Action from learning: What happens with reviews once they are completed?

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

NHS England and NHS Improvement 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 cause of death of a person with a learning disability. 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 to reduce health inequalities.

We call this action from learning.

From the reviews which have been done so far, we know that we need to do more work in these areas:

  • respiratory conditions
  • epilepsy
  • sepsis
  • constipation
  • cancer
  • Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)
  • deaths of people from BAME communities

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

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.

We know that 41 per cent of people with a learning disability are dying with pneumonias.

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 pneumonia.

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.

Sepsis

Sepsis is when your body reacts badly to an infection. We know that 7 per cent of deaths of people with a learning disability which are reported to LeDeR are due to sepsis. Our work to stop people with a learning disability dying from sepsis includes training 5000 paid and unpaid carers in the use of RESTORE 2™, a tool that will help them to identify the early signs of deterioration in people with a learning disability.

We have also developed a range of resources about how to avoid sepsis, spotting the signs of sepsis and problems after sepsis with information about what to do if you are worried.

Deaths of people from BAME communities

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

We will ask local LeDeR steering groups to identify a BAME lead in their area and we will explore the inclusion of the needs of people with a learning disability from BAME communities in the revised NHS Equality Delivery System.

Easy read leaflets

Films

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.

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.

Nicola’s story

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

Cancer

Cancer is a disease that makes your body change and can make you very poorly.

We know from the deaths that have been reviewed as part of LeDeR that gaps in services and support may have contributed to the death of some people with a learning disability.

Across the NHS local systems and partnerships are working together to find ways that cancer screening can be made more accessible  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.