What we think about the government’s response to the Learning Disabilities Mortality Review (LeDeR) programme

This is what the 3 Co-Chairs of Learning Disability England’s Representative Body think about the report from the government.

We thought about what our members have told us about these issues and what is important.

It is good to see the government say how it will act on the recommendations. We are very pleased because not hearing anything can make people think that people with Learning Disabilities dying younger than non-disabled people is not important.

We think there is a lot in the plans to make us think the government are taking this seriously, but we think there are some things missing.

How people are treated could still not change even with the actions in this report. We think people’s attitudes and how people in organisations think altogether are at the heart of what needs to change.

For example, it is good that the report talks about joining up health records saying, “these records should include information about a person’s medication and any allergies or adverse reactions to medicines that they may have”. We know though that people and their family members are often not listened to so changing the records could still mean people do not get good care or even die. One time this happened was when Paula McGowan tried to share information about her son Oliver with doctors and nurses responsible for his care, but she was not listened to and Oliver died.

We think that there needs to be action to make sure people with learning disabilities and their families are listened to and taken seriously. We saw that this report talks about learning and that is good, but it does not talk about listening to people.

Training for staff is a good thing and we support that, but we think it must be developed and led by self-advocates and family members. This can help change what people think about people with learning disabilities and help staff take them and their families seriously. If it is training delivered by self-advocates face to face it can help people, make the changes to how they act not only understand the policy or the theory.

The report says there will be an oversight group that includes self-advocates and families but it does not say how the targets will be checked and who will decide if the changes to how services run, and staff act are happening. We would really like to see people with learning disabilities and their families as equal partners in setting those targets and deciding if change is happening the right way.

A good healthy life means everyone working together with people with learning disabilities, family members, support and health providers. National and local leaders taking responsibility is important in this too. We think that bringing those people together can bring good solutions.

We want the government to set a date by when they hope people with learning disabilities will not die up to 29 years before non-disabled people.

Our main points are:

  • It is very good the government are taking action from the Learning from deaths reviews so far
  • The actions being taken are good we think
  • These actions could still mean the most important changes still do not happen. Policies depend on how people act towards people with learning disabilities and their families
  • We think the most important changes to make are in how people are respected and listened to by all staff and services
  • We want the training to be developed and led by people with learning disabilities and their families
  • We want people with learning disabilities and families to be part of checking the changes are actually happening
  • We want it to be very clear how and when the changes will mean people will stop dying earlier because of poor care

Find out more about this

The government have written a report saying what they will do after the 2nd annual report of the Learning from deaths review (LeDeR)

You can read the report here


You can read the Learning from deaths annual report here


Learning Disability England wrote to the social care minister about the delay in the government acting on this

You can see that here   https://www.learningdisabilityengland.org.uk/news/action-to-stop-people-dying-early/