Action From Learning
LeDeR Report 2021 – 2022
- What is LeDeR?
- We want to say ‘thank you’ to
- First thoughts
- Andrew’s story
- Safe and wellbeing reviews
- LeDeR champions
- Managing health problems
- LeDeR promises
What is LeDeR?
- When a person with a learning disability dies, a LeDeR review looks at the health and social care the person received.
- LeDeR is about learning from lives and deaths of people with a learning disability and autistic people.
- From early in 2022 LeDeR reviews began to look at the deaths of autistic people.
- This document is the Action from Learning easy read report which explains what we have learned from all the LeDeR reviews.
- Action from learning means learning from LeDeR reviews to make the right changes so that people live longer and healthier lives.
We want to say ‘thank you’ to
- Families and health and care workers who have taken part in a LeDeR review
- Families who have shared their memories and experiences in this report
- Health and care workers who have made the lives of people with a learning disability and autistic people better in the last year.
- Every death of a person with a learning disability or an autistic person is sad.
- This report will tell you about the good changes we have made because of what we have learned.
- So that people can live happier and healthier lives.
- In this section you can read what three people who work for NHS England think about LeDeR.
- Tom Cahill is the National Director for Learning Disability and Autism.
- “People with a learning disability and autistic people are still dying too young.”
- “LeDeR reviews show us what needs to change.”
- “I will work to make sure health services learn from LeDeR reviews and do things better.”
- “This report shows how working together can lead to people with a learning disability and autistic people living better and healthier lives.”
- Dr Roger Banks is the National Clinical Director for Learning Disability and Autism.
- “It is important that people are more involved in their care.’’
- “We know that coronavirus has had a big effect on people.”
- “This makes the NHS want to do much more to make care better.”
- “This year we have started to look more closely at the lives and deaths of people from minority ethnic groups.”
- “Minority ethnic groups means people who are not White British.”
- “The NHS is making sure that reasonable adjustments are made for everyone who needs them.”
- “Reasonable adjustments means making it easier for disabled people to use the NHS.”
- Carl Shaw is a Learning Disability and Autism Adviser
- “I work as a learning disability and autism adviser for NHS England.”
- “I think it is really important that LeDeR reviews are now being done for autistic people.”
- “Over the next year I would like healthcare professionals to learn more about the different needs of:
- people with a learning disability
- autistic people.”
- A new video has been produced in the North East of England after a LeDeR review. See Me, Andrew’s Story : on YouTube
- The video tells health and social care staff and everyone else to:
- listen to people with a learning disability
- question their ideas about doing the right thing for people with a learning disability.
- The video is about the experiences of Andrew who died in early 2020.
- The film was produced by the local drama group MiXiT.
- Andrew was 51 but was very frail and he lived with Down’s syndrome.
- Andrew went into hospital with a very bad urine infection.
- He was not getting better from the urine infection and staff did not find out why he was still ill.
- Staff thought Andrew was acting differently because of his dementia and learning disability.
- So staff did not work out that he had two broken hips.
- County Durham Clinical Commissioning Group and County Durham and Darlington NHS Foundation Trust are sharing Andrew’s story to show that:
- reasonable adjustments should be made for people with a learning disability and autistic people
- no-one should assume how autistic people and people with a learning disability behave.
- Andrew’s family agreed for the video to be made.
- His family hope Andrew’s story will change how health and care staff think about people with a learning disability and autistic people.
- The video was made to be Andrew’s voice because he could not speak when he was alive.
- The video was made to help people understand how to:
- see the person, not their learning disability or autism
- ask the right questions
- look out for problems so they do not get missed.
Safe and wellbeing review
- Extra checks were made last winter on people with a learning disability and autistic people in mental health hospitals.
- The checks made sure:
- people were safe and well
- any safety concerns were sorted out in the right way
- The information found from the checks is being used to make services better for people with a learning disability and autistic people.
- Every area in England will have a LeDeR champion.
- The LeDeR champions in the areas across England will:
- check that the NHS is making care better for people with a learning disability and autistic people
- take action if they do not think services are getting better.
- The LeDeR champions also have to tell us what they are doing to make care better for people from minority ethnic groups.
- People with a learning disability are more at risk of becoming seriously unwell if they get coronavirus.
- The NHS has found a lot of new ways to support vulnerable people with coronavirus.
In the last year the NHS:
- made sure that people with a learning disability could have coronavirus vaccines sooner than other people
- made lots of films and other types of information about coronavirus vaccines
- made sure that invitations for coronavirus vaccines were easy to understand
- helped to make the coronavirus vaccine booking service easy to use
- helped to train staff so that everyone has a good experience when they go for their coronavirus vaccine
- worked with Misfits Theatre company to make a film about how important it is for people with a learning disability to get the vaccine.
‘Misfits vaccine NHS’ on YouTube
- made sure that people who could not go to a vaccine centre could still get their vaccine:
- at home
- at a place better suited to their needs
- made sure that people who are at high risk of becoming seriously unwell from coronavirus could get new treatments.
Managing health problems
- Breathing problems
- Flu vaccines
- Noticing when someone is becoming very unwell
- Annual health checks
- The health of people from minority ethnic groups
- Do Not Attempt Cardiopulmonary Resuscitation or DNACPR
- Reasonable adjustments
- Misfits film
- Breathing problems cause a lot of people with a learning disability to die too soon.
- There is a health problem called dysphagia which lots of people with a learning disability have.
It means you find it difficult to swallow and can affect your breathing.
- Food or other things can get in your lungs if you have problems swallowing and lead to an infection called aspiration pneumonia.
- A guide on pneumonia and aspiration pneumonia was written by the British Thoracic Society.
- The British Thoracic Society is a team of:
- The team worked with people with a learning disability and their families.
- The NHS is also writing information to help healthcare staff so they can:
- stop people getting pneumonia
- give people the right treatment.
- Hospitals will get extra money for treating people with pneumonia properly.
- Flu vaccines are still very important for people with a learning disability
- LeDeR reviews say people with a learning disability sometimes miss out on treatments such as flu vaccines which help to stop serious illness.
What the NHS has done this year
- Supported people to get their flu vaccine at the same time as their coronavirus vaccine.
- By February 2022 the flu vaccine had been given to 3 out of every 4 people with a learning disability who needed it.
- Updated information about the vaccine.
Gave doctors (GPs) an easy read letter to invite people to get their vaccine.
Noticing when someone is becoming very unwell
- LeDeR reviews have told us that:
families and carers can tell when the person they care for is getting more unwell
- families and carers need to know how to quickly get the right help for the person they care for.
- The NHS has worked with:
- The Royal College of Physicians
- The Society for Acute Medicine
- Both organisations are groups of doctors, nurses and scientists
- We asked both organisations to make a document for healthcare professionals who:
- work in hospitals
- give emergency care to people with a learning disability.
- The Royal College of Physicians put this document out on 1 April 2022.
- Constipation is when you find it difficult to poo.
- Some people with a learning disability are more likely to have problems with constipation.
- People with a learning disability are often given medicine to treat constipation.
- There is a project to tell people more about constipation.
- The project will help people understand how to:
- treat constipation
- stop someone getting constipated
- find out if someone is constipated.
- People with a learning disability are less likely to die of cancer.
- But LeDeR reviews found out that it takes a long time for people with a learning disability to find out if they have cancer.
- One of the reasons for this is that a lot of people with a learning disability do not get cancer screenings.
What the NHS did in the last year:
- put out new information about cancer screening
This information explained how the NHS can make breast cancer services easier for everyone to use.
- asked doctors (GPs) who is on their learning disability register so that the cancer screening programme has this information
- looked at the invites and follow up letters from the NHS cancer screening services to make sure they are easy to understand
- gave doctors (GPs) new information to make sure autistic people and people with a learning disability have their cancer screening.
- made sure that NHS information about cancer screening on the television and internet is:
- easy to understand
- includes people with a learning disability
- offered lung screening for some people who used to smoke to see if they might have lung cancer
- made sure that surveys about patient care are easy to understand
- worked with Prostate Cancer UK and checked their easy read information.
- Epilepsy is a condition that affects the brain and causes seizures.
- Seizures can change how a person:
- Lots of people with a learning disability have seizures.
- SUDEP Action are a charity that gives advice on how to stop people dying too young from epilepsy.
- SUDEP Action has a safety checklist which you can watch as a video on their website
- The NHS gave money to SUDEP Action to make the checklist easier to understand.
- The NHS has been working with NICE on new guidelines for finding and managing epilepsy
- NICE is short for the National Institute for Health and Care Excellence.
- NICE find out what works well in health and social care and comes up with guidelines and advice.
Annual health checks
- The NHS wants everyone with a learning disability who wants an annual health check to have one
- Annual health checks can find health issues before they become a big problem.
- We know that lots of good work was done across the country because many more people had an annual health check last year.
- We are making sure that people with a learning disability who are in prison for longer than a year can also get an annual health check.
The health of people from minority ethnic groups
- LeDeR tells us that people from minority ethnic groups with a learning disability die younger than white people.
- We know that not everybody from minority ethnic groups is on their GP learning disability register.
- We are working with other organisations to change this.
- The NHS have employed someone to make sure more people from minority ethnic groups get the right care at the right time.
- The NHS are working with three organisations to help us understand how to make health care better for people from minority ethnic groups with a learning disability.
- The three organisations are:
- Learning Disability England
- The Race Equality Foundation
- and The NHS Race and Health Observatory.
- This work looks at:
- how the NHS works with people, families and carers
- how local areas can support people to be treated fairly.
- A report on this work will come out later in 2022.
- The NHS Race and Health Observatory is finding out how people from minority ethnic groups get healthcare.
- The NHS Race and Health Observatory carries out research to find out if minority ethnic groups get a different health and care service to everyone else
- Local areas are working to understand how many LeDeR reviews there should be about people from different minority ethnic groups in their area.
- Local areas need to have a plan to make sure that people from minority ethnic groups get the same level of care as other people
Do Not Attempt Cardiopulmonary Resuscitation or DNACPR
- Cardiopulmonary resuscitation or CPR is when someone tries to make a person’s heart start again if it stops.
- DNACPR is short for Do Not Attempt Cardiopulmonary Resuscitation.
- If people do not want to be resuscitated, they can choose to have a DNACPR.
This means a health professional will not try to start their heart again if it stops.
- A decision about DNACPR is a personal choice and must only be made by talking to the person.
In some cases their family or carers might be involved in the decision.
- The NHS is doing more work to make sure that DNACPRs are put in place correctly and matches the persons own choices.
- The NHS wants more information about reasonable adjustments on the electronic records for people with a learning disability and autistic people.
- This is called a digital flag and can help medical staff to:
- make sure services are easier to use
- make hospital visits a better experience.
- Before all of the NHS starts using the new digital flag a group of organisations will try it out over the next year to see how well it works.
- We asked Misfits Theatre Company to make a film about reasonable adjustments for healthcare professionals.
- reasonable adjustments nhs, on youtube.com
- Psychotropic medicine is medicine that can change your:
- thoughts, mood, feelings
- the way you behave.
- This medicine is given for different reasons such as:
- mental health conditions
- sleep problems
- People with a learning disability and autistic people are more likely to be given these medications.
- Sometimes people are given medication to change their behaviour.
- Sometimes people with a learning disability are given too much medication.
- Sometimes people with a learning disability take the medication for a long time.
- A big campaign called STOMP-STAMP is trying to make sure that people get:
- the right medication at the right time
- only when they need it.
- The campaign is looking at other ways to support people who take psychotropic medication.
- We have worked with the National Autistic Society to make STOMP information for autistic people and their families that explains:
- psychotropic medicine
- medication reviews
LeDeR promisesIn the next year the LeDeR team will:
- Work with people who run:
- cancer screening services
- cancer treatment services
- cancer screening services
- Check that DNACPR forms are being completed correctly
- Support local services to use the new NHS information pack on breathing problems
so that care for people with a learning disability and autistic people will get better.
- Find out why people with a learning disability and autistic people are more likely to:
- get high blood pressure
- have problems with their heart or blood vessels.
- get high blood pressure
- Find out if putting hospital passports on mobile phones or computers makes them easier to use
- Work with other organisations to train more carers and staff so they can quickly notice
when a person with a learning disability or an autistic person becomes unwell.
- Make an information pack about using CPAP machines for:
- people with a learning disability
- autistic people
- their carers.
- Start a social media campaign to give these groups useful information on preventing and treating constipation:
- people with a learning disability
- autistic people
- health professionals.