I WILL WRITE A NUMBER OF EMERGENCY ON PLANET EARTH BLOGS THROUGHOUT THE TORY SPONSORED CORONAVIRUS CRISIS.
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.
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 email@example.com 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.
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/
<Add your name and postcode >
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.
<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
Not Dead Yet UK: Call to Action
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 London, Disabled People Against Cuts, The Alliance for Inclusive Education, People 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:
I do not believe that disabled people in Wales will be effected by these potential measures, but I am sharing this important information in a show of solidarity with my disabled brothers and sisters from across the border.
Previously when we’ve asked people to write to their MP we haven’t had many people do it.
This situation is extremely serious and I can’t stress this enough, WE NEED YOU TO WRITE TO YOUR MP THIS WEEKEND, this is being voted on Monday.
Please read this below from Inclusion London, and then ACT by writing to your MP, there is a template letter below.
If you don’t write to your MP and these measures get voted through and you lose your social care, or your civil liberties are legally infringed, then you only have yourself to blame.
Coronavirus Bill could leave thousands of Disabled people without support
The bill potentially poses a serious risk and can put the wellbeing of many at real danger. We ask you to write to your MP immediately.
Inclusion London is very much concerned about the devastating impact of the proposed Coronavirus Bill on the lives of thousands of Disabled people. It potentially poses a serious risk and can put the wellbeing of many at real danger.
The Bill sets out emergency laws in response to the COVID-19 emergency. The Bill is being debated in Parliament on Monday 23 March. We urge you all to write to your MP expressing your concern over the implications of the Bill for Disabled people.
We have drafted a template letter which you can download here and send to your MP.
You can use this website to write to your MP: https://www.writetothem.com/write
Why we are concerned
As it stands the Bill poses a serious risk to the lives of many Disabled people, especially those of us who need social care support.
The Bill will effectively free local authorities of their duties to provide social care support under the Care Act 2014 and will only oblige local authorities to provide support in cases where the human rights of Disabled people will be breached.
We know from experience that in order for human rights to be breached in social care context the situation has to be very critical or severe.
Please act now and write /email your MP before this Monday 23 March – you can use the template below. The letter can also be downloaded here as a word document.
Template letter to MP
Dear [add your MP’s name]
Coronavirus Bill: Disabled people are in danger
I am writing to ask you to take action to protect the lives of many thousands of Disabled people. Please raise the issue and if possible table and support the amendments to prevent this from happening.
I believe that the #CoronaVirusBill presents a real and present danger to the lives of Disabled people. The government’s plans for Disabled children and adults during the crisis are effectively rolling back 30 years of progress for Disabled people. They also come after years of chronic under funding of social care which have resulted in a social care system already at breaking point. The government’s plans are to:
- remove Disabled people’s rights to social care
- change the duties to educate to meet children’s educational requirements to a ‘reasonable endeavours’ duty
- severely undermine the civil liberties of Disabled people and erode their rights to support.
I understand this is an unprecedented and extremely challenging situation, but given the already broken social care system this Bill will almost inevitably leave many thousands of Disabled people without essential support or any rights to request this support. Rolling back our rights is not good for anyone and in the current circumstances will put many lives at risk.
Rather than removing Disabled people’s right to social care support the government must treat our essential social care service as key infrastructure, alongside the NHS, and as such it must immediately provide the necessary funding to keep this vital service running.
To explain my reasons for writing to you, please see my understanding of negative social implications of the #CoronaVirusBill on the lives of Disabled people and their families detailed below. This information was prepared by the barristers who specialise in public law and disability rights.
Implications of the Bill for Disabled people
What does it mean for disabled adults?
The Bill suspends every duty in the Care Act, 2014, including the duty to meet the eligible needs of disabled people (Section 18) and their carers (Section 20). Under the #CoronaVirus Bill, Local Authorities will only have to provide care ‘if they consider it necessary’ for the purposes of avoiding a breach of the European Convention of Human Rights (ECHR). There is no human right to social care or positive obligation under the ECHR to meet care needs. See assessment from leading lawyers specialising in Social Care here: https://www.39essex.com/the-coronavirus-bill-schedule-11/
Other changes set to be introduced through the #CoronaVirusBill will allow health bodies to delay carrying out an assessment for eligibility for NHS continuing care
What does it mean for disabled children and young people?
Duties for young people transitioning to adult social care have also been suspended.
The Secretary of State for Education will have power to disapply the duty on schools and other institutions to admit a child to a school where they are named on an EHCP. The Secretary of State will be able to vary provisions of the act, such as the core duty to procure provision set out in an EHCP, so instead of being an absolute duty it becomes a ‘reasonable endeavours’ duty, creating a lesser entitlement for up to two years.
What about the Mental Health Act?
The power to recommend individuals be detained under the Mental Health Act will be implemented using one doctor’s opinion instead of two, making it easier for people to be detained.
The proposed bill will temporarily allow the extension or removal of time limits in mental health legislation which means individuals might be released into the community early, or find themselves detained for longer.
Under section 5, emergency detention for people already in hospital would extend from 72 hours to 120 hours, and nurses’ holding powers would extend from 6 to 12 hours. Under sections 135 and 136, police powers to detain a person found in need of immediate care at a “place of safety” will extend from 24 hours to 36 hours. Under section 35/36, the cap on how long someone can be held in hospital while awaiting a report (currently 12 weeks) will be lifted.
What about the rights of disabled people?
Local authorities will have a duty to uphold disabled people’s human rights under the European Convention on Human Rights, BUT the threshold for a breach, in terms of not providing care and support is high, which means that disabled people will be left without care and support. Lack of care and support will have a significant impact on disabled people’s well-being, but may not be considered to reach the threshold for their human rights to have been breached – they will NOT have a right to care and support.
Sources of information
Watch @stevebroach, Public Law Barrister talk about the impact of the Bill here: https://www.specialneedsjungle.com/steve-broach-public-law-barrister-on-the-coronavirus-bills-implications-for-disabled-children/
Read this Twitter thread for more information: https://twitter.com/JamieBurton29/status/1240781535340568577
Statement from National User Survivor Network: https://www.nsun.org.uk/News/covid-19-and-human-rights
Current hashtags: #CoronaVirusBill #CoronavirusBillUK
Forwarded by Disability Labour @DisabilityLab
In the absence of any effective action and advice from the UK Government all members and their families should be aware of the advice from the World Health Organisation regarding protecting yourself from the Covid-19 virus, This is especially important for us as many of us have underlying immune system issues that make Covid-19 of greater concern than for the general populous.
I have copied the following blog from the Disabled People Against Cuts (DPAC) website. It is very important that disabled people read the following and take decisive action (whether you have engaged with DWP in the past, or not), if we ever want anything to change…
The government’s benefits advice body Social Security Advisory Committee (SSAC) are asking disabled people to contact them with details on how they have and/or are treated by the DWP, this is not about actual benefits, but how the DWP listen and include disabled people when formulating policies and processes which affect them.
This consultation closes at
11:45pm on 23 March 2020
If you want to include your evidence, follow the link in the How To Respond section below:
How should DWP involve disabled people in changing how it works?
Published 24 February 2020
As part of its independent work programme, the Social Security Advisory Committee (SSAC) is conducting research into how the Department for Work and Pensions (DWP) engage with disabled people in formulating policies and processes which affect them.
We are seeking evidence to underpin our research. We would therefore welcome input from a broad range of organisations and individuals who have relevant insight or evidence to share with us.
Background to our research project
DWP regularly consults disabled people, or organisations representing them, in developing policies and implementing services affecting them. However, the extent, consistency and effectiveness of that engagement is not clear.
This research aims to build a better understanding of that, and consider what scope exists to improve DWP’s current approach, drawing on relevant best practice that exists elsewhere.
The majority of changes to disability benefits over the past decade have primarily affected those of working age. Our research will therefore focus on this group.
Call for evidence
SSAC is interested in obtaining evidence from a wide range of individuals and organisations who have relevant evidence, experience or insight on the questions below. In this call for evidence we are not looking for views about social security benefits, but about how you think DWP listens to feedback from disabled people or involves disabled people, and any ways in which this might be improved.
If DWP have engaged with you in the past, please answer the following questions:
1. Can you tell us about the process? For example:
how did DWP invite you to take part?
what information and/or feedback were you asked to give to DWP?
what were the positives and/or negatives of your engagement with the department? Can you explain why you have this view?
did you find the process accessible? If you requested accessible formats or adjustments were these made available?
[for organisations] Did DWP request that they could speak with individuals and/or groups of individuals from, or represented by your organisation, to provide evidence (i.e. interviews, focus groups, etc.)
did the DWP provide any comments on the advice or feedback that they received from you?
please share any other relevant evidence of your engagement with the department.
2. To what degree have there been benefits from engaging with DWP?
have you seen any tangible improvements to policies or practices for disabled people following your engagement with DWP? If so, could you set out what these are? If not, what were the tangible improvements that you expected to see?
has DWP provided feedback to you on improvements the department made as a result of engagement with stakeholders?
following your engagement, did DWP give you the opportunity to comment on draft proposals before final decisions were taken?
3. Based on your experiences, would you wish to engage with the DWP in future?
what do you see as the positives and negatives of engaging with DWP, based on your experience? Would you engage in similar circumstances in future?
could the process of engagement with the department be improved? If so, how?
4. Please tell us about other engagement you have had on disability issues with public sector or other organisations outside of DWP? For example:
please explain the process for this engagement?
how did it compare with the way in which the department engaged with you? What were the similarities and/or differences?
5. In your view, can the DWP’s process of engagement be improved and, if so, why and how?
6. Is there anything else you wish to add about this subject?
If DWP have not engaged with you in the past, please answer the following questions:
7. In what ways do you think you could have made a valuable and constructive contribution to DWP’s work, and what would be the most effective way for DWP engage with you?
8. Would you wish to engage with DWP in future? Please provide the reasons for your answer?
9. What would be the most effective way for DWP to make sure you could engage with them?
10. Are there any areas or types of engagement that you would not have with the department?
11. Please tell us about other engagement you have had on disability issues with public sector or other organisations outside of DWP? For example:
please explain the process for this engagement?
12. Do you have any suggestions to develop the process for you to be able to engage with DWP in future?
13. What would be your minimum expectations of who the department should consult, and how that consultation should take place, to provide reassurance that decisions taken by the Department are well-informed and credible?
14. Is there any other evidence on this subject you would like to add?
How to respond
Responses, focusing on the above questions, are needed by 11.45pm on 23 March 2020 and should be emailed to:
Or send to:
The Committee Secretary
Social Security Advisory Committee