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We know that for people with learning disabilities, there is lots of bad practice around DNR decisions.
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Since the outbreak of Covid-19 we have worried this might have got worse.
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This is our latest update on DNR decisions.
It talks about what we know is happening and what can be done to challenge bad decisions.
What is a DNR?
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A Do Not Attempt Cardio Pulmonary Resuscitation order is a medical document.
They are sometimes called DNACPR or DNAR or DNR.
DNACPR is the official name. On this page we are going to call it DNR because its more accessible.
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It means that if someone’s heart stops working doctors will not try to restart it.
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Doctors should only put a DNR order on someone’s file if they believe someone is dying and there is no chance they will get better.
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If doctors do not think restarting someone’s heart will help them get better, they will create a DNR order.
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You and your family should be included in decisions about this.
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No one should have a DNR put on their file just because they have a learning disability.
The LeDeR report
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In July the LeDeR report for 2019 came out.
The LeDeR report looks at all the people who have a learning disability who have died in the last year.
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It is to help us think about why people have died and how we can stop preventable deaths.
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Of the deaths looked at in the report, 16% had a DNR decision that did not follow the proper guidelines.
The report confirms that illegal DNR decisions happened in 2019.
LDE Surveys
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Because we know things were going wrong with DNRs in 2019 we have been worried that it might have got worse because of coronavirus.
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In April we asked members if they had seen any changes in how many people were given DNRs.
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18 organisations had seen DNRs placed in people’s medical records without consultation in March and April.
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About 66% of the organisations replying did not report an increase in DNRs in 2020 for the people they support.
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We asked members again over May and June if they had seen any changes.
Less members told us what they were seeing in this survey.
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We asked people to think about the kinds of DNR decisions they saw last year and the kinds they saw this year.
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We asked, have you seen people or their families having an informed choice about having a DNR notice in place?
This means that people were included in making the decision and understood what was happening.
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3 organisations saw less people in this situation than last year
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3 saw similar numbers to last year
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6 saw more people in this situation than last year
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We asked, have you seen any blanket DNR decisions being made without the person or their family’s being involved?
A blanket DNR decision means that a doctor has made the decision because someone has a disability and not because they need a DNR.
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2 organisations saw less people in this situation than last year
![](https://www.learningdisabilityengland.org.uk/wp-content/uploads/2020/08/blue-arrow-1-e1597846144361.png)
6 saw similar numbers to last year
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4 saw more people in this situation than last year
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The NHS has said no blanket decisions should be made.
We are worried that 10 organisations have seen blanket decisions happen.
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![](https://www.learningdisabilityengland.org.uk/wp-content/uploads/2020/06/NHS-FIile.png)
We asked, have you seen any DNR orders on people’s medical records where they and their families didn’t know about it?
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2 organisations saw less people in this situation than last year
![](https://www.learningdisabilityengland.org.uk/wp-content/uploads/2020/08/blue-arrow-1-e1597846144361.png)
5 saw similar numbers to last year
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5 saw more people in this situation than last year
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We are glad that some organisations have seen DNRs being used properly and less bad practice.
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We are worried that some organisations have still seen blanket decisions being made or decisions made without people being involved.
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It is important that we understand our rights around DNR decisions so we can make that they are lawful.
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We know this survey doesn’t tell us everything that’s happening.
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It does tell us that some people were seeing bad practice last year and that it is still happening now.
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We have helped make a guide, so people know their rights and how to challenge bad decisions.
A Guide on how to challenge DNRs
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We wanted to make sure people know their rights and can challenge doctors if DNRs are put in place when they shouldn’t be.
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We have made this guide in partnership with Turning Point.
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The guide has
- Information about the law and human rights
- A checklist to help you think about what you can do to challenge DNRs
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- Template letters for challenging or getting doctors to help
- Example DNR form so you know what it looks like.
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Here is an easy read about rights.
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Here is an easy read about the questions you can ask to challenge
We have two versions of the full pack.
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There is a interactive digital of the pack which you can view here.
This version helps you identify your issue and takes you to the right template.
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There is also a printable version. You can view it here.
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You can download this report by clicking here