Local areas use the findings of their LeDeR reviews to make changes to services locally to help prevent people dying from things which could be treated and prevented. ICBsproduce annual reports which describe their local action from learning.

NHS England also looks at all the good practice and system changes once a year and produces an Action from learning report.

Each LeDeR review gives us information about the life and death of a person with a learning disability or an autistic person. From all of the information we learn we look at what we can do nationally to impact on the health of people with a learning disability and autistic people to reduce health inequalities.

We know that we need to do more work in these areas:

• deaths of people from minority ethnic communities
• respiratory conditions
• cancer
• Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)
• epilepsy
• spotting early signs of deterioration
• constipation

LeDeR reviews are one part of how we are reducing health inequalities for people with a learning disability and autistic people and improving services. We are also doing work on annual health checks, STOMP, Ask Listen Do and reasonable adjustments through the digital flag.

LeDeR and coronavirus

These documents show the number of deaths reported to the LeDeR programme by date of death where the person notifying the death has indicated that coronavirus is suspected or confirmed as the cause of death.

It is important to note that LeDeR is a voluntary reporting scheme and it is likely that the data may be subject to revision as new notifications are made. This publication is to supplement the weekly update that shows the number of people with a learning disability and autistic people who have tested positive for coronavirus and died in a hospital in England.

Respiratory conditions

A respiratory condition is when you have a problem with your lungs and breathing – this includes aspiration pneumonia and bacterial pneumonia. Pneumonia is a common cause of death in people with a learning disability.

To stop people with a learning disability dying from pneumonia we are:

• Working with other organisations to make sure that people with a learning disability, their families and carers can get a free flu vaccine and information on why it is so important. This includes producing easy read information about flu.
• Working with an organisation called the British Thoracic Society to help us write some advice to help make sure that doctors know the best way to care for someone with a learning disability who has pneumonia. The information will come out later this year.
• NHS RightCare are producing some information to help people understand how they should be managing aspiration This will provide guidance on what good care should look like and compares it to what happens if things go wrong. It will also support health systems to understand the key actions to take, and includes information about education and training for staff as well as practical advice and guidance.

Epilepsy

The RightCare epilepsy toolkit supports health systems to understand the priorities in epilepsy care and key actions to take, and includes information about education and training for staff as well as practical advice and guidance on caring for people with a learning disability who have epilepsy.

Deaths of people from minority ethnic communities

We know from LeDeR reviews that we need to do more work on the deaths of adults and children from minority ethnic groups.

ICB LeDeR governance groups are expected to identify a lead to ensure there is a focus on the deaths of people with a learning disability and autistic people from minority ethnic communities.  .

We have commissioned The Race Equality foundation to work with people with a learning disability from minority ethnic communities to better understand the inequalities they face and identify targeted actions to address these.

Learning Disability England have been commissioned to work with self advocacy organisations and carer organisations to ensure the provision of culturally competent and inclusive support and to encourage uptake of the COVID-19 vaccination among people from minority ethnic groups.

With the Race Health observatory we have jointly commissioned the University of Central Lancaster (UCLAN) to review policy and guidance about healthcare and  people from minority ethnic communities and their impact on the experience of people with learning disability with recommendations to address gaps.

Films

• Soft signs of deterioration

Constipation

Constipation is having problems with pooing.

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

We have developed a set of resources to help people understand more about constipation and how to prevent, recognise and treat it.

• Trouble pooing – easy read
• Poo matters – information for families and carers
• Poo matters – information for health professionals

We worked with an organisation called Books Beyond Words to make a book called ‘The trouble with poo’ to help people with a learning disability improve understanding the risks of constipation and to know when to get help.

Later this year we will be running a national campaign to make more people aware of the risks of constipation for people with a learning disability.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

It very important that people are supported to talk about what they want and need if they become seriously ill and if they reach the end of their life. Some people will need reasonable adjustments to be able to do this.

What people want and need should be recorded and shared. This might be in an ‘advance care plan’. Sometimes making an advance care plan includes thinking about and making a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision. This might happen with a doctor or nurse who knows the person well.

We have always been clear that people should not have a DNACPR on their record just because they have a learning disability, autism or both.  This is unacceptable. Every person has individual needs and preferences which must be taken account of and they should always get good standards and quality of care.

In April 2020 senior leaders from NHS England and NHS Improvement sent a joint letter to health staff  to remind them of this. Also a joint statement from NHS England and NHS Improvement and Baroness Campbell in May 2020 showed the importance of decisions around care and access to treatment, being made on an individual basis and that blanket decision making is never acceptable.  (Blanket decision means making a decision about a group of people at the same time because they have similar characteristics like having a learning disability, autism or both.)

If you have any concerns about a DNACPR on your medical record, you should talk to the doctor involved. If you are still concerned, you, your family, carer or advocate may wish to make a complaint. More information on how to make a complaint is available on the NHS.uk website  You might also find the Ask Listen Do web pages helpful.

Learning Disability England and Turning Point have also been developing resources about DNACPRs for people with a learning disabilities, their families and support staff.