker Jewish Voice for Labour

—

Image result for media bias uk

Britain has one of the most concentrated media environments in the world, with 3 companies in control of 71% of national newspaper circulation and 5 companies in command of 81% of local newspaper titles.

The Media Reform Coalition has conducted in-depth research on the controversy surrounding antisemitism in the Labour Party, focusing on media coverage of the crisis during the summer of 2018.

The coalition say: “Following extensive case study research, we identified myriad inaccuracies and distortions in online and television news including marked skews in sourcing, omission of essential context or right of reply, misquotation, and false assertions made either by journalists themselves or sources whose contentious claims were neither challenged nor countered. Overall, our findings were consistent with a disinformation paradigm.

We use the concept of disinformation to denote systematic reporting failures that broadly privileged a particular political agenda and ideological narrative. This does not mean that these failures were intentional or that journalists and news institutions were inherently biased. We recognize, for instance, that resource pressures combined with acute and complex controversies can foster particular source dependencies or blind spots.

Nor does our research speak in any way to allegations of smear tactics. To interrogate the root causes of disinformation would necessitate a far more wide-ranging study than was undertaken here. We start from the well-founded assumption that concerns about antisemitic hate speech within the Labour Party are genuine and not necessarily or entirely misplaced. There have been unambiguous examples of racist discourse invoking holocaust denial, generalized references to Jews in stereotyped contexts, and critiques of Zionists or Zionism that explicitly use the terms as proxies for Jews. Some of these cases have involved holders of official positions within the party, including local councilors.

Alongside such cases, there is a contested category of discourse that may be considered offensive or insensitive but not necessarily racist. Indeed, determining what counts as antisemitism lies at the heart of the wider controversy that has been played out in reams of column inches and air time since 2015, and with particular intensity during the spring and summer of 2018. We reserve judgement on this central point of contention but acknowledge legitimate views on both sides, as well as a spectrum in which relatively extreme and moderate positions are easily identifiable.

We recognize that this controversy – on the surface at least – involves prominent voices in a minority community accusing a major political party of harbouring racism directed towards them. What’s more, these voices have been vocally supported by many high profile Labour MPs. In such circumstances we expect journalists to take these concerns seriously, view them as inherently newsworthy, and not necessarily afford equal time and attention to contesting views. It is also important to stress that journalists must be allowed – on occasion – to get the story wrong: the public interest is never served by an overly cautious press.

But we do expect professional journalists to strive for accuracy, to establish essential contextual facts in any given story, and to actively seek out dissenting or contesting opinion including, in this case, within the minority group in question, within other affected minorities, and amongst relevant experts (both legal and academic). Nor do the particular complexities and sensitivities absolve journalists of their responsibility to offer a due right of reply to the accused or to interrogate contentious claims made by sources on all sides.

Overall, we found 95 clear cut examples of misleading or inaccurate reporting on mainstream television and online news platforms, with a quarter of the total sample containing at least one such example. The problem was especially pronounced on television – which reaches far wider audiences by comparison – where two thirds of the news segments on television contained at least one reporting error or substantive distortion.“

You can read the rest of the Media Reform Coalition’s report here

Antisemitism and the Labour party – a deeper look (cont) – Jewish Voice for Labour

Journalism in the UK is under threat from a repressive, authoritarian government

Disability campaigners & organisations meet with Labour ministers to discuss devastating impacts of government’s draconian disability policies

September 16, 2018February 12, 2019 · 12 Comments ·

The group meeting at Portcullis House, Westminster.

On Wednesday, many of the disabled campaigners, researchers and organisations that have played a key role in exposing the discrimination and harm caused by the government’s social security reforms travelled to Westminster to attend a meeting with five Labour shadow ministers. The meeting was chaired by Shadow Chancellor John McDonnell.

The original idea for a meeting of politicians, activists and researchers had come from Black Triangle’s John McArdle, who had put the idea to John McDonnell.

The meeting was conducted under the Chatham House rule, so although the contributions made during the meeting may be reported, the names of those who spoke and their organisations cannot, unless they spoke afterwards, specifically adding comment on record. I was permitted to report the names of the five shadow ministers who attended.

Other ministers participating were Margaret Greenwood (Shadow Secretary of State for Work and Pensions), Marsha de Cordova (Shadow Minister for Disabled People); Mike Amesbury, (Shadow Employment Minister) and Lyn Brown, (Shadow Treasury Minister, with responsibility for social mobility).

This initial meeting is to be the launch of a series of campaigning efforts and consultation between the Labour party, disabled activists, researchers and allied organisations. Labour is also hoping to secure support from members of other political parties in the longer term.

A second meeting is set to take place later this autumn.

The discussion was particularly focused on the harm, psychological distress and deaths caused by the controversial work capability assessment (WCA), but concerns were also expressed around the table about the damage caused to disabled people by the government’s roll out of universal credit. Some of us had also submitted work in advance of the meeting and contributed to shaping the agenda.

Other crucial concerns were raised about the ongoing problems with personal independence payment (PIP), the harm caused by the welfare conditionality regime and sanctions, and the cuts to social care support. There was also discussion about the cumulative impact of the government’s reforms on disabled women.

There was discussion about the importance of putting the government’s reforms into an ideological and historical perspective, which highlighted how successive governments have been strongly influenced by the US insurance industry, which had led to disabled people seeking support “to be treated as bogus claimants”.

Added to this are criticisms of how the biopsychosocial model of disability, notions of ‘the sick role’ and ‘behavioural medicine’ have provided an underpinning ideology and veneer of political credibility to justify the steady and incremental dismantling of lifeline welfare support for disabled people.

One key commentator on this subject added “The WCA was brought in to destroy public confidence in the welfare state.”

Linked with this was concern raised at the continuing roll-out of the Improving Access to Psychological Therapies (IAPT) programme, which has led to mental health professionals to “come out with the sort of language we are hearing from the Department for Work and Pensions”.

One contributor told the meeting: “You can’t divorce what’s happening in DWP with what’s happening in psychiatry.”

She also added that the approach by IAPT practitioners, who largely draw on the Cognitive Behaviour Therapy (CBT) model, is tantamount to political gaslighting, since it blames the victims of circumstances that caused at a structural level, and are therefore beyond an individual’s control. The government’s ideological claim that ‘work is a health outcome’ has also been embedded in IAPT practices and aims, despite there being very little evidence that employment is generally beneficial to people with mental health problems. Evidence has emerged that some kinds of employment are in fact further damaging to mental health.

There was also a call for nurses and GPs to be held to account for the way they had compromised their own medical ethics in dealing with requests for evidence to support disability benefit claims and in acting in the role of assessor for private contractors.

There was a little dispute regarding precisely where the focus should lie concerning the work capability assessment, with some people feeling quite strongly that our aim should be simply to see it abolished. The Labour party are committed to scrapping the highly controversial assessment process, but it was recognised that it’s highly unlikely the current government will do the same. One activist told the meeting that there was a need both for “harm reduction”, to address the immediate problems with the assessment process, and “system change” to secure the eventual abolition of the WCA altogether.

He pointed out: “Saying ‘change the WCA right now’ is not saying ‘keep the WCA’, it is saying ‘stop it killing so many people’.”

Several contributors said that the government had made a deliberate attempt to create a “hostile environment for disabled people”.

The meeting was broadly welcomed by disabled activists. Shadow chancellor, John McDonnell, added afterwards that he believed the meeting could herald the start of “a significant movement to expose the brutality of the system” and secure “permanent change”.

There were representatives present from many of the disabled-led grassroots organisations who have campaigned for many years against the Conservative’s punitive reforms and the disproportionate targeting of the disabled community with austerity measures. There were also researchers, union representatives and journalists gathered together to add to the discussion and to contribute in planning a response to the government’s persistent denials that there is a correlation between their policies and serious harm.

McDonnell told journalists after the meeting: “I think this is a breakthrough meeting in terms of getting many of the relevant organisations and individuals together who have their concerns about what is happening to disabled people and their treatment in the welfare system.

“I think it is the start of what could be a significant movement to expose the brutality of the system, but more importantly to secure permanent change.”

Marsha de Cordova, the shadow minister for disabled people, said that it was the first time that the various groups had been brought around the same table to talk about different issues – including crucial concerns about the imminent “migration” from benefits such as employment and support allowance onto universal credit – that all fed into the idea that the government had created a “hostile environment towards disabled people”.

She said: “It is good that we are talking about it. It’s great that we are bringing people around the table, and mainly disabled people.”

The meeting has consolidated new momentum and hopefully, a unity to our diverse and ongoing campaigns against the mounting injustices surrounding the welfare reforms, austerity, the fatally flawed Work Capability Assessment, welfare conditionality and sanctions, the targeted cuts embedded in Personal Independent Payment and universal credit.

We will be challenging the government’s persistent denial of a ‘causal link’ between their draconian welfare policies and the distress, systematic human rights violations, serious harm and deaths of disabled people that have arisen in correlation with those policies. Unless the government permit an independent inquiry into the terrible injustices that have followed in the wake of the welfare reform acts, they cannot provide evidence to support their own claims.

Labour’s Disability Equality Roadshow comes to Newcastle

Nothing about you without you – the Labour party manifesto for disabled people

Meet Liam and Michelle. It’s time to listen to the voices of homeless people about the fatal flaws of Universal Credit

September 15, 2018January 15, 2019 · 13 Comments ·

Related image

On Wednesday, I travelled down to Westminster to meet with John McDonnell, Margaret Greenwood, Mike Amesbury and Marsha de Cordova and a group of disability rights campaigners, journalists, researchers and organisations. One of the issues we discussed during the meeting was the harm and distress that the roll out of Universal Credit is creating for some of our citizens.

I got back from my trip to the Commons, arriving by train back in Newcastle around eleven, I missed the last bus back to Durham. Outside of the train station, I met Liam, a young homeless man, and his partner, Michelle.

Liam told me that the couple became homeless because of the inbuilt failure of Universal Credit to support people both in and out of work. Liam took some temporary work over last Christmas, and was promised that there would be full-time posts in the new year. However there was no full-time work available, and Liam explained that although they had claimed Universal Credit over this period, the couple didn’t receive any support at all. As the work was part-time and the pay was low, Liam and his partner ran up rent and council tax arrears very quickly, as they could not afford to meet their basic living costs.

When Liam’s part-time work ended, he was told at the job centre that he had to start a new Universal Credit claim. Yet government ministers have assured us that this doesn’t happen. It was during this time that the couple ended up with arrears which led to their eviction. The housing association that the couple rented their flat from significantly pressured Liam into signing an eviction order that was effective immediately. The couple lost most of their belongings as well as their home.

Liam told me “Once this happens, it is so hard getting out of the situation”. He explained to me that when they became homeless, the couple were told at the job centre that they could no longer claim any welfare support, because they have no fixed abode. (*See below.)

The situation has quickly spiralled downwards. Liam also said that many people are just one pay cheque away from homelessness, but they don’t realise that until it happens to them.

As Liam and Michelle are originally from another regional city, they cannot access Newcastle Crisis for help. Michelle has PTSD, she cannot access any support for her mental health conditions, and Liam is understandably worried about her safety and mental wellbeing on the streets. It struck me how very much they both cared deeply for each other

I made sure they have some accommodation for tonight, at least. I’m not well off but gave them what I had. Liam told me he hasn’t slept for several nights, because he has to keep Michelle safe. They have to pay £15.50 for a temporary room for the night. That is the only available help they can access. As the couple cannot claim any welfare support, the fact that temporary accommodation costs them money, and of course they need to eat, leaves them with no choice whatsoever but to beg. They do access ‘People’s Kitchen’ in the city, too. But although it helps in providing food sometimes, it isn’t adequate provision for people who are homeless 24/7.

What struck me most about this couple is how friendly and humble they were, and that they are both such lovely people. One word that kept cropping up over and over in my dialogue with them was ‘invisible’. Our whole society looks the other way. Liam told me it is always assumed that homeless people are substance abusers, yet neither Liam nor Michelle drink alcohol or use drugs. It’s distressing enough to end up homeless without the additional prejudices and stigma attached to it.

I also witnessed first hand how the local police are trying to clear the streets and prevent begging. They are prosecuting homeless people. I was asked by a policeman how long I was planning on interviewing Liam and Michelle, but what he really meant was ‘How long are you going to provide an excuse for them to be here?’

Often, anti-social behaviour powers are used to ban activities often associated with rough sleeping, and concerns have grown that an increase in the use of these powers is criminalising homelessness and is not addressing the root cause of the problem.

Begging is also an offence under section 3 of the Vagrancy Act 1824 (as amended). It is a recordable offence. The maximum sentence is a fine at level 3 on the standard scale (currently £1000). I’m wondering how people that cannot afford a roof over their head and need to beg for food would manage to somehow produce money to pay a fine.

Other provisions also criminalise ‘begging behaviour’: wilfully blocking free passage along a highway is an offence contrary to section 137 of the Highways Act 1980 (as amended), punishable by a level 3 fine. Using threatening or abusive words or behaviour is an offence under section 5 of the Public Order Act 1986, which also carries a level 3 fine.

Voluntary sector organisations have voiced concerns that the use of anti-social behaviour powers to tackle rough sleeping is criminalising homelessness and leaving vulnerable people in an even more marginalised position. According to Liberty, a Human Rights organisation, “PSPOs don’t alleviate hardship on any level. They are blunt instruments which fast-track so-called “offenders” into the criminal justice system”. Liberty has urged the Government to rethink these powers: “handing hefty fines to homeless people … is obviously absurd, counterproductive and downright cruel”.

There is also a concern that enforcement activity in one area simply displaces street activity to another geographical area, and can sometimes lead to the displacement of activity (e.g. from begging into acquisitive crime). Moreover, it does not address the underlying causes of rough sleeping.

There was a notice up on the train station door that said begging is illegal. Liam has been prosecuted twice under section 35, and a dispersal order was served on him, preventing him from returning to the area for 48 hours. The policeman was stiffly polite, but he hovered around waiting for me to leave, which was a little intimidating. I told him I would hold conversation with whoever I chose to. I felt that Liam and Michelle were being harassed.

It was a stark contrast to the experience of homeless people outside of King’s Cross station that I witnessed. While I was chatting to them, a charity group arrived with a table and some food, which was set up right outside. The policeman there was friendly with the homeless group and chatted to them, while they ate their meal.

Prior to becoming homeless, Liam had no criminal convictions. Now he has been criminalised for begging because he is homeless. He also told me he stole food on one occasion from the shop Greggs because the couple were starving. They seldom have enough food to get by, and the impact of hunger on their health is a major concern.

Health care for homeless people is a major public health challenge. Homeless people are more likely to suffer injuries and medical problems from their lifestyle on the street, which includes poor nutrition, exposure to the severe elements of weather, and a higher exposure to violence (robberies, hate crime, beatings, and so on). Yet at the same time, they have little access to public medical services or clinics, in part because they often lack identification or registration for public health care services. There are significant challenges in treating homeless people who have psychiatric disorders because clinical appointments may not be kept, their continuing whereabouts are unknown, their medicines may not be taken as prescribed and monitored, medical and psychiatric histories are not accurate, and for other reasons.

Yet despite the fact that the couple have had no support at all, Liam has gone into the job centre and local library pretty much every day to look for work. He has finally found a painting and decorating job, which he starts on Monday. Imagine just how difficult it is to do this without access to a regular bed, clean clothes and washing facilities.

Article 25 of the Universal Declaration of Human Rights, adopted 10 December 1948 by the UN General Assembly, contains this text regarding housing and quality of living:

“Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.”

As a society, we seemed to have forgotten this fundamental human right in the punitive political era of citizen ‘responsibilities not rights’. But I have yet to see a homeless person successfully punished out of being homeless.

Prior to 1983, the term homeless implied that economic conditions caused homelessness. However, after 1983, under the neoliberal regime of Margaret Thatcher, conditions such as alcoholism and mental illness also became associated with the term in the media. This narrative was often backed up with testimony made by high-ranking Conservative officials. Yet one of the major causes of home;essness is a lack of sustainable employment and adequate wage levels.

This stigmatising approach rested on the notion that the people who are sleeping on the streets are those who are homeless by choice. I have no idea how this narrative of blaming the victims of neoliberalism gained traction, but somehow it has. It is being used to drown out the voices of those that have been failed by dismal neoliberal policies.

This claim – that homelessness is about ‘personal choice’ and an individual’s cognitive and psychological condition, untethered it from the broader structural context, and in particular, from the New Right’s neoliberal reforms sweeping through the socioeconomic system. In the broader sense, it tended to portray homelessness as something that would exist even under the best economic conditions, and therefore independent of economic policies and economic conditions.

Homeless people may find it difficult to vote as they have no fixed address, they may not have identification documents, or a mailbox. However, equal access to the right to vote is crucial in maintaining a democracy.

One effect of the political and media stigmatising and dehumanising project has been a total social exclusion. Homeless people experience a profound isolation. This gives the homeless community no say in how things are. Neither government nor wider society listen to them or consider their accounts of their experiences.

Yet we can’t claim to live in a democracy when increasing numbers of citizens facing destitution and living in absolute poverty are excluded politically, economically, culturally and socially.

The only way that things will ever change for the better is if we do listen. And hear about the lived experiences of Liam, Michelle and the growing numbers of others who have been made destitute by a broken system.

*It’s important that people know they are still eligible for Universal Credit if they become homeless.

If you are told you are not at the job centre, you should challenge this.

Justin Tomlinson, minister for family support, housing and child maintenance, says:

“There is some confusion around whether or not homeless people can claim Universal Credit.

“I would like to reassure people that support is available, and it’s incredibly important that people who are homeless – whether they’re rough sleeping, sofa surfing or living in temporary accommodation – should, and are able to, receive this support.

1. People can receive Universal Credit without an address

Usually when a person makes a claim for Universal Credit, they are asked to provide an address to register their claim to.

If a person doesn’t have a fixed address they can register their hostel or temporary accommodation as their address, and if they’re rough sleeping they can use the job centre address.

2. People don’t need ID to receive Universal Credit

Undoubtedly, having ID makes the process of applying for Universal Credit simpler and quicker but in cases where a person doesn’t have ID, work coaches can use other methods to identify a person and help them make a claim.

This isn’t just for people who are homeless, but could be used in other situations as well, such as for people who have lost belongings in a fire or flood, or if they’re fleeing domestic violence.

3. You don’t need a bank account to receive Universal Credit

Having a bank account is important, and it makes it easier for people to make payments, manage money and get into work.

But we understand that a homeless person may not necessarily have a bank account. There are measures in place to make payments through other methods, including post office accounts or the Payment Exception Service, and a work coach can help people through the process of setting up a bank account when appropriate.

4. Finding a home is prioritised over finding work

You can ask Job centre staff to apply an ‘easement’ of up to one month, which means a person is not asked to look for work during this period and can focus on finding suitable accommodation.

Work coaches have the discretion to extend the easement period further, depending on a person’s circumstances.”

If you are told that you can’t claim Universal Credit because you are homeless or have “no fixed abode”, tell the job centre advisor that:

Justin Tomlinson, minister for family support, housing and child maintenance, has said you CAN.

—

Liam and Michelle, if you are reading this, wishing you the very best, and good luck with your new job, Liam. Hoping that it will help you secure somewhere to live quickly. x

Please don’t just walk on by, we are better than this

Government backs new law to prevent people made homeless through government laws from becoming homeless

From the abstract to the concrete: urban design as a mechanism of behaviour change and social exclusion

Conservative MPs accuse citizens of ‘scaremongering stories’ about experiences of Universal Credit.

I don’t make any money from my work. But you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.

John McDonnell attacks Tory disability cuts and vows to address suicides linked to welfare reforms

September 11, 2018September 11, 2018 · 14 Comments ·

On Wednesday I am travelling down to Westminster. I have been invited to attend a meeting chaired by Labour’s shadow chancellor, John McDonnell. Welfare experts, researchers and campaigners are to contribute to a new drive to expose the mental health impacts and other harms linked with the government’s controversial reforms, such as the Work Capability (WCA) and Personal Independence Payment (PIP) assessments.

We will also explore and identify the wider impacts of the government’s Employment and Support Allowance (ESA) policies on the economy and society.

The Labour party is committed to scrapping the fundamnetally flawed assessments, and have placed equalities at the centre of Labour party economic research through cross-departmental and multi-disciplinary collaboration. A Labour government will also undertake a specific stock-take of welfare policy and benefit sanctions to address the rising number of suicides, which have soared in recent years. The Labour party have said that they will place equalities at the centre of Labour’s economic research through cross-departmental and multi-disciplinary collaboration.

Speaking to the Huffington Post, the shadow chancellor says that he became furious during a Parliamentary debate when he demanded a comprehensive assessment of the cumulative impact of welfare reforms on disabled people and the government refused. He praised the website Calum’s List, which details the cases of at least 60 deaths linked to welfare cuts.

He added: “We said to the Government we know now from Calum’s List, listing people from reports in the press and elsewhere of people committing suicide as a result of Government cuts.

“We knew the Government were monitoring some coroners’ reports and we wanted them published, [then DWP minister Esther] McVey wouldn’t and I got really angry.”

“Next week, what we are doing is getting a group of campaigning organisations and a group of experts together to talk about the way in which Work Capability Assessments are still having an impact, to try to get to the bottom in terms of mental health and suicide.”

McDonnell added that Labour’s first Queen’s Speech include legislation “making sure we have a welfare and benefit system that lifts people out of poverty”.

He said that his Hayes and Harlington constituency casework now operates an open-door system four days a week due to demand from people hit by government cuts.

He added: “Helen who runs my office said the casework now is on a scale and a depth of suffering that we’ve never seen before. And this in a constituency with the [Heathrow] airport, high levels of employment but wages not matching the housing costs and the pressure on people working all hours just to keep a roof over their heads.

“If anything goes wrong they fall out of the system. Last month we were dealing with two families living in cars. We also have the ‘beds in sheds’ phenomenon, families living in a shed or garage rented out to them, it’s staggering really.

“Before this last eight years, those sort of horrendous situations would be infrequent but you wouldn’t have someone so heavily sanctioned. The sanctions often impact on people with mental health conditions hardest.”

The Labour party’s track record of inclusion and democratic consultation with disabled citizens and their communities contrasts starkly with the Conservative’s exclusionary ‘we know better than you’ approach to disability policies. The government have imposed cuts on disabled people, acting upon them as if they are objects of policy rather than being citizens within a democracy.

Government policies are expressed political intentions regarding how our society is organised and governed. They have calculated social and economic aims and consequences. In democratic societies, citizens’ accounts of the impacts of policies ought to matter.

However, in the UK, the way that welfare policies are justified is being increasingly detached from their aims and consequences, partly because democratic processes and basic human rights are being disassembled or side-stepped, and partly because the government employs the widespread use of linguistic strategies and techniques of persuasion to intentionally divert us from their aims and the consequences of their ideologically (rather than rationally) driven policies. Furthermore, policies have more generally become increasingly detached from public interests and needs.

McDonnell was involved in the setting up of Disabled People Against the Cuts (DPAC). Furthermore, after a nationwide round of consultations with disabled people about policies which enshrine the Equality and Human Rights acts, led by Debbie Abrahams, the Labour party wrote a manifesto, outlining policies for disabled people, called Nothing about you without you .

Alex Cunningham, me, Debbie Abrahams and Gail Ward after the Disability Equality Roadshow in December, 2016.

The government have persistently refused to acknowledge that there is a ‘causal link’ between their punitive welfare policy programme – which has seen vulnerable citizens, including many disabled people, lose their lifeline support – and has been correlated with the rise in distress, suicides, harm and premature mortality among ill and disabled people in particular.

The correlation has consistently been recognised by disabled citizens, and evidenced by researchers, charities and disabled peoples’ organisations over the last few years. Although correlation is not the same thing as ‘causation’, it quite often implies a causal relationship. The problem is that the government have simply refused to investigate the established association further, choosing to simply deny the established link exists instead. That is completely unacceptable.

Without further investigation of the many concerns raised, the government have no evidence whatsoever to verify their own claims of there being ‘no causal link’ precisely because they consistently refuse to conduct an inquiry regarding the established correlation between policies and harm, or to undertake a cumulative impact assessment of those policies.

The UN Convention on the Rights of Disabled Persons (CRPD) says (in article four) that governments must, in implementing the convention, “closely consult with and actively involve persons with disabilities… through their representative organizations”. It also says (article 33) that “civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully” in monitoring the implementation of the convention in each country. In July, Sarah Newton, the minister for disabled people, refused to meet a coalition of disabled people’s organisations, in an apparent breach of the UN disability convention.

At the very least, Newton shows no inclination whatsoever to listen to the accounts of the lived experiences of disabled people, nor does she value a democratic dialogue with us. That is profoundly worrying.

In July, the Shadow Disabilities Minister, Marsha De Cordova, also once again raised in parliament the fact that the United Nations (UN) had found “grave and systematic violations of disabled people’s rights” in the UK.

The Labour MP added: “This government’s policies have created a hostile environment causing grave violations on disabled people.”

Newton responded by claiming “it’s ‘not true’ that disabled people face a hostile environment.” She also asked the opposition not to say “things” that they “know are not true”.

The United Nations (UN) and the Equalities and Human Rights Commission have already verified the truth of the statements, presented many times by Labour shadow ministers, disability charities and disabled people to an indifferent government.

However, the Conservatives have a track record of denying empirical findings that don’t match their predetermined and ideological expectations. They simply deny and dismiss any criticism of their discriminatory policies. Damian Green, the Work and Pensions Secretary at the time of the UN inquiry report, famously claimed that cuts to support for disabled people did “not necessarily mean worse outcomes.” That is a bit of a climb down to previous claims from the government that cuts to lifeline support for disabled people ‘help’ them into work by removing the ‘perverse incentives’ of provision.

In July, in a rather frightening and repressive, authoritarian outburst, Newton went on to claim that the opposition’s comments were “dangerous” and “deter” people who need support from claiming it. However, it is government policies that are dangerous, and that have created a series of ordeals and barriers in the assessment process, designed to weight the assessments towards permitting the Department for Work and Pensions (DWP) to refuse people support.

Much of Newton’s response to legitimate criticism entails rationalisation techniques that are designed to undermine the credibility of the accounts of others and especially that of the narrator by editing the narrative, and presenting an alternative order of events. More broadly, the right wing media took up this role on behalf of the government, in scapegoating and stigmatising disabled people and others who need social security support, in advance of the welfare reform act. By portraying disabled people as ‘fakes’, ‘scroungers’ and as an ‘economic burden’, this rhetoric was designed to create folk devils, and to justify punitive cuts to ‘undeserving’ disabled people.

Many of us have been through the ordeals that claiming ESA entails and then faced further ordeals confronting mandatory reconsideration and appeal.Many of us have been deterred from claiming PIP. That was my own experience too. Despite needing PIP from 2011, I couldn’t face claiming PIP until I really had to. I put it off for seven years because my experience of the ESA assessments was so horrible and distressing, it made me seriously ill, because the stress exacerbated my symptoms. (I have lupus). My local authority supported me with the claim when they provided aids and adaptations to help my mobility in my home.

Conservative ministers conveniently overlook the fact that many disabled people have worked and contributed to the UK’s social security provision via tax and through the national insurance system. I worked for many years until I became too ill to do so in 2010.

Newton went on to say: “We have very strong protections for people with disabilities in our country.”

Newton even had the cheek to cite Labour’s Equality Act as a ‘protection’ for disabled people, as if it was the Conservatives who designed this policy. This is same Act that the government has violated over and over because of their welfare ‘reforms’ and austerity programme. This protection was brought about by the last Labour government, which also included the Human Rights Act, and signing the UK up to the Convention on the Rights of Persons with Disabilities (UNCRPD) – an international human rights treaty intended to protect the rights and dignity of persons with disabilities.

The UK’s established human rights and equality frameworks have been methodically ignored by this government, who decided to target disabled people with a significantly disproportionate burden of their ideological austerity programme. The UN found that the Conservatives’ treatment of disabled people gravely and systematically violates our human rights. The evidence gathered by the UN came from disabled people’s accounts (including mine) and those of disability organisations, academic researchers and charities.

This is a government that has systematically marginalised disabled people economically socially and politically, sidestepping human rights and equality legal frameworks. Apparently the government doesn’t regard democratic accountability to disabled people as particularly important. Instead, ministers simply lie and deny other people’s experiences and accounts.

Newton also shamefully suggested people losing their motability cars, scooters and wheelchairs should complain to the Motability charity – not the government. It’s not the charity that are creating a hostile environment for disabled people, carrying out assessments that are absolutely unfit for purpose. It is not the charity’s fault that assessments are inaccurate and designed to ensure as few people as possible are given a full PIP award.

This is a repressive, opaque, unaccountable and profoundly undemocratic government that simply refuse to accept any responsibility for the consequences of their own actions.

If the government genuinely believed that there is no causal link whatsoever between their cuts, extremely punitive policies and the distress, harm, increased suicide rate and deaths of disabled people, surely the way to provide evidence of their claim is to permit an independent investigation, and to undertake a thorough cumulative assessment of their policies.

Instead, it seems blunt denials and techniques of neutralisation are the government’s prefered response to legitimate criticism and serious concerns regarding the welfare and wellbeing of disabled people in the UK.

Techniques of neutralisation:

These are strategies often used to switch off the conscience when someone plans or has done something to cause harm to others. They most often entail rationalisations of denial.

The idea of techniques of neutralisation was first proposed by criminologists David Matza and Gresham Sykes during their work on Edwin Sutherland’s Differential Association in the 1950s. Matza and Sykes were working on juvenile delinquency, they theorised that the same techniques could be found throughout society and published their ideas in Delinquency and Drift, 1964.

They identified the following psychological techniques by which, they believed, delinquents justified ‘illegitimate’ or morally unacceptable actions, and Alexander Alverez further identified these methods used at a socio-political and psychological level in Nazi Germany to attempt to “justify” the Holocaust:

1. Denial of responsibility. The offender(s) will propose that they were victims of circumstance or were forced into situations beyond their control.

2. Denial of harm and injury. The offender insists that their actions did not cause any harm or damage.

3. Denial of the victim. The offender believes that the victim deserved whatever action the offender committed. Or they may claim that there isn’t a victim.

4. Condemnation of the condemners. The offenders maintain that those who condemn their offence are doing so purely out of spite, ‘scaremongering’ or they are shifting the blame from themselves unfairly.

5. Appeal to higher loyalties. The offender suggests that his or her offence was for the ‘greater good’, with long-term consequences that would justify their actions, such as protection of a social group/nation, or benefits to the economy/ social group/nation.

6. Disengagement and Denial of Humanity is a category that Alverez added to the techniques formulated by Sykes and Matza because of its special relevance to the Holocaust. Nazi propaganda portrayed Jews and other non-Aryans as subhuman. A process of social division, scapegoating and dehumanisation was explicitly orchestrated by the government.

This also very clearly parallels Gordon Allport’s work on explaining how prejudice arises, how it escalates, often advancing by almost inscrutable degrees, pushing at normative and moral boundaries until the unthinkable becomes tenable. This stage on the scale of social prejudice may ultimately result in genocide.

Any one of these six techniques may serve to encourage violence by neutralising the norms against prejudice and aggression to the extent that when they are all implemented together, as they apparently were under the Nazi regime, a society can seemingly forget its normative rules, moral values and laws in order to engage in wholesale prejudice, discrimination, exclusion of citizens, hatred and ultimately, in genocide.

I’m not comparing what is happening to disabled people in the UK with the Holocaust, though it is worth noting that disabled people were among the first group that were murdered by the Nazis. What I am saying is the techniques used to exclude, and to normalise the political oppression of a group, are the same. They are also used as a form of ‘norm default setting’ to desenisitise the public to the circumstances and experiences of groups being politically targeted with discriminatory and oppressive treatment.

In accusing citizens and the opposition of ‘scaremongering’, the Conservatives are denying responsibility for the consequences of their policies, denying harm, denying distress; denying the victims and condemning the condemners.

A spokesperson for the Department for Work and Pensions said: “Suicide is a complex issue and our sympathies are always with those left behind, but it’s misleading to link it to welfare reforms.

“We continually review and make improvements where needed, for example strengthening the Work Capability Assessment service by stopping reassessments for those with the most severe and lifelong conditions, and introducing video recording in PiP assessments.

“We are committed to ensuring people get the support they need, and to improving lives. Decisions for PiP and ESA are made following consideration of all the evidence, including from someone’s doctor or medical specialist. Meanwhile sanctions are only applied in a small minority of cases when someone fails to meet their agreed requirements.”

Earlier this week the government stressed that it was committed to ensuring that disabled people get the support they need.

We don’t agree.

For many of us, the government’s approach to social security has become random, controlling and an unremitting Orwellian trial.

I don’t make any money from my work. But you can make a donation if you wish and help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you.

Charity survey shows three-quarters of adults in England back free personal care for over-65s

September 8, 2018 · 8 Comments ·

An older people’s charity, Independent Age, is calling for free personal care for all those who need it in England, who are aged 65 and over, to help address the social care crisis. In a new survey conducted by YouGov, exclusively for Independent Age, the majority of adults in England said they would support paying more in tax or a lump sum to fund free personal care.

Independent Age has released a new report, A Taxing Question: How to pay for free personal care, produced in conjunction with Grant Thornton UK LLP and The Social Market Foundation, which looks at various funding options for social care, including what they would cost the individual and what the funding situation might look like in 10 years’ time.

The YouGov poll of more than 2000 English working-age adults from a UK-wide sample, showed that almost three-quarters (74%) of adults in England support free personal care for everyone who needs it, with more than two-thirds of adults in England (69%) agreeing that they would be willing to pay more tax to provide free personal care for all, either through a small increase in Income Tax (27%), a small increase in National Insurance (25%), a new small tax for people aged between 40 and retirement age (11%) or paying a lump sum on retirement (6%). This high level of support is consistent across the political spectrum and demographic groups based on, gender, age and region.

Some of the most viable options discussed in the report include increasing Income Tax and increasing National Insurance, these two options had the most support in the poll. Other options that would be viable include asking everyone between the ages of 40 and retirement age, and their employers, to pay a new small tax; or asking those who can afford it to pay a lump sum of £30,000 on retirement.

Looking at increasing all rates of Income Tax as an example, this would:

Generate an extra £6.10 billion in 2020/21 if raised by just 1%
Be able to provide free personal care for all in 2020/21 if raised by 1.09%
Be able to provide free personal care for all in 2030/31 if raised by 2.11%
Cost an individual earning the national average annual salary of £26,832 around an extra £12.47 a month if their Income Tax contribution was increased by 1%, which would equate to approximately £7,033 over 47 years (assuming their salary remained the same from 18 to 65).

Free personal care for all would mean providing the support a person needs for everyday activities, including things such as getting in and out of bed, getting dressed, preparing a meal or shopping. This type of care can be provided at home or in a care home, but does not include costs such as food, utilities or other expenses.

It would also simplify the system, making it easier for people to know exactly how much they’d need to pay while receiving care, and what they’d get in terms of support in return, as well as making it quicker to transfer patients out of hospital. It would also mean that no-one would have to sell their home in order to pay for care. Furthermore, the cost of introducing free personal care is only slightly more in terms of cost than the government’s proposals to deliver social care reforms.

Free personal care at home for people aged 65 and over is currently available in Scotland, which shows that it is viable proposal. It has helped to integrate the care system with the NHS, because setting up care packages is less complicated, and does not need to include discussions about income. Overall NHS costs have decreased in Scotland, delayed transfers of care have decreased, and more people are receiving care at home, allowing them to retain their independence.

A social care system that is not means-tested puts it on the same level as the NHS, and provides a more equal service for those who need it. The report has tried to address some of the issues of the still underfunded Scottish model and offer solutions for sustainable, long-term funding.

However, the report says that there are no ‘easy solutions’, with no single funding option delivering the level of reform that the public want and older people need in ten years’ time. Some funding options, including increasing business rates or Corporation Tax, increasing Council Tax or Inheritance Tax, or charging National Insurance for the over 65s, fall far short of addressing the current social care funding gap.

The report discusses how the proposed funding mechanisms would achieve both the Government’s proposed “cap and floor” model and free personal care, concluding that ultimately the difference between the costs would be relatively small in government terms – around £1 billion in 2020/21, rising to £2 billion in 2030/31 – but that free personal care would result in significant benefits for all older people. A policy of free personal care for all would also send a clear message about how we, as a country, value older people.

Janet Morrison, Chief Executive of Independent Age, says, “Many older people are being let down by a social care system in crisis that is failing to meet their needs. Giving older people the right to free personal care would change that. Not only is it what people want, but they are also willing to pay a bit more tax to get it. It is simple and costs a similar amount to the government’s preferred proposals. However, the government also needs to ensure people are getting the support they need, or the public will not tolerate contributing more in tax or other means to pay for social care.

“In addition, free personal care would significantly reduce the number of older people marooned in hospital due to lack of available personal care, support the joining-up of health and social care support and ultimately enable many more older people to live independently and stay in their own homes for longer.”

The government needs to recognise that if people are being asked to pay more, they need to be reassured that the system is better than it was, and has addressed previous failings, so that it meets the needs and expectations of older people in terms of both availability and quality.

Alex Khaldi, Partner and Head of Social Care Insights, Grant Thornton UK LLP, comments, “With public sector finances edging ever closer to a tipping point, this report marks an important contribution to the ongoing debate around the future of social care funding. Presenting the financial output of each funding option, along with the tax implications, provides a detailed picture of what should be seriously considered going forward.

“Time is running out to address the funding question surrounding the future of our struggling social care system, and it is vitally important that taxation is brought into the discussion to ensure we create a funding system that is fair for everyone. While we know there is no one easy option, this report makes it clear that many people are not adverse to the idea of increased taxation, as long as it is used as intended.

“We hope this analysis forms a useful part of the public debate to help address the growing gap between the increasing demands of a changing demographic and the funding of the system designed to support them.”

Independent Age is urging the government to introduce a social care contribution aligned to a commitment to provide free personal care, to help improve social care for older people, now and in the future. This will not only make it easier for people to navigate the system, but will also reduce NHS spending, make transfers of care from hospital faster, and will allow more people to live at home independently for longer.

It is also recommended that the government should allocate immediate funding to ensure the funding gap does not increase as a minimum. In the long-term, there needs to be a commitment within the NHS 10-year plan, and social care reforms, to radically reform public health and preventative care, to enhance older people’s independence.

Politics and Insights

Public interest issues, policy, equality, human rights, social science, analysis

Author: Kitty S Jones

Damian Hinds rebuked for misusing statistics and being conservative with the truth

Government plans to use your phone and online data to police your lifestyle and predict ‘threats’ to your health

The Care.Data scandal

The ‘business friendly’ government: deja Vu and AI

Concerns

The use of AI in surgery

Research finds ‘inaccuracies and distortions’ in media coverage of antisemitism and the Labour Party

Meet Liam and Michelle. It’s time to listen to the voices of homeless people about the fatal flaws of Universal Credit

Serious concerns about the impact of Brexit on disabled people’s human rights

Summary of concerns related to disabled peoples’ right to live independently

Summary of concerns related to the right to an adequate standard of living and social protection (article 28)

Summary of concerns related to the right to work and employment (article 27)

Summary of concerns related to prejudice and negative attitudes (articles 8 and 16)

Concerns regarding Access to justice (articles 12 and 13)

Concerns related to involving disabled people and their organisations (articles 4(3) and 33(3))

Dissemination of concluding observations and inquiry findings (article 36)

Recommendations

Share this:

Share this:

The Care.Data scandal

The ‘business friendly’ government: deja Vu and AI

Concerns

The use of AI in surgery

Share this:

The Law Society’s condemnation of the government’s Mental Capacity (Amendment) Bill 2018

A critical summary of changes from Law Commission proposals

‘A backward step’

The right to life and state compliance with Article 2 (ECHR)

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: