Coronavirus: Government’s guidance failure ‘will cost lives’

Please note: The current Coronavirus Covid-19 pandemic is fast moving, and reactions to it seem to update not just day-by-day but minute-by-minute. Obviously, this site was not designed to bring you the very latest developments in a ‘breaking news’ story such as this. Instead, this site will continue to include news and opinions relating to major events, policy changes, and so on.


Campaigners for disabled people are criticising the government for continuing to fail to produce information and guidance to help disabled people protect themselves during the COVID-19 pandemic

They say the failure Is unacceptable and will cost lives.

Criticism began to be voiced after the UK government’s Department of Health and Social Care (DHSC) failed yet again to publish guidance for disabled people who use direct payments and employ personal assistants (PAs) on how to protect themselves and their staff during the pandemic.  People who receive direct payments include a number who live with multiple sclerosis.

Last Friday, was four weeks since ministers produced guidance for the wider social care sector, which was aimed at service-providers in the residential care, supported living and home care sectors, but not at disabled people who employ their own PAs.

john pring

John Pring.

According to the Disability News Agency, the previous week, a DHSC spokesperson said that guidance for disabled people who use direct payments would be published “shortly”. But DHSC had not responded to a request for updated information by Thursday, more than a week after that promise was made.

In a DNA report, John Pring wrote:

Inclusion London, the pan-London disabled people’s organisation, said the government’s ongoing failure to produce “accessible and targeted information and guidance” for deaf and disabled people was not acceptable.

tracey lazzard

Tracey Lazard.

Tracey Lazard, chief executive of Inclusion London, said: “The additional stress, confusion and anxiety this is causing cannot be overestimated. It will also cost lives.”

As well as the failure to produce guidance for recipients of direct payments, she also pointed to the lack of a British Sign Language (BSL) interpreter at the daily televised UK government COVID-19 briefings, and the failure to produce information on how to secure personal protective equipment (PPE) to protect disabled people and their PAs from the virus.

She said: “Both local and central government must act now.

Need for clear guidance

We need accessible, consistent and clear guidance from both central and local government on a range of welfare, Access to Work and social care/direct payments issues including PPE.

“We also need local authorities to urgently and actively work with Deaf and disabled people’s organisations to develop information, guidance and resources that directly address our priority needs and concerns.”

mark williams

Mark Williams.

Mark Williams, from the grassroots disabled people’s organisation Bristol Reclaiming Independent Living (BRIL), said: “As an employer of PAs I have been dismayed and horrified at the lack of information for individual disabled people who employ PAs.

“At the moment, with the country in lockdown, we are one of the few remaining areas of essential employment trying to carry on as normal, but we need to have the right equipment and information to do that.

“The failure to provide any information puts many disabled people’s lives on the line, and PAs are starting to refuse to come to work.”

Williams said he watched press conferences every day from the UK, Scottish and Welsh governments, but the UK government’s press conference in London was the only one where there was no BSL interpreter.

A BRIL spokesperson added: “People are already feeling under threat; the lack of guidance from central government is adding to the anxiety felt by hundreds of thousands of people across the country.

“We know that people with direct payments, their PAs and families desperately need both additional support and accurate information.

“While some local authorities are working with deaf and disabled people’s organisations (DDPOs) and being proactive, the overall picture across the country is very increasingly worrying.”

He added: “Grassroots groups, self-advocates and organisations are working together to produce EasyRead and BSL information.

Many problems of the COVID-19 crisis

“While this increasing the pressure on groups who were already struggling before the pandemic, it’s shown how vital our knowledge and experience is, and that we can work together.”

Meanwhile, online meetings held by Inclusion London with 14 of the DDPOs it supports have uncovered some of the many issues facing disabled people and their user-led organisations as a result of the COVID-19 crisis.

They include a lack of guidance and information from local and national government; difficulties communicating with social services and the Department for Work and Pensions; problems accessing food and PPE; increasing mental distress and isolation; the higher workload facing advice and support staff; funding problems faced by DDPOs; and concerns about individual disabled people “slipping through the net” if they cannot access phone or online support.

But they also heard how DDPOs in the capital were responding to the crisis, including distributing food and food vouchers; collecting prescriptions for disabled people; using new volunteers to provide telephone support; holding daily phone meetings with the local authority; and using volunteers to provide telephone befriending.

A key message, according to Lazard’s report on the online meetings, was the need to “keep taking about equality, rights and co-production and challenge the thinking that is increasingly viewing us, again, as just vulnerable and passive recipients of care”

No doubt the government will hear the criticisms levelled by the campaigners, but will it listen? I think not. This government led by Boris Johnson, like its two predecessors under Theresa May and David Cameron, doesn’t have a good track record when it comes to listening.

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Please note that being born in the UK, all my posts, are written using British English spelling.

For example:

Centre                              not center (except in names, Centers of Disease Control)                  Colour                              not color                                                                                                                      Diarrhoea                       not diarrhea                                                                                                  Haematology                not hematology                                                                                Haematopoietic          not hematopoietic

* * * * * * * * * * * * * * ** * * * * * * * * * * * * * ** * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. Ian is not a doctor, so cannot and does not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely his own unless otherwise stated.


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