Action from learning

Learning into action is what we call all the work the NHS is doing to stop people with a learning disability dying too soon.

In Spring 2018 NHS England set up the Learning into Action group who are looking at what has been learned from learning from deaths reviews (LeDeR).

The group has people from NHS trusts, government departments and other interested people on it.

From the reviews which have been done so far, we know that people with a learning disability are dying from:

  • aspiration pneumonia
  • pneumonia
  • sepsis
  • constipation
  • dysphagia
  • epilepsy

We also know there are sometimes problems with using the Mental Capacity Act for people with a learning disability.

We are also looking at ways of making sure we know when new issues are coming out of the reviews and how our work on annual health checks, STOMP, Ask Listen Do and digital flagging fits with this work.

Sepsis

Sepsis is when your body reacts badly to an infection:

We know that too many people with a learning disability are dying from sepsis.

The sepsis group is looking at:

  • How people can be helped to spot the signs of sepsis sooner so that they can get treatment quickly.
  • How important information about people can be shared with health and care staff.
  • How to share what is working across different organisations

We have worked with Sherwood Forest Hospitals NHS Foundation Trust to develop a set of films about spotting the signs of sepsis and what to do if you are worried someone has sepsis.

Sepsis information for People with a Learning Disability – Aimed at people with a learning disability, autism or both and describes the symptoms of sepsis and what to do if you are worried.

Sepsis information for family and carers of People with a Learning DisabilityAimed at unpaid or family carers of people with a learning disability, autism or both describing the symptoms of sepsis in more detail and things to look for in a loved one, it gives carers advice on what to do if they suspect sepsis.

Sepsis information for paid carers/professionals of People with a Learning Disability – Describes in more medical terminology, the symptoms of sepsis and why it is important to think about sepsis in people with a learning disability based on the findings of LeDeR reviews, which has concluded that sepsis is a major cause of death in people with a learning disability.

Soft signs of deterioration – Soft signs of Sepsis. Focusses on the ‘soft signs’ of acute deterioration that can be picked up by relatives and also by professionals caring for people with learning disabilities.

Mental Capacity Act

The Mental Capacity Act (MCA) can help protect and give power to people who might not be able to make some decisions for themselves.

The MCA group is looking at how to:

  • tell more people about the Act.
  • help people understand the Act better so they know when and how to use it.
  • Help people understand the difficulties that people with a learning disability can face when it comes to the Mental Capacity Act.
  • share what is working across different organisations.

Constipation

Constipation is having problems with pooing.

We know from reviews that too many people with a learning disability are dying from constipation.

The constipation group is:

Nicola’s story

Hear about Nicola’s story from the learning disability acute liaison nurses.

Film from Liverpool Royal

This video shows how learning from deaths of people with a learning disability (LeDeR) is used to improve care in an acute hospital setting.

How we tell people about this work

The University of Bristol work with us on the LeDeR programme and they send out regular newsletters to more than 3,000 people.

So far, newsletters have been about:

  • Aspiration pneumonia (This is a really serious chest infection you can get when food goes down the wrong way).
  • Recognising when a person is becoming more poorly (including sepsis).
  • Constipation.
  • Mental Capacity Act.

All the newsletters can be found on the University of Bristol website.

Sharing information online

The Learning into Action programme set up an online network to share resources and knowledge and talk to each other more easily across the country.

Anyone from a health or social care organisation, education, research or voluntary organisation can join the network. More than 200 people are already using the network.

Learning and sharing

We know that the LeDeR reviews are already starting to give us the information we need to make services better for people with a learning disability.

It is important now that information from the reviews is used in local areas to make a positive difference to the lives of people with a learning disability and their families.

To do this we have held events across the country to bring people together to talk about what has been found out during reviews.

What are your plans for the future of this work?

We know there is still work to do to make sure that the things we are learning can make a difference to people’s lives.  This includes:

  • Working out a way to take the learning from reviews which is the same for everyone.
  • Making sure that LeDeR reviews, and other investigations that are required by the law, are linked together when they need to be.
  • Working with people with a learning disability and families through programmes like “Ask, Listen, Do” to find out whether people are seeing changes in services linked to the themes and recommendations from LeDeR reviews (for example, sepsis, constipation or aspiration pneumonia).
  • Collecting evidence for health and care services so that they can understand that caring for people with a learning disability and their families is everyone’s business.
  • Making sure that we know what is changing and where so that we can tell if the LeDeR programme is helping people to live longer, heathier, happier lives.