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We want to say a big thank-you to all of you who have

given money to support the court case.

We also want to thank all if you for sharing the court case with

your friends and everyone you know through networks.

We are not actively asking for any more money for the court

case.

Any money that has not been spent on the

court case will be used to support other

disability rights cases.

Why we are going to court?

Our legal team have sent a letter to the

following 5 organisations that collect

information about peoples’ deaths warning

them that we will be taking them to court.

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The organisations are NHS England, the

Secretary of State for Health and Social

Care, NHS Digital, UK Statistics Authority

and the Care Quality Commission. You

can still read about the court case (web-

link to easy read version)

At the start of the court case there has been no information

about the numbers of people with learning difficulties and

autism dying from covid-19.

We now have some information about people

with learning difficulties and autism died from

covid-19 from all the defendants.

The collected information people with learning

difficulties and autism is poor for the following

reasons:

• Not collected all at the same time.

• Not always updated correctly.

• No agreement on when a person should or should not be

recorded dying form covid-19.

• People with autism without learning difficulties are not

always included in the figures.

What we thought about the letters replied from the

defendants

All the defendants thought we should be happy

with whatever information we got from them to

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do with the deaths of people with learning difficulties and

autism.

All the defendants except CQC had nothing more to say about

breaking the law.

CQC could not collect more or better information

of people with learning difficulties and autism

dying from covid-19. Easy read information about

deaths of people with learning difficulties is on the

website.

The defendants are asking us:

To wait and see what information they are going to

publish about the deaths of people with learning

difficulties / autism from covid-19.

Where does this leave us?

The claimants view about the Government and

NHSE reply is

We have no confidence in poor information turning into

good and useful information if it’s badly collected and

recorded in the first place.

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Our second letter sets out why all the defendants are

still breaking the law and what information we still

need.

The deadline for defendants’ replies is 15th

June.

We will let you know what are next steps are.

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What has happened since 8th

June 2020?

The NHSE, NHS Digital, Secretary of State for Health

and Social Care, Public Health England and UK

Statistics Authority (all the defendants) have not given

us any new information about people with learning

difficulties and autism dying from covid-19.

Our legal team have written again to all the

defendants. We are asking them again for all the

information we want about the deaths of people with

learning difficulties and autism.

NHSE information includes

NHS funded learning disability and autism

and hospital service users with learning

difficulties had been test for or death

certificate saying covid-19.

What is the problem with NHSE information about deaths

from covid-19?

Collected information about people with learning

difficulties/autism died in hospitals.

It seems that the NHSE information will not include many

community services users with learning difficulties/autism.

Unclear if the reporting is required by law.

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The poor recording of people with autism means that some

people with autism may not be counted for.

The daily and weekly information does not include the person’s

health conditions, age, local area and NHS Trust.

LEDER information includes

People with learning difficulties and autism

died from covid-19 in hospital and other

community care settings.

What is the problem with LEDER information about deaths

from covid-19?

There is no law making LEDER collect information about

everyone with learning difficulties and autism died

from covid-19

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Assuring Transformation Collection and Mental Health

Services Data Set information includes

Psychiatric hospital in-patients with

learning difficulties / autism died in these

settings.

All the information provided has a poor

recording of someone with autism.

What is the problem with AT and MHSDS information about

deaths from covid-19?

The information provided is not the same from both

organisations.

Information does not say whether the inpatients died

from covid-19.

CQC (published by ONS and UKSA)

information includes

Deaths of people with learning difficulties or

autism in registered case services such as

hospitals, care homes and home care

providers.

The only one who is being helpful and

provided easy read information of the CQC’s

information about the deaths of people with

learning difficulties. .

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What is the problem with CQC’s information about deaths

from covid-19?

CQC deaths reporting form ask whether the dead

person has learning difficulties. The CQC form

does not ask if the dead person has autism.

The CQC said the problem is that the law needed to be

changed so that all service providers must tell the

CQC if someone with learning difficulties / autism

have died from anything that includes covid-19.

Public Health England (PHE) information

includes

Weekly reports of people who have died from

covid-19 without their gender, age and

ethnicity are collected.

What is the problem with PHE’s information about deaths

from covid-19?

No numbers of people with learning difficulties / autism

died from covid-19.

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We still think that the defendants are discriminating

against people with learning difficulties and

autism

NHSE must try and reduce inequality, the unfairness

that some groups of people face in accessing health

care services and to the outcomes achieved.

NHSE collects and examine information about the safety

of health services.

Secretary of State for Health and Social Care and

Public Health England must take such steps

needed to protect the public from disease or other

dangers to health. This can include doing

research and providing information and advice.

The CQC (published by ONS/UKSA) has the

power to ask service providers for information

about people with learning difficulties and autism

who have died from covid-19 as a way of checking

health, safety, and welfare of health and social

care services.

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We still think that the defendants are breaking disability

law for the following reasons:

1) Reasonable

It would be reasonable for Defendants to

collect information about people with

learning difficulties and autism deaths if

many of them are dying earlier than

everyone else from illnesses including

covid-19.

Disability Discrimination

The defendants are not allowed to treat disabled

people unfairly, in a discrimination manner.

The defendants have reported that some groups of

people who have died from convid-19.

The defendant’s failure to report on disabled people

dying from covid-19 is discrimination.

Disabled people have a human right to be treated

equally under the ECHR Article 14.

1) Public Sector Equality Duty

The defendants have a duty to reduce inequality

between disabled people and non-disabled

people. The Government have not thought about

this when deciding to not report on the people

with learning difficulties and autism deaths from

covid-19.

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None of the defendants other than CQC have provided an

equality impact assessment to say how they have considered

disability equality issues in make decisions about collecting

information about people with learning difficulties / autism died

from covid-19.

What the defendants must do if they do not

want to go to court?

The NHS law says that the NHSE must collect

information about the health and safety of people

using NHS services. The information should be

used to understand why some groups of people get

better services and protection from disease and

other dangers.

All information collected must be same. For

example everyone with learning difficulties / autism

has been tested for covid-19 or had a certificate

saying they died from covid-19.

We want a report about people with learning difficulties and

autism deaths from covid-19 in Hospitals, Care Homes,

Supported Living and living with their families or within

their own homes.

We are asking for the report to be made in easy read and

other formats for people with learning difficulties and

autism as set out in NHSE ‘Accessible information

standard’.

By Simone Aspis (Changing Perspectives)

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