Disabled People Against Cuts

Staying Strong and Proud! Celebrating Deaf and disabled people’s resistance



7 – 9pm

Facebook Live

with British Sign Language and live captions

On International Day of Disabled People, DPAC and the Peoples Assembly Against Austerity will be co-hosting an extended evening of politics, conversation, music and comedy to celebrate Deaf and disabled people’s resistance from austerity and welfare reform to Covid-19 and beyond.

With speakers including: Cherylee Houston (actor), Touretteshero (comedian and campaigner), John McDonnell, Paula Peters (DPAC) and Ellen Morrison (Disabled members’ representative, Labour party NEC), Andy Mitchell (ImaJSAClaimant) and Dave Allan (TUC Disabled Workers Committee and Unite) among many others.

Comedy from Laurence Clark; Music from from RockinPaddy and Rita Resistance

Co-hosted by Ellen Clifford (DPAC and author of The War on Disabled People) and Laura Pidcock (People’s Assembly).

If ten years of grinding attacks targeted at disabled people in the name of austerity and welfare reform weren’t enough to contend with, then came Covid-19. Almost two thirds of Covid deaths have been disabled people with excess deaths on top. Alongside the fear and the grief disabled people have also had to endure a mainstream narrative that presents our deaths, like those of older people, as somehow inevitable and not counting the same as other people’s – by implication, that our lives are of lesser worth.But disabled campaigners are not letting any of that stop us from doing what we always do during Disability History Month: celebrating Deaf, Disability and Mad Pride and reaffirming our commitment to ending all forms of oppression in the struggle for a better world.

The year 2020 marks 25 years since the passage of the Disability Discrimination Act. Its also ten years since Disabled People Against Cuts was set up to oppose the disproportionate impact of austerity and welfare reform on disabled people. This year we’ve reached out to allies in other campaigns and trade unions to join us for International Day of Disabled People and share in our anger and tears, pride, reminiscence and solidarity. We’d be delighted if you can join us too.

Whatever you do to celebrate #IDDP we’d love to hear what you’re up to – please send messages and photos to @dis_ppl_protest / @pplsassembly.

Also speaking: Sarah Woolley (General Secretary, Bakers Food and Allied Workers Union), Charlie Clarke (The World Transformed), Clara Paillard (President of PCS Culture Sector), Andy Greene and Roger Lewis (DPAC Steering group), Sabina Lahur and Raymond Johnson (People First and DPAC), Mark Dunk (DPAC member and Unite activist), Martha Foulds (DPAC), Paul Ntulila (Inclusion London)

List of supporters: The World Transformed; Bakers and Allied Food Workers Union; People Before Profit.

Reinvigorating the Social Model of Disability


Reinvigorating the social model of disability 6.30 to 8.30 Monday 6 July. Watch live on DPAC’s Facebook/YouTube.

In this meeting a range of deaf and disabled activists and explore the ideas put forward in the final chapter of Eileen Cliffords new book “The War on Disabled People”

Speakers: Marsha de Cordova MP shadow minister for women and equalities tbc; Ellen Clifford author of The War on Disabled People; Mark Duncan DPAC; Karena Marchant activist; Bob Williams-Findlay academic and activist; Denise McKenna mental health resistance network; Catherine Hale chronic illness inclusion project; Rick Burgess recovery in the bin; Kate Carter founding member of the unspoken project cic and aac user; Andrew Lee peoplefirst; Dorothy Gould Liberation and Paula Ntulila deaf campaigner.

Disability News Service: Grassroots activism is the only way to end oppression, Barnes tells book launch

Stop and Scrap Universal Credit: What’s Next for the Campaign?


I have been asked to share the following with all DPAC members and all interested activists:

Where now for the campaign?

Zoom Meeting: Monday 22nd June 2020 6.30-8.30pm

You can join the discussion and watch the meeting from the Facebook link at 6.30pm here:

Or alternatively, from YouTube at 6.30pm and the link is here:


Emergency on Planet Earth #30


 What follows is a random collection of thoughts from a human being trapped in 21st Century British society.


I make no apologies for sharing these two posts from the Disabled People Against Cuts (DPAC) website. I highly recommend that everyone reads these posts in full if they want to learn a thing or two about the modern world and how it works.

The first article is about Ellen Clifford’s book launch. I featured this on yesterday’s blog, but the piece below includes a little more detail and everyone needs to learn about this important title, which is bound to have an effect on the British mindset when thinking about disability issues.

This is followed by a superb piece of writing from Peter Beresford and Mark Harrison, who explore the peculiarly British charitable mindset in a pandemic. It is a fascinating article that will make people think by challenging preconceived ideas

I would love to write more but l am not in the greatest frame of mind at the moment due to staffing issues and a lack of sleep. I am going to have a change of scenery while you enjoy the following articles from DPAC.

I will be back on form in the near future.

F-1582855895-The-War-on-Disabled-People-320x511 (1)

Fighting the War against Disabled People

6.30 – 9pm

Monday 15 June 

Facebook/twitter live

Speakers: John McDonnell MP, Liz Carr (actor and star of Silent Witness), Linda Burnip (DPAC co-founder), Ros Wynne Jones (journalist), Professor Colin Barnes (Emeritus Professor, University of Leeds), Debbie Abrahams MP, Laura Pidcock (national secretary, People’s Assembly against Austerity), Paula Peters (DPAC), Professor Peter Beresford (Professor of Citizen’s Participation, University of Essex), John Clarke (formerly organiser of Ontario Coalition Against Poverty, now Packer Visitor in Social Justice at York University in Toronto), Ellen Clifford (DPAC and author of The War on Disabled People), Ann Galpin (co-chair, TUC Disabled Workers’ Committee), Austin Harney (PCS), Nicola Field (author of Over the Rainbow: money, class and homophobia). Chair: Mandy Colleran (DPAC)

… with music from John Kelly, aka Rockinpaddy, and poetry from Robert Punton.

Ten years ago the Tories came to power with the Coalition government. Disabled people realised from the start that this would have dire consequences for disabled people and the poorest in society. That year Disabled People Against Cuts (DPAC) was formed following a protest outside the Tory party conference.

What has happened since 2010 was worse than anything we could have anticipated. Death is now part of a benefits system designed to punish those unable to earn an adequate income through employment. Disabled people have become re-institutionalised within their own homes as a result of drastic cuts to essential daily support.

Throughout, disabled people have engaged in active struggle in an attempt to minimise the harm inflicted on our communities.

Into this picture the most right-wing government in modern British history was elected in December 2019. In 2020, Covid-19 highlighted even more starkly the growing equalities gaps within society, with official responses to the pandemic confirming that the lives of disabled people are still commonly seen as less valuable than those of non-disabled people.

On 15 June, DPAC will be hosting an event for disabled activists and allies. We will consider the current situation, following a decade of relentless attacks waged on the most disadvantaged people in society by their own government, and explore both the immediate priorities facing us and ideas for building a stronger movement for change.

The event will mark the launch of a new book, ‘The War on Disabled People: capitalism, welfare and the making of a human catastrophe’. The book, written by a disabled activist, analyses recent government disability policy within the context of the history of disabled people’s oppression. It argues that an understanding of wider political economy is necessary both to make sense of the treatment of disabled people and to formulate effective strategies for resistance.

The event will be streamed live on DPAC’s facebook page and twitter.


[Reproduced from Labour Briefing with permission of one of the authors, Mark Harrison]

By Peter Beresford and Mark Harrison

THE ORIGINAL NHS CARD sent out to citizens states that the NHS is not a charity. It is worth quoting from the front of that NHS card:

“It will provide you with all medical, dental and nursing care. Everyone — rich or poor, man, woman or child — can use it or any part of it. There are no charges, except for a few special items. There are no insurance qualifications. But it is not a ‘charity’.”

The huge response to Captain Tom Moore walking round his garden raising £30+ million for the NHS shows how embedded charitable giving and the NHS has become in the British mindset. We argue that charity is the other side of the capitalist exploitation coin and Covid-19 has exposed the very British notion of charity. Henning Wehn, the comedian of German heritage, has a meme on social media saying “We don’t do charity in Germany. We pay taxes. Charity is a failure of governments’ responsibilities.”

VE Day was a reminder that the establishment of the NHS and the creation of the welfare state was a blow to the capitalist class at the end of the Second World War. It was a tactical retreat by them to save their system. Two main factors combined – the Soviet advance to the borders of western Europe and British soldiers returning from war determined that they weren’t going to endure the hardship imposed on their fathers and families after the sacrifices made in the First World War.

The rich feared this would mean revolution and that they would lose everything, and that had to be avoided at all costs. This retreat, however, was only temporary, lasting into the 1960s and early 1970s. The following decades have seen the ruling class attempting to roll back the gains won, starting with Heath and Thatcher but often assisted by Labour leaders and the trade union bureaucracy. Leaders like Blair saw their interests being served, not by advancing public services and closing inequality, but by ‘freeing the market’, privatising public services, shrinking the state and returning the wealth gap between rich and poor back to pre-war and now Victorian levels.

The NHS has a complicated relationship with charity. While services like opticians now sit mainly outside the NHS in the private sector, significant areas of activity are ‘outsourced’ to the charitable sector like end-of-life, hospice and non-medical cancer care. Then you have the global charitable brand that is Great Ormond St Children’s Hospital which is a huge money raising operation appealing to the public’s emotional tie to sick children. All these things undermine the rights-based and universal aspects of the NHS.

Charity and philanthropy are embedded in the British system and psyche. This is an important part of keeping order and knowing your place. By othering portions of the population and segregating them into the deserving and undeserving groups, this can be weaponised against people fighting for equality, human rights and justice. It is the ideological side of the privatisation coin.

Charity in the form of foodbanks is becoming an acceptable part of the welfare state. Mutual aid can be solidarity but can also be patronising and demeaning where the causes of poverty are left unaddressed in favour of charity handouts from the ‘haves’ to the ‘have nots’. People on the left are in danger of colluding with the normalising of food poverty and slave wages in the gig economy, which have contributed to a significant section of the population being dependent on foodbank handouts. It is important mutual aid groups step up the fight for rights and socialism alongside ensuring the populations made vulnerable by this political as well as virus-created crisis don’t starve. Food banks often reflect the poor law attitudes they grew out of – patronising users, restricting the number of times people can return and offering the left-overs of a rich society, instead of truly challenging the DWP and its arbitrary and cruel benefits system.

Capitalism cannot and will not meet the most basic needs of the population – food, shelter, family life, mental health, etc. To collude with this at the expense of fighting for rights and socialism is to side with the oppressors. There is a route through mutual aid and community social action to do both, but this has to focus on solidarity, reciprocity and building a movement that can address the causes as well as the symptoms.

Clement Atlee summed this up beautifully: “Charity is a cold grey loveless thing. If a rich man wants to help the poor, he should pay his taxes gladly, not dole out money at a whim.”

The disability rights movement was forged in a struggle against the big national charities that segregated and imprisoned disabled people in institutions, often in remote rural locations – and this still continues in some cases. Central to this fight against organisations led by non-disabled people speaking and acting for disabled people has been the slogan ‘Nothing About Us Without Us’. When the charity fundraising Telethons first emerged, disabled people held protests outside and invaded TV studios to challenge the notion that they were to be pitied or were charity cases. The slogans developed in this campaign were ‘Rights Not Charity’ and ‘Piss On Pity’.

The charity mindset goes deep and disabled people are still often defined using negative and pitiful images and language in advertising campaigns to raise money for disability and other charities. The current Covid-19 pandemic has demonstrated that this othering and demeaning is still alive and well. The discourse is often framed around disabled people being vulnerable and a vulnerable group.

The reality is that disabled people are made vulnerable not by their impairments but by the barriers and discrimination society constructs to make disabled lives unequal. By defining disabled people as vulnerable per se it removes both voice and agency and relegates them to passive victims who need to be ‘looked after’ by charities. It is revealing that the current Minister for Disabled people, Justin Tomlinson, has during Covid-19 failed to meet with representatives of disabled people’s organisations (DPOs) but has found the time to meet with the Disability Charities Consortium.

In the neo-liberal world of Cameron’s coalition government the slogan ‘Big Society’ was developed to promote charitable giving and receiving as a cover for slashing funding to state services. This saw charities competing with each other and commercial businesses for government contracts, as the state was shrunk to unsustainable levels. Charities became big businesses with hundred million pound turnovers and CEOs earning six figure salaries.

Meanwhile disabled people were excluded from this game. User-led DPOs had their funding slashed and many closed down as a result. Interestingly, Scope, formally known as The Spastics Society, has recently sold off all its services to the private sector and now brands itself as the disability equality charity — moving to exclude and take over from the authentic and democratically accountable voice of disabled-person-led DPOs.

The other half of the charity con here is the way Johnson’s government has used and abused volunteering during the pandemic. Remember the 750,000 volunteers, and then the increasing number of stories about people being ready to help but with nothing for them to do, no protective clothing available and then the bigged-up O2 Nightingale Hospital having to close for want of staff?

There is enormous goodwill that operates in societies like ours where people want to contribute their time and skills as part of their sense of civic involvement and mutuality. Thus have developed great community innovations like the heritage railway and canal movements, befriending schemes and bereavement support. Sadly the Tory reality of volunteering is more often using it as a substitute for paid employment and taking advantage of people’s altruism. So far, anyway, the signs are that it is the local, community based volunteering arrangements that are coming up trumps, not the high profile centralised ones or those operated by big charities.

We now know a lot about what makes for good volunteering and it demands a lot more than some quick spin from a politician uncertain how to respond to a large-scale emergency or to fill the gaps resulting from constant cutting of the public service infrastructure. There are principles for good practice and constraints that need to be recognised because of the demographics of volunteers.

According to the Institute of Volunteering Research at the University of East Anglia:

“While the public response has been tremendous, there is a lack of collaboration between national and local approaches leading to people not knowing what they can do to help their communities. Millions of volunteers are currently themselves directly and indirectly affected by Covid-19 and among them many can no longer volunteer. In some cases the organisations who involve them have had to stand them down or they are at increased risk of severe illness.”

Volunteering may be headline grabbing but it’s no panacea. Nor is it necessarily the cheap option. It costs to organise and administer volunteers effectively and it is now recognised as good practice that expenses should be met, and some token payment may need to be made if volunteering is to be truly inclusive.

But Johnson’s government has shown where its heart really lies. Volunteering may look good and keep the voters busy, but anything more than that and it turns to its natural allies, the for-profit outsourcing sector. Having at last got some sort of testing system for Covid-19 underway, it is the likes of Serco, Boots, and Sodexo, the private equity organisations it truly feels comfortable with, that have been recruited to run testing centres, using low paid unskilled casual workers to do so.

All in all the Johnson response to the crisis of a new pandemic is a worrying mish-mash of old anti-state thinking that takes no account of the brave new insights available both from 21st century user-led organisations and grassroots voluntary action — based on a commitment to life enhancing mutual aid instead of crude cost-cutting.

Peter Beresford and Mark Harrison


Mark Harrison is director of Social Action Solutions, and Senior Research Fellow in Social Action at the University of Suffolk.

Peter Beresford is co-chair of Shaping OurLives, the disabled people’s and service users’ organisation and network, and Professor of Citizen Participation at the University of Essex.

Emergency on Planet Earth #28


 What follows is a random collection of thoughts from a human being trapped in 21st Century British society. 



Below, I have copied a letter from the DPAC Steering Group to Jonathan Reynolds MP – the Shadow Secretary of State for Work and Pensions. It refers to comments from Reynolds relating to welfare payments. 

It is deeply troubling that so early in to the Keir Starmer regime, our social democratic party seems to be reversing at full pelt back to the dark days of Blair.

I am still a member of the Labour Party because of the work being done by Mark Drakeford in Wales, and it is sad to see the party in Westminster drifting back towards the centre-right. The fact that this is happening at a time when the Conservative Party are making such a hash of the Coronavirus crisis, is agonising.

It will be extremely interesting to see how Jonathan Reynolds replies to the letter below. Only a complete backtrack will suffice in this case, or my membership of the party will be in serious doubt.

I wish I could only be a member of Welsh Labour. I will remain a member of the party while Mark Drakeford is First Minister. He has earned my loyalty. It will be interesting to see which way Starmer steers his ship in the next few weeks and months.


Dear Mr Reynolds


Regarding your statement that “Welfare should reflect ‘what you put in’ to tackle public mistrust”

In a comment to the Morning Star, our spokesperson described your comments as “Toxic idiocy”.

Toxic, because, as (too few) wise and responsible senior politicians are well aware, we live in a dangerously fractured, highly unequal society.

They are aware that making statements that will only increase those fault lines and set social group against social group (“them and us”) is highly irresponsible, can only lead to further social division and stoke hate, which at worst can lead to hate crime against “them”, and that includes disabled people.

As you have seem so keen to demonstrate, you are neither a wise nor responsible politician

Idiotic, because you only need to spend a moment considering the implications of your statement to see that it is palpably idiotic.

If you take your statement to its conclusions in terms of policy, these are the outcomes that you get:

1) Higher Rate Taxpayers should have higher benefit entitlements

2) Women, who, as is well established, not only earn less (“the Gender Pay Gap”), but through their caring responsibilities both for children and family members save the government many millions of pounds. In simplistic terms therefore they pay less tax, so should have lower benefit entitlements.

3) BAME people, who earn less (“the BAME Pay Gap”), and therefore pay less tax, should have lower benefit entitlements

4) Young adults who have had less time to accrue tax payments, and therefore should have even lower benefit entitlements than they do already

5) Disabled people who face huge barriers in terms of discrimination and lack of access, who have great difficulty in accessing any work at all (“the Disability Employment Gap”) , and therefore pay much less tax, should receive much lower benefit entitlements

6) Disabled People who, due to their impairments, do not have the capacity for paid work ( however much they want to work, they simply can’t), and who pay very little tax should receive no benefit entitlements

Please would you confirm that the 6 statements above are the logical results of your statement to the  House of Commons, and could you  please let us know if you intend them to become Labour Policy

If you do not intend for these to be Labour’s benefit policies, could you please tell us, why you made that statement, and please tell us, precisely what your policies will be in the light of your comments

We have long been used to toxic and dangerously idiotic statements from the Tory Party, and have lowered our expectations accordingly. Now it seems we need to lower our expectations of Labour.

You should be under no illusion that this will also lower our intentions to engage positively with the  Labour Party, and will certainly lower disabled peoples’ motivation to vote for Labour at election time.

As is our normal practice, we are publishing our letter to you on our website, and will publish your response to us (or state that there has been no response on our site) in order to give you a public right of reply.

We are sure that DPAC’s supporters will await your response with great interest


The DPAC Steering Group


Emergency on Planet Earth #17


What follows is a random collection of thoughts from a human being trapped in 21st Century British society. 


This is very exciting news. I have been calling on such measures for years and let us hope that some good will come out of this awful situation that we find ourselves in.

More about this development can be read in the BBC News article via this link.




I am sharing a couple of posts from the excellent Disabled People Against Cuts website, which can be accessed here.

These are essential reading for disabled people who are living independently, or struggling to be heard during this Covid-19 crisis. Both posts can be viewed in their original format by clicking on the titles of the posts below.

I plan to record a video for the Independent Living Film Project, and write a journal based on my personal experiences of the Covid-19 saga. I will publish both of these on my blog, so keep your eyes peeled.


Independent Living Film Project Calling all Deaf and Disabled People – tell us why Independent Living matters to you!

We need your help for our campaign for a National Independent Living Service (NILS).  Please make a film on your phone following the format below:

Independent Living Film Project

Calling all Deaf and Disabled People – tell us why Independent Living matters to you!

How to get involved?
  Easy – make a video on your phone and send it to us, we will do the rest.

What do I need to do? Answer the questions below on camera and then send your video to us at info@rofa.org.uk

How long does it need to be? Maximum length is 4 minutes – one minute per question – we want quality, not quantity!


  1. What’s your name, where do you live and why is independent living important to you
  2. Based on your experience what is the difference between social care and independent living
  3. Why do we need a legal right to independent living and a national independent living support service?
  4. What is your main message to the UK Government?

At the end of the video tell ROFA you give us permission to use your video for campaigning purposes to win a legal right to independent living and a national independent living service then send it to info@rofa.org.uk

Please also circulate to your networks!


Mark Harrison


Journals of a Pandemic A Project recording life in Covid-19

Become one of our diarists and write entries describing any aspect of your day, from the taste of your coffee to the impact of Covid-19 on your activism, mental health, sex life and everything in between.

We are particularly interested in the voices and stories of those not well represented in the mainstream media – including but not limited to: unions; those with disabilities; NHS workers; sex workers; prisoners; activists; precarious workers; writers, artists and performers.

Contribute as little or as much, and as often as you like here. You may send your entries in either written or recorded form and feel free to include photographs, drawings, or anything else you would like to share.

To get in touch, email us at journalsofapandemic@gmail.com

Dr Ana Baeza Ruiz

Curator (Student Engagement)

Museum of Domestic Design & Architecture (MoDA)

MoDA Collections Centre

Middlesex University

9 Boulevard Drive, Beaufort Park

London, NW9 5HF


Emergency on Planet Earth #15


What follows is a random collection of thoughts from a human being trapped in 21st Century British society. 



Lockdown is sending me a bit more nerdy than usual. This afternoon I welcomed a new member to my gnome family: Baggie Bird who has flown all the way from West Bromwich Albion.

Full marks to the West Midlands Club who included a WBA lollipop along with the mascot gnome, which was a nice touch that made me smile. It also ensures that I will always have a soft spot for the Baggies from now on.


The article below has been taken from the Disabled People Against Cuts website and can be found in its original format by clicking here.

 Someone we know is working with a couple of lawyers to get the visitor policy if admitted to hospital challenged.

They need statements from people saying “This would affect me because…”  This need only be a short statement saying why you need extra help from someone who knows you and ideally what that help is.

It would be particularly useful if someone who uses a communication aid, or BSL or Makaton could highlight how they would be affected by being unable to communicate with masked medics.

Also, people whose physical needs are not usually safely met in a hospital (inpatient and outpatient) please.

And any other groups not mentioned but who also need to be included.

Please email details to us at mail@dpac.uk.net and we will forward these on for use in a witness statement and to show that many disabled people do need to have someone accompany and support them in hospital.

If your life matters please email your MP


In spite of a small climb down by NICE activists remain concerned that the lives of disabled people will be deemed to be of lesser value than those of non-disabled people in the event of rationing of equipment needed to treat Corona Virus. Many older and disabled people in various locations around the country have already received letters from GPs asking them to sign DNR and DNAR forms. In a few cases even when people have refused to do so GPss have issued these as unfortunately doctors can have the last say about not resucitating you and over rule your wishes.

If you value your own lives we are asking you to email your MPs urgently and a template letter is below. You may also wish to look at the Not Dead Yet website     Not Dead Yet UK: Call to Action  http://notdeadyetuk.org/covid-19-a-call-to-action/

Template Letter

<Add your name and postcode >

<Add Date>

Dear <Add name of your  MP – find your at https://www.writetothem.com/ >

I am writing to you, as my MP, to ask you to protect the rights and lives of Disabled people.

Since Covid-19 (Coronavirus) has started to spread, there are stories in the news that are very worrying. Some doctors have been sending groups of Disabled people ‘Do Not Resuscitate’ forms to sign (1). This has happened even though the NHS says that doctors must talk to people first.

I am worried that some people think Disabled people are not worth the same as other people (2) I’m also worried that Disabled people might not get:

  • a choice about signing these forms;
  • life-saving care, if they become really ill with Coronavirus;
  • help and support to understand what is happening with care.

This would be against NHS rules, the Human Rights Act and Equality Act.

I do not agree that doctors should be made to use ‘frailty scales’ (3) to decide who does, or does not, get treatment for Coronavirus. Hospital doctors can already decide if a treatment will be good for a patient, and decide the best way to use medicines and equipment.

Although the advice has been changed (4) to say ‘frailty scales’ should not be used for some Disabled people, they can be for others, so it is still discrimination.

Everyone has equal value, whatever our age, health or disability.

I know that this is a very difficult time for the NHS, but it is not Disabled people’s fault that health services have had their funding cut. It’s not our fault that services don’t have enough equipment.

Please support Disabled people and write to:

Matt Hancock, Minister for Health and Social Care

Simon Stevens Chief Executive NHS

Ian Dalton, Chief Executive, NHS Improvement.

Please ask them to:

  • Get rid of the NICE guidance about the ‘Clinical Fraility Scale.’
  • Support Disabled people to have a choice about their treatment.
  • Protect people’s rights under the Human Rights Act and Equality Act.
  • Work with Disabled people and Human Rights groups when deciding on rules and advice about Coronavirus.

I look forward to hearing from you about their responses. Thank you.

Yours sincerely

<Add your name>


(1) CQC condemns ‘do not resuscitate’ notices on care plans

(2) ‘Who’s Life Counts?’ British Institute of Human Rights


(3) ‘The Clinical Frailty Scale is not suitable for use with people with learning disabilities’ – Nursing Times

(4) ‘NICE updates rapid COVID-19 guideline on critical care’


Please also read:

‘Coronavirus: Anger over ‘terrifying and discriminating’ intensive care guidance’ – Disability News Service

Coronavirus: Anger over ‘terrifying and discriminating’ intensive care guidance

Not Dead Yet UK: Call to Action

COVID-19 – A call to action


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. 


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