Official figures showing how many disabled people are dying due to coronavirus will finally be published next month, Disability News Service (DNS) can reveal.
The Office for National Statistics (ONS) has told DNS that it recognises the importance of providing the figures and will publish them “as soon as is possible”.
The data is likely to be published for the first time towards the end of June, which would be about four months after the UK’s first recorded death from COVID-19.
One grassroots group of disabled activists told DNS yesterday (Wednesday) that the failure until now to produce figures on how many disabled people have been dying due to coronavirus “simply reflects the lack of value placed on our lives by this government”.
The ONS plans were revealed as four campaigners* launched a legal action against the government and various public bodies over their failure to publish “accurate and reliable” data on how many autistic people and people with learning difficulties are dying from COVID-19.
They have sent a “pre-action” letter to NHS England; health and social care secretary Matt Hancock; NHS Digital; the UK Statistics Authority; and the Care Quality Commission (CQC), arguing that this failure is both “irrational” and “discriminatory”.
They say it is a “stark” contrast to how published data on COVID-19 deaths is broken down by ethnicity, age and sex.
And they fear the absence of data could make it impossible to ensure that autistic people and people with learning difficulties are safe and can access appropriate healthcare, and to monitor whether they are dying “prematurely and preventably” from COVID-19.
Funding for the case is being crowd-sourced as part of the #EveryDeathCounts campaign, with legal support from solicitors Rook Irwin Sweeney and barrister Steve Broach.
Although NHS England has, in the last week, started to publish new data sourced through its “learning disabilities mortality review”, the #EveryDeathCounts legal team has described these figures as “partial and incomplete”.
Meanwhile, the new ONS figures should – from next month – show whether deaths of disabled people from coronavirus have occurred in hospitals, care homes and private homes, and should also be broken down by age, sex, ethnicity and occupation.
It has proved difficult so far to publish such figures – according to ONS – because death certificates do not state whether a person is disabled, although conditions are mentioned if they were a cause of death.
ONS has instead been working to link records from the last UK census in 2011 – where people reported whether they considered themselves to be disabled – with health records and death registrations.
An ONS spokesperson said: “We are prioritising work to analyse the impacts of COVID-19 on different communities and groups and have already produced one article focussing specifically on the social impacts on disabled people during lockdown.
“We appreciate the importance of this information and will publish as soon as is possible.”
But the government’s failure to keep track of the impact of the pandemic on disabled people has frustrated and angered disabled campaigners.
Mike Smith, the former disability commissioner of the Equality and Human Rights Commission and now chief executive of the east London disabled people’s organisation Real, said the figures were long overdue.
The focus on disabled people was “months behind” other groups, he said, as it had been throughout the crisis, such as with the publication of government guidance for disabled people using direct payments to employ their own personal assistants.
Smith (pictured) said the new data would be important because it could be used to drive policy and practice locally and nationally, and to check whether younger disabled people were disproportionately more likely to die from the virus.
He said he hoped the figures could also show whether there had been an impact – even subconsciously – on the NHS treatment received by disabled people as a result of discriminatory guidance issued by both the National Institute for Health and Care Excellence (NICE) and the British Medical Association.
Smith added: “At the moment, disabled people feel ignored by the government, devalued by the medical profession, and forgotten by people planning the relaxing of the lockdown.
“We are not able to access restricted public transport, take long walks or cycle or even get to the shops safely, and are fearful that our care and support arrangements might be cut too. People feel isolated and unsupported.”
Smith said he hoped the ONS figures might help disabled people – particularly those seen as “at risk” but not extremely clinically vulnerable to coronavirus – make an “informed decision” on when and how it was safe for them to “re-engage in society” after lockdown.
But he said numbers needed to be “backed up with a proper review of what people in our situation should be doing”, and “much more comprehensive guidance and support nationally and locally to stop us from being the forgotten minority who are languishing at home for the next year”.
He said: “We do need to know this information, but we also need to know that it is used by policy-makers and decision-makers to appropriately target resources to help us maintain our freedom and human rights.
“The numbers alone are not the goal. It is what is done with the numbers.”
Professor Peter Beresford, co-chair of Shaping Our Lives, said: “From early on, we knew who COVID-19’s victims were most likely to be.
“They were older people, people with long-term and underlying conditions and compromised health and immunity. That includes many disabled people.
“As a group recognised under equalities legislation, it is shocking that information has not so far been collected on deaths among disabled people from the pandemic and it is crucial that the ONS expedites its work to rectify this omission as soon as possible.”
He said there was also a “much broader failure to collect full and accurate information about the consequences of COVID-19 in the UK”, which he said was “essential to combat it”.
He added: “But then the political sub-text has long been that this is a public health war that has been fought on spin and distraction rather than implementing the essentials long established for countering pandemics.
“I strongly doubt that disabled people have even figured in government reckoning until we have forced ourselves on to its attention.”
Svetlana Kotova, director of campaigns and justice for Inclusion London, said: “It is extremely concerning that so far the data on COVID-19 deaths does not show how many of those people were disabled.
“It is vital that ONS collects and publishes this data as soon as possible, so that the true impact on disabled people can be assessed.
“We know already that disabled people feel they were abandoned and sacrificed during this crisis with many left fearful for their lives and wondering whether or not they will get the treatment and help they need if they become ill.
“This data can help to shine a light on what disabled people are going through during this pandemic.”
Linda Burnip, co-founder of Disabled People Against Cuts, said: “The lack of stats on the number of deaths of working-age disabled people is not surprising and simply reflects the lack of value placed on our lives by this government.
“There is little difference between these unnecessary deaths and the many thousands we’ve all witnessed over the previous 10 years.
“Being unproductive to capitalism, we are all expendable.”
Ian Jones, from the WOWcampaign, said: “Yet again this government refuses to measure the impact on disabled people of their policies.
“It is important to assess the impact this virus and all other viruses in future have on disabled people to identify where society has failed to protect those people it should be protecting and put that right for the future.
“Who decided it would be a good idea to discharge patients from hospitals into social care with the impact of seeding COVID-19 into the homes of elderly and disabled people?”
He compared the government’s actions on coronavirus with the thousands of deaths that have been linked to the government’s welfare reforms and the actions of the Department for Work and Pensions.
Asked about the current gap in statistics on coronavirus-related deaths of working-age disabled people, and the legal action, a DHSC spokesperson said: “Any death from this virus is a tragedy and we are working incredibly hard to protect the nation’s public health.
“We are committed to transparency, and publishing robust, quality assured data. We want to ensure that any data we publish is as accurate as possible before publication.
“We are working with arms-length bodies and stakeholders to improve our data reporting, and to better understand the impact of this virus on people with disabilities and those who are clinically vulnerable.”
She said DHSC had received a letter from Rook Irwin Sweeney but could not comment on it for legal reasons.
Asked about the current gap in statistics on coronavirus-related deaths of working-age disabled people, and the legal action, a CQC spokesperson said: “Supported by ONS we are doing further work on our care home deaths data so that we can better understand the impact of coronavirus (COVID-19) on specific groups of people, including people with learning disabilities.
“This will form part of our reporting moving forwards. We are also identifying the best approach to capture the impact on autistic people as part of this.
“This work is a priority for us and will be published as soon as possible.”
*Disabled activist Simone Aspis, who is campaigning to reduce the high levels of deaths of people with learning difficulties; Mark Neary, who took a ground-breaking Court of Protection case in 2010 relating to the unlawful deprivation of liberty experienced by his son Steven; Dr Sara Ryan, who has fought for justice for her son Connor Sparrowhawk, who died a preventable death in an NHS institution in 2013; and open justice campaigner Dr George Julian
**For sources of information and support during the coronavirus crisis, visit the DNS advice and information page
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