Sweden

Disability News Service: CV-19 – Anger over ‘terrifying and discriminating’ intensive care guidance

The following article was taken from the excellent Disability News Service website, and written by John Pring. The original article can be viewed by clicking on this link. I recommend this site to all disabled people during the coronavirus crisis and beyond, as a dependable source of information. 

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New guidance for the NHS on which coronavirus patients should receive intensive care treatment has heightened fears among activists that many disabled people will be refused lifesaving treatment if they are admitted to hospital.

The guidance from the National Institute for Health and Care Excellence (NICE) says that all adult COVID19 patients should be assessed for “frailty” when admitted to hospital, and that “comorbidities and underlying health conditions” should be taken into account.

Following alarm and outrage from disabled people and allies, the government body announced late yesterday (Wednesday) that it had produced an updated guideline.

But the new version has not eased all those concerns, with one disability campaigner warning that disabled people who need support would still be less likely to receive critical care if the guideline was followed and one grassroots group of disabled people saying that it was “not reassured” by the amendments.

It was the use of the CFS “frailty” scoring system that caused most alarm, with the guideline suggesting that those with a score as low as five – those seen as “mildly frail”, who often need help with transportation, heavy housework and medication (nine represents someone who is terminally ill) – might not be considered appropriate for critical care and might be steered towards end-of-life care instead if their condition deteriorated.

The guideline said that decisions to admit patients for “critical care” should be based on how likely they were to recover.

Among those raising concerns about the original version of the new guidance was disabled actor and activist Liz Carr.

She said on Twitter that the guideline suggested she and many other disabled people would be “pretty much denied [the] same access to ventilation/critical care support as non-disabled people based on the fact we require some assistance in our daily life, because we’re disabled”.

She said this was “terrifying and discriminating”.

When NICE said it was “very aware of the concerns of some patient groups about access to critical care” and that it understood “how difficult this feels”, another disabled activist, Dennis Queen, told the organisation: “It’s not about how we feel –you are denying our human rights.

“We pay [the] same taxes for this disgraceful unequal treatment.”

Another disabled campaigner, Angela Kennedy, said on Twitter: “It’s more than ‘difficult’: it’s justified concern that discrimination against disabled people – because we need support, assistance and reasonable adjustment to live with our disablement – will drive unlawful decisions to refuse us a right to life. Your guidelines caused that.”

Greater Manchester Coalition of Disabled People told Disability News Service (DNS) last night (Wednesday) that it was “alarmed that the government – via the NICE guidance has confirmed that, when there’s competition for beds, the NHS will ration ICU care, so that many disabled people (especially elders) will be denied treatment, based on a scoring system.

“It’s also a much bigger group than those of us being told to protectively self-isolate.”

Mike Steel, from Bristol Reclaiming Independent Living (BRIL), said his grassroots group of disabled people was “highly concerned” about the NICE guideline, and the manner of its admission that the original version was flawed.

He said: “We have been shown with stark clarity the ease with which denying our most fundamental human right – the right to life –is normalised and reduced to being part of a ‘discussion’.

“We are not reassured by the amendment made to say that younger people and people with ‘stable long-term disabilities’ should not be assessed using the CFS, yet others can be.

“Categorising and dividing disabled and chronically ill people by age or personal care needs in order to decide who gets critical care is ableist and dangerous.

“The reality is, as a direct consequence of years of drastic cuts and a failure to plan by central government, frontline health staff will be put under immense and unfair pressure to make decisions about care.”

He said the guideline appeared to have been drawn up without the input of disabled people, and he added: “When we are excluded from decisions about our lives, not only are mistakes made, our very being is devalued.”

The concerns over the guideline came as more than 60 UN human rights experts, including Catalina Devandas Aguilar, the UN’s special rapporteur on the rights of persons with disabilities, warned in a statement* that action taken to cope with the COVID-19 crisis must address human rights issues and could not only be solved through public health and emergency measures.

They said: “Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government.

“The scarcity of resources… should never be a justification to discriminate against certain groups of patients.

“Everybody has the right to health.”

A disabled mother, who tweets at @Whovian242, told NICE on Twitter after the publication of the first version of its guideline: “This morning I read that according to these guidelines if I am assessed based on my care needs I won’t be eligible for critical care.

“With respect your comment ‘we understand how difficult this feels’ feels incredibly dismissive.”

Wheelchair dancer and consultant Shay Erlich added: “You have instituted a widespread tool and unleashed it for clinicians who will be making split second decisions in an overloaded system.

“Saying you have to take this advice in context in these circumstances only assures it won’t be.”

NICE said on Twitter that it accepted that the frailty scoring system was “not perfect” and so it recommended that doctors should “take any decisions about care in conjunction with patients and their carers where possible”.

It also said it welcomed clarification by the NHS Specialist Clinical Frailty Network (SCFN) that the frailty scoring system should not be used to assess certain groups, which it later said were “younger people, people with stable long-term disabilities, learning disabilities, autism or cerebral palsy”.

After publishing the updated guideline last night – following an update on using the CFS by SCFN – NICE said its new version included these clarifications and “the need to consider additional patient factors when interpreting the CFS score”.

The European Disability Forum (EDF), an umbrella organisation of disabled people across Europe, spoke out this week about reports of discriminatory medical guidance for the COVID-19 pandemic.

EDF said it was “extremely worried” about such reports coming from “some countries”.

It later told DNS that it had spoken out due to concerns raised by activists in the UK and other countries, including Sweden and Ireland.

It added: “In countries where healthcare professionals will not be able to provide the same level of care to everyone due to lack of equipment and underfunding of the healthcare sector, medical guidelines need to be non-discriminatory and follow international law and existing ethics guidelines for care in the event of disaster and emergencies.

“These are clear: persons with disabilities cannot be discriminated against.”

An EDF spokesperson added: “We believe that countries need to involve persons with disabilities and their organisations when writing these guidelines.”

Maureen Piggot, a member of EDF’s executive committee, said last night: “I welcome the clarification of the NICE guidelines, but it does not go far enough.

“The UK needs to follow the UN Convention on the Rights of Disabilities and explicitly ensure that there is no discrimination against persons with disabilities – this includes healthcare guidelines that provide equal access to life saving support.”

The Reclaiming Our Futures Alliance (ROFA) said this week that it was “deeply concerned” about the “eugenicist rhetoric that has been used to suggest that disabled people will have less access to medical treatment and equipment if they fall ill due to or during the pandemic”.

ROFA – whose members are all disabled people’s organisations and include Inclusion LondonDisabled People Against CutsThe Alliance for Inclusive EducationPeople First (Self Advocacy)Sisters of Frida and Equal Lives- called on the government to “ensure that disabled people are not discriminated against in the response to COVID-19”.

The NICE guidance added to concerns raised by last week’s DNS report about an NHS consultant who appeared to suggest in an open letter that he and his colleagues would not attempt to resuscitate many older and disabled people if they became seriously ill with coronavirus.

Cardiff and Vale University Health Board, which runs the hospital where the consultant works, has again refused to clarify his comments.

Instead, it issued a statement in which it said that every individual patient was different and that care plans “will depend on their individual circumstances where the most appropriate treatment will be offered based on their needs”, while it said the letter “was written to show the compassion and care NHS staff can offer during such a difficult period”.

*Here is the first part of the UN statement: “Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government. The scarcity of resources or the use of public or private insurance schemes should never be a justification to discriminate against certain groups of patients.

“Everybody has the right to health. People with disabilities, older persons, minority communities, indigenous peoples, internally displaced people, people affected by extreme poverty and living in overcrowded settings, people who live in residential institutions, people in detention, homeless people, migrants and refugees, people who use drugs, LGBT and gender diverse persons – these and other groups need to receive support from governments.

“Advances in biomedical sciences are very important to realize the right to health. But equally important are all human rights. The principles of non-discrimination, participation, empowerment and accountability need to be applied to all health-related policies.”

**Sources of information and support during the coronavirus pandemic include the following:

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

 

Love To Hate You

Dedicated to the usual right-wing suspects…

From Wikipedia:

Erasure (/ɪˈrʒə/) are an English synth-pop duo, consisting of singer and songwriter Andy Bell and songwriter and keyboardist Vince Clarke. They formed in London in 1985. Their debut single was “Who Needs Love Like That“. With their fourth single, “Sometimes“, the duo established themselves on the UK Singles Chart, becoming one of the most successful artists of the late 1980s to mid-1990s.

From 1986 to 2007, Erasure achieved 24 consecutive Top 40 hits in the UK. By 2009, 34 of their 37 chart-eligible singles and EPs had made the UK Top 40, with 17 climbing into the Top 10. At the 1989 Brit Awards, Erasure won the Brit Award for Best British Group.[1] They also had three Top 20 US hits with the songs “A Little Respect“, and “Always“, the highest charting US single (on the Billboard Hot 100) being their 1988 single “Chains of Love“, which hit #12 on the chart.

The duo is most popular in their native UK and mainland Europe (especially Germany, Denmark, and Sweden) and also in South America (especially Argentina, Brazil, Chile, and Peru).[citation needed] The band is also popular within the LGBT community, for whom the openly gay Bell has become an icon.[2] Erasure have penned over 200 songs and have sold over 25 million albums worldwide.[3][4]

Memory Match – 03-10-84

Throughout the 2015/16 football season I will be contributing to the Wrexham AFC matchday programme. I will be penning a feature called Memory Match, a look back at classic Wrexham games from the past that I will share in this blog over the coming months.

03-10-84

Porto v Wrexham

European Cup Winners’ Cup First Round Second Leg

Estadio Das Antas

Result: 4-3

PORTO: Borota, Joao Pinto, Lima Pereira, Eurico, Inacio, Magalhaes , Frasco, Quim, Gomes, Futre, Vermelhinho (Walsh 77)

Goalscorers: Gomes 5, 38 (pen), Magalhaes 18, Futre 61

WREXHAM: Parker, King, Cunnington, Salathiel, Keay, Wright, Williams (Gregory 23), Horne, Steel, Edwards (Muldoon 77), Rogers

Goalscorer: King 40, 43, Horne 89

Attendance: 30,000

Following our famous victory in the first leg at the Racecourse – as featured in the Altrincham programme – we continued to struggle when it came to the bread and butter of League football. Sandwiched between the two legs, a trip to Gresty Road saw Crewe Alexandra batter us 3-0 while Stockport County came out on top of a topsy-turvy battle on our own patch that we lost 3-4.

Indeed our last three League outings had seen our hapless defence concede 12 goals, although crucially Porto had been denied an away goal in north Wales. Surely the Portuguese Cup winners – who featured 14 internationals, seven of whom had been capped for Portugal against Sweden in recent weeks – would save face in front of their own fans?

After 38 minutes – played out in a ferocious storm – Porto had steamed into a 3-0 lead. Fernando Gomes scored twice, one that seemed to feature a handball in the build up and one dubious penalty given away by Parker, while Magalhaes contributed a spectacular second. The Robins were on the rack and few would’ve bet against our opponents from scoring more.

However, Wrexham had a lot riding on the result. While a modest profit was recouped from the first leg tie, this was quickly accounted for when we had to charter a special plane to Portugal costing £14,000. On top of such financial concerns we were also playing for pride, so it shouldn’t have been surprising that we refused to go down without a fight. Scottish full-back Jake King foraged forward to convert a Neil Salathiel cross on 40 minutes and just three minutes later the same player connected with a corner in a crowded area to put us ahead on the away goals rule.

In the second half it was one-way traffic with Stuart Parker being called upon to make a series of fine saves from Vermelhinho, Gomes and Magalhaes. Unfortunately, there was nothing Parker could do to stop a deflected effort from Paulo Futre on 69 minutes. Order had been restored and it seemed like plucky Wrexham were on their way out of Europe.

Parker continued to be defiant in goal as time marched on, but as the home fans began to celebrate their impending passage into the second round, Jim Steel knocked the ball out wide to substitute John Muldoon. With only 60 seconds remaining the midfielder whipped in a cross that young Barry Horne launched himself at and planted a diving header past former Chelsea goalkeeper Petar Borota.

Our tiny pocket of support – some of who had travelled on the same flight as the players at a cost of £195 per person – exploded into ecstasy.

We may have lost 4-3 on the night, but our 1-0 triumph in the first leg assured our passage on the away goals rule.

“This has to be the greatest moment of my career. I’ll tell my grandchildren about this – when I’m a grandad,” enthused captain fantastic Jake King.

Fairytales do happen.