Coronavirus: U-turn on critical care advice for NHS amid fears disabled people will be denied treatment

‘Many autistic and learning disabled people and their families have believed that they are treated as less than human, and it certainly felt as if the guidance was confirming just that’

Shaun LinternHealth Correspondent @ShaunLintern
Wednesday 25 March 2020

Emergency guidance to help doctors decide who should get critical care during the coronavirus outbreak is being urgently re-written after a U-turn by a national health watchdog over fears it could mean disabled people are denied treatment.

The National Institute for Health and Care Excellence (NICE) had been threatened with legal action for telling doctors they should assess patients with learning disabilities, autism and other limiting conditions as scoring high for frailty.

But, following complaints from families and campaigners, NICE has said it will reissue its guidance.

NICE’s national guidance for the NHS, published on Friday, advised doctors on how to choose who gets life-saving intensive care treatment such as ventilation in the event of critical care services being overwhelmed during a surge of Covid-19 patients.

It included a frailty score that told hospitals to “assess all adults for frailty, irrespective of age and Covid-19 status” using a nine-point frailty scoring system with people “completely dependent for personal care, from whatever cause” scoring seven.

Anyone scoring higher than five was said to have uncertainty around the benefits of critical care.

Despite NICE accepting the guidance is wrong, at the time of publishing, it had yet to remove the incorrect documents from its website.

Peter Todd partner at Hodge, Jones and Allen solicitors, wrote to NICE on Tuesday demanding the guidance was withdrawn and that it made clear the original documents were wrong.

He told The Independent: “The guidance is still published on the NICE website and says that clinicians should comply with it. It would be better if they took it down and amended it before it was published again.

“You could be totally forgiven as a doctor for thinking this was still a valid policy, but they have already accepted they have made a major blunder.”

He explained that, as the guidance is currently worded, it meant young people with disabilities, autism or other mental health problems “have been classed as not to be offered critical care if required and that seems to be discriminatory and I don’t see how it can be justified. I think it is also a breach of the Human Rights Act.

“If they made clear doctors should not apply this frailty score to anyone who has autism or learning disabilities that would help, but it needs to be emblazoned on the policy. What I asked them to do was to unpublish the guidance and put a notice up to say it had been withdrawn and to consult first and republish it properly amended.”

Julie Newcombe, co-founder of Rightful Lives and whose son Jamie has autism said: “The original guidance was quite simply frightening. For a long time now, many autistic and learning disabled people and their families have believed that they are treated as less than human, and it certainly felt as if the guidance was confirming just that.

“The hastily put together clarification is welcome, but I still wonder how that will translate on the ground given that attitudes in some areas are so entrenched.”

Edel Harris, chief executive of the learning disability charity Mencap, also criticised the guidance saying: “People with a learning disability and their families are deeply troubled that the latest NICE guidance for NHS intensive care doctors could result in patients with a learning disability not getting equal access to critical care and potentially dying avoidably.

“These guidelines suggest that those who can’t do everyday tasks like cooking, managing money and personal care independently – all things that people with a learning disability often need support with – might not get intensive care treatment.”

He added it was vital NICE made clear patients should not be assessed for critical care based on their cognitive abilities.

A spokesperson for NICE told The Independent it was very aware of the concerns.

They added: “Our new Covid-19 rapid guideline on critical care was developed to support critical care teams in their management of patients during this very difficult period of intense pressure.

“The guideline says that on admission to hospital, all adults should be assessed for frailty, and that other comorbidities and underlying health conditions are also taken into account.

“The frailty scoring system is not perfect, therefore we recommend that clinicians should take any decisions about care in conjunction with patients and their carers where possible.

“We welcome the recent clarification that the Clinical Frailty Score should not be used in certain groups, including those with learning disability or with stable long-term disabilities such as cerebral palsy, which we will reflect in an updated version of our guideline.”

https://www.independent.co.uk/news/health/coronavirus-nhs-treatment-disabled-autism-nice-covid-19-a9423441.html

Welfare surveillance system violates human rights, Dutch court rules

Government told to halt use of AI to detect fraud in decision hailed by privacy campaigners

A Dutch court has ordered the immediate halt of an automated surveillance system for detecting welfare fraud because it violates human rights, in a judgment likely to resonate well beyond the Netherlands.

The case was seen as an important legal challenge to the controversial but growing use by governments around the world of artificial intelligence (AI) and risk modelling in administering welfare benefits and other core services.

Campaigners say such “digital welfare states” – developed often without consultation, and operated secretively and without adequate oversight – amount to spying on the poor, breaching privacy and human rights norms and unfairly penalising the most vulnerable.

The UN special rapporteur on extreme poverty and human rights, Philip Alston, applauded the verdict and said it was “a clear victory for all those who are justifiably concerned about the serious threats digital welfare systems pose for human rights”.

The decision “sets a strong legal precedent for other courts to follow”, he added. “This is one of the first times a court anywhere has stopped the use of digital technologies and abundant digital information by welfare authorities on human rights grounds.”

The verdict will be watched closely by welfare rights campaigners in the UK, where the government is accelerating the development of robots in the benefits system in a digitisation drive that vulnerable claimants fear could plunge them further into hunger and debt.

A Guardian investigation in October found the Department for Work and Pensions (DWP) had increased spending to about £8m a year on a specialist “intelligent automation garage” where computer scientists were developing more than 100 welfare robots, deep learning and intelligent automation for use in the welfare system.

The Dutch government’s risk indication system (SyRI) is a risk calculation model developed over the past decade by the social affairs and employment ministry to predict the likelihood of an individual committing benefit or tax fraud or violating labour laws.

Deployed primarily in low-income neighbourhoods, it gathers government data previously held in separate silos, such as employment, personal debt and benefit records, and education and housing histories, then analyses it using a secret algorithm to identify which individuals might be at higher risk of committing benefit fraud.

A broad coalition of privacy and welfare rights groups, backed by the largest Dutch trade union, argued that poor neighbourhoods and their inhabitants were being spied on digitally without any concrete suspicion of individual wrongdoing. SyRI was disproportionately targeting poorer citizens, they said, violating human rights norms.

The court ruled that the SyRI legislation contained insufficient safeguards against privacy intrusions and criticised a “serious lack of transparency” about how it worked. It concluded in its ruling that, in the absence of more information, the system may, in targeting poor neighbourhoods, amount to discrimination on the basis of socioeconomic or migrant status.

The system did not pass the test required by the European convention on human rights of a “fair balance” between its objectives, namely to prevent and combat fraud in the interest of economic wellbeing, and the violation of privacy that its use entailed, the court added, declaring the legislation was therefore unlawful. The Dutch government can appeal against the decision.

Christiaan van Veen, director of the digital welfare state and human rights project at New York University School of Law, said it was “important to underline that SyRI is not a unique system; many other governments are experimenting with automated decision-making in the welfare state”.

Van Veen cited Australia and the UK as countries where such concerns were particularly acute. “This strong ruling will set a strong precedent globally that will encourage activists in other countries to challenge their governments,” he said.

Alston predicted the judgment would be “a wake-up call for politicians and others, not just in the Netherlands”. The special rapporteur presented a report to the UN general assembly in October on the emergence of the “digital welfare state” in countries around the globe, warning of the need “to alter course significantly and rapidly to avoid stumbling, zombie-like, into a digital welfare dystopia”.

In the UK, as well as contracts with the outsourcing multinationals IBM, Tata Consultancy and Capgemini, the DWP is also working with UiPath, a New York-based company co-founded by Daniel Dines, the world’s first “bot billionaire”, who last month said: “I want a robot for every person.”

His software is being deployed in an effort to introduce machine learning to check benefit claims, which suggests welfare computers will autonomously learn and alter the way they make decisions with minimum human intervention.

https://www.theguardian.com/technology/2020/feb/05/welfare-surveillance-system-violates-human-rights-dutch-court-rules

Blue badge permits: Councils ‘must provide enough spaces’

Councils must make sure there are enough disabled parking spaces to cope with the extra demand a blue badge scheme expansion will bring, the charity Scope has said.

As of Friday, people with hidden disabilities in England are now also eligible to apply for blue badges.

Scope welcomed the move but said if spaces are scarce, the badges “are not worth the paper they’re printed on”.

The Local Government Association said councils regularly review parking.

Currently, about 2.35 million people with physical disabilities in England have a blue badge.

Blue badge holders are allowed to park in spaces which might be restricted to other drivers, for example parking on yellow lines for up to three hours, for free in pay and display bays, or in spaces designated “disabled”.

Under Friday’s change – which is the biggest shake-up of the blue badge scheme since it was introduced nearly 50 years ago – people with hidden disabilities, such as dementia, autism or anxiety disorders will also be eligible to apply for the permits.

However, not everyone with hidden disabilities will quality for a badge, as it will still be up to local councils to decide if an applicant meets the eligibility criteria.

The change has been widely welcomed by charities, including the head of the National Autistic Society, who called it a “huge relief”.

“A blue badge can be life changing,” said Tim Nicholls, from the charity, who said many autistic people are often so anxious they may find it hard to leave the house.

Ceri Smith, policy and campaigns manager at Scope, also welcomed the move, saying: “Today’s change should make a real difference for many disabled people with invisible impairments and conditions who have been shut out of the blue badge scheme to date.”

However she added: “But in order for it to work, it’s vital that councils issue blue badges to people who are newly eligible to apply.

“More also needs to be done by councils to ensure that there are enough allocated blue badge spaces near shops and amenities to meet increasing demand.”

Earlier this week, Scope responded to figures from company Confused.com claiming many UK councils in charge of parking provisions have not planned to extend their number of blue badge spaces.

Ms Smith said: “With spaces already scarce, it’s extremely worrying that so few councils have prepared for the expansion of the blue badge scheme, despite knowing it was coming for months.

Charity Disabled Motoring UK, which campaigns for disabled drivers and blue badge holders, warned the increase in demand “may undermine the entire scheme and render it not fit for purpose”.

“The end result may mean it will let down the people it was originally intended to help as well as disabled people with hidden disabilities,” it said in a statement.

“The charity predicts that when the number of blue badge holders increases from August 2019, we will be contacted more and more by disabled people who find their blue badge completely meaningless as they will be unable to find adequate parking because it will be so oversubscribed.

“We implore all local authorities and private parking operators to take this change seriously, review their disabled parking provision and stress the importance that they all enforce disabled parking properly so that disabled bays are kept free only for genuine blue badge holders.”

‘Not just councils’
Last year, 859,000 blue badge permits were issued in England, a decrease of 3.2% compared to the year before.

Earlier this year, Essex County Councillor John Spence said the new rules could lead to a 20% increase in the number of applications in Essex – putting further pressure on stretched disabled parking provision.

The Department of Transport, launching the expansion of the scheme on Friday, said councils will get £1.7m in the first year of the programme, to help with the expected spike in applications.

But it added that councils may need to review parking provision to increase the number of spaces available.

In a statement, the Local Government Association – which represents councils in England and Wales – said the availability of spaces for blue badge holders was not just down to councils as there was also “significant private provision of parking”.

“Councils know that blue badges are a vital lifeline for disabled people which help them get out and about to visit shops or family and friends and many have already been approving badges for people with non-physical disabilities,” the LGA said in a statement.

“Councils regularly review parking provision in their areas, including both public and private, in order to help meet the needs of the public, including those with blue badges.

“Overall provision will depend on private operators, council resources as well as competing demand for road space and public land.”

https://www.bbc.co.uk/news/uk-49521867

Has welfare become unfair – a new report by the Disability Benefit Consortium

Today’s report by the Disability Benefits Consortium (DBC), ‘‘Has welfare become unfair – the impact of changes on disabled people” looks at the financial impact and lived experiences of welfare reform on disabled people.

Changes to the welfare system over the past ten years have left disabled adults four times worse off financially than non-disabled adults, according to new research commissioned by the Disability Benefit Consortium.

While many people who receive welfare support have experienced cuts of an average of £300 as a result of changes to the welfare system, disabled people have typically lost around £1,200 per year.

The research funded by the Three Guineas Trust and conducted by the University of East Anglia, the University of Glasgow and Landman Economics is the first comprehensive study looking specifically at the cumulative impact of welfare changes on disabled people. The research also found:

The more disabilities you have the more you lose out, for example someone who has six or more disabilities loses over £2,100 each year on average, whereas someone with one disability loses around £700 each year
Households with one disabled adult and one disabled child lose out the most, with average losses of over £4,300 per year
As part of the research, 50 people living with a variety of conditions and disabilities were interviewed about their experiences. People said that they found the application and assessment processes highly stressful, and that they did not feel trusted, and constantly challenged.

The report also states that the current system has become so complex and dysfunctional, that many disabled people have found it has had a devastating impact on their wider health and wellbeing.

You can find the full report here.

‘Misleading’ DWP letter causing ill and disabled people to lose benefits

Advice removed for GPs to provide notes for patients challenging fit-for-work tests

Chronically ill and disabled people are being left for months without benefits because officials are sending “misleading” letters to their GPs saying they no longer need to supply medical evidence on behalf of patients who are declared fit for work.

Campaigners and MPs have called for the Department for Work and Pensions (DWP) form letter to be scrapped after it emerged claimants appealing against a fit-for-work decision were left near-destitute after their GPs refused to provide “fit notes” because they were advised they did not need to.

Claimants who challenge work capability assessment (WCA) decisions are entitled to continue to receive employment and support allowance (ESA) worth £73.10 a week while they await their appeal hearing, but to do so they must obtain fit notes from their GPs to prove they are too ill to work.

It has emerged that ministers ordered changes to the standard-issue letter to remove references that made it clear to GPs they may have to issue a medical statement if their patient wished to appeal against a WCA decision. The DWP claims this was not intended to dissuade GPs from issuing fit notes.

Raji Hunjan, the chief executive of the advice charity Z2K, said the effect of the revised letter could be devastating. “We have seen how our clients, who are seriously ill, suddenly have zero income, become reliant on food bank vouchers and loans, and face a very real threat of homelessness.”

Z2K said one of its clients, called “Louis”, was refused a fit note by his GP while appealing against a WCA decision. He ran up rent arrears and became reliant on food banks before he was eventually able to switch GPs and get the medical statement he needed to claim benefits. After an eight-month wait, he won his appeal.

Prof Helen Stokes-Lampard, the chair of the Royal College of GPs (RCGP), said the lack of clarity over when GPs should issue fit notes could put patients’ finances and health at risk. “No GP wants that, and it only serves to threaten the long-standing trust that patients have in their family doctor.”

The WCA is hugely controversial because of widespread concern over its accuracy and reliability. Nationally, 72% of claimants who appeal against their WCA decision are successful. Z2K said nine out of every 10 WCA cases it takes to appeal are successful.

Last month, there was national outrage over the case of Stephen Smith, 64, who was deemed fit for work despite suffering from multiple debilitating illnesses, having his weight plummet to 38kg (6 stone) and being barely able to walk. Smith won his appeal after waiting 12 months for a hearing.

The standard letter, called an ESA65B, is sent automatically to the GPs of all claimants who fail a WCA and are declared fit enough to work. Until 2017 the letter advised GPs that if their patient appealed against the WCA decision they must continue to provide fit notes.

However, on ministers’ orders, the letter now states that GPs “do not need to provide any more fit notes for ESA purposes”. It does not mention the possibility that the patient may appeal, or that a fit note is needed for the patient to obtain ESA payments until the appeal is heard.

Frank Field, the chair of the work and pensions select committee, raised the issue with the then disability minister Sarah Newton in January. Newton replied that the wording was amended “to make the letter simpler and clearer”, adding that DWP communications were intended to be “clear, understandable and fit for purpose”.

Field replied scathingly that the wording was “not having the desired effect”, and urged her to revise it to make clear ESA claimants on appeal were entitled to fit notes. “This simple step could greatly ease the stress and worry that people who are awaiting an appeal experience.”

A DWP spokesperson said: “These letters simply inform GPs when a claimant has been found fit for work and are not intended to dissuade them from issuing fit notes for ESA appeal purposes, to claim otherwise is inaccurate.”

However, they hinted the letter may be changed: “We are committed to ensuring our communication is clear, which is why the wording of this letter was cleared by both the British Medical Association and the RCGP. However, we will of course consider feedback when revising the letter.”

It is unclear on what basis the RCGP agreed to the new wording as the change was agreed at a DWP stakeholder meeting for which, according to the Field-Newton correspondence, there appear to be no formal minutes.

https://www.theguardian.com/society/2019/mar/18/misleading-dwp-letter-causing-ill-and-disabled-people-to-lose-benefits

 

Blue Badge (disabled parking) scheme eligibility review

Summary

Proposals to extend Blue Badge eligibility to people with non-physical conditions.

This consultation closes at
11:45pm on 18 March 2018

Consultation description
We are proposing changing the eligibility criteria for the Blue Badge scheme to include people with non-physical conditions.

This is part of the government’s objective is to ensure that those people with the greatest need have access to badges, whilst ensuring the scheme remains sustainable.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/675301/blue-badge-scheme-consultation-on-eligibility.pdf

https://www.smartsurvey.co.uk/s/R2OF6/

or

Complete a response form and either

Email to:
bluebadge.consultation@dft.gsi.gov.uk

Write to:
Vida Browne-Campbell
Department for Transport
Traffic and Technology Division
3/27 Great Minster House
33 Horseferry Road
London SW1P 4DR

https://www.gov.uk/government/consultations/blue-badge-disabled-parking-scheme-eligibility-review

Autistic boys and girls found to have “hypermasculinised” faces – supporting the Extreme Male Brain theory

By Christian Jarrett

According to the Extreme Male Brain theory of autism, there are certain cognitive and behavioural characteristics that manifest more often in men than women, on average, such as a bias for systematic rather than empathic thinking. Autism can be seen as as extreme version of that typical male profile, the theory proposes, possibly caused by prenatal exposure to higher than usual amounts of testosterone in the womb.

A related observation is that exposure to high concentrations of prenatal testosterone leads to the development of “hyper masculine” facial features. It follows that if the Extreme Male Brain theory of autism is accurate, then autistic people will have hypermasculine faces.

A new study in Scientific Reports put this logic to the test, and consistent with the Extreme Male Brain theory, found that autistic girls and boys had more masculine faces as compared with neurotypical control children.

Past research into whether autistic people tend to have stereotypically masculine facial features has been mixed. Women with sub-clinical autistic traits or a diagnosis of autism have been found to have more masculine than average faces, but studies with autistic men have sometimes found no difference from controls, or they’ve found the autistic men to have androgynous rather than hyper masculine features.

For their new paper, the research team led by Diana Tan at the University of Western Australia, deliberately sought to test pre-pubescent autistic and neurotypical children, thus removing the possibility that hormonal changes during puberty might conceal or reverse any facial signs of prenatal exposure to high testosterone levels (as may have been the case in the earlier research involving adults).

Tan and her colleagues also employed a new 3D facial mapping process, tested on 48 neurotypical boys and 53 neurotypical girls, to provide a highly accurate and objective measure of the facial features that most typify a male and female child’s face. Using these features, the researchers’ algorithm was able to correctly categorise the sex of children’s faces with around 98 per cent accuracy.

Next, the researchers deployed their 3D facial mapping algorithm to score the facial features of 54 caucasian autistic boys, 20 caucasian autistic girls and age-matched neurotypical caucasian boys and girls. This showed that the autistic boys and girls had more masculine than usual faces – to use the researchers’ jargon, their faces were hypermasculinised.

Moreover, when the researchers compared the autistic children and control children’s faces on the six facial features (mostly related to the positioning of the nose and upper lip) that most strongly distinguished neurotypcial boys’ faces from girls’ faces, the autistic kids of both sexes were found to have a more masculine score than controls on five of these features.

Finally, among the autistic boys and girls, the more masculinised their faces, the more social and communication difficulties they tended to have, as scored in their diagnostic test for autism.

The sample sizes for this study were relatively small, but the study’s biggest weakness is that it asks us to make a logical leap – high prenatal testosterone levels are known to cause faces to appear more masculine, autistic children have more masculine than average faces (as shown by the new results), therefore high prenatal testosterone levels contribute to autism (in line with the Extreme Male Brain Theory). However, as the researchers’ themselves acknowledge, this study featured no data on the testosterone levels that the children were exposed to prenatally, meaning there could be other explanations for the results. “Further investigation that tracks longitudinal links between early testosterone exposure, postnatal facial morphology and autism phenotype will provide more direct tests of the hypothesised relationships,” they said.

The Extreme Male Brain theory has inspired important research into the causes of autism, but it has also been controversial. Cordelia Fine, the author of Delusions of Gender and Testosterone Rex, cites the theory as an example of contemporary “neurosexism”. And other recent research has uncovered findings that are inconsistent with the theory – for instance, last year a brain imaging study found that, compared with male neurotypical controls, autistic boys and men had resting connectivity patterns that resembled what’s more typically seen in women, while autistic girls and women showed a more masculine neurological profile, lending support “to the notion that autistic spectrum disorder may constitute a disorder of sexual differentiation or androgeny rather than a disorder characterized by masculinization in both genders.”

 

Autistic boys and girls found to have “hypermasculinised” faces – supporting the Extreme Male Brain theory