Written by Jen Morris, PBS4 Specialist Clinical Practitioner
Research has shown that on average people with a learning disability and/or autism die earlier than the general public and do not receive the same quality of care as people without a learning disability or who are not autistic.
What is LeDeR? LeDeR is a service improvement programme for people with learning disabilities and autism.
What is the purpose of LeDeR?
. To improve care for people with a learning disability and/or autism
. Reduce health inequalities for people with a learning disability and/or autism
. Prevent people with a learning disability and/or autism from an early death.
A LeDeR review looks at key episodes of health and social care the person received that may have been relevant to their overall health outcomes. LeDeR looks for areas that need improvement and areas of good practice. LeDeR uses these examples of good practice to share across the country. This information is then used to improve services for people living with learning disabilities and autistic people.
The LeDeR programme involves many different organisations including:
. NHS England
. Integrated Care Board
. LeDeR Governance
. People with a learning disability, families and carers
. GPs
. Hospital trusts
. Social care organisations
. Other healthcare professionals
What does the 2021 Annual LeDeR report show?
. 3,304 people with a learning disability died in 2021, 208 were deaths of children aged 4-17 years and 3,096 deaths of adults aged 18-98 years.
. 2,681 of those deaths were people with a learning disability with co-existing long-term conditions such as epilepsy, cardiovascular conditions, diabetes, mental health conditions etc.
. It’s most common to have 2 or more long-term health conditions.
. 56% of deaths reported were male and 44% of deaths were female.
. Quality of care concerns in primary and community care centred around missed or late diagnosis of potentially treatable disorders. At times, there was a lack of monitoring and review of established conditions. One example mentioned explained being prescribed medication without adequate review.
On average, males with a learning disability die 22 years younger than males from the general population, and females 26 years younger than females from the general population.
. The average age of death for people with a learning disability in 2021 was 62 years of age.
. 6 out of 10 people with a learning disability died before they were 65. This compares to around 1 in 10 of the general population
. Over 50% of people with a learning disability died in areas rated as some of the most deprived in England
. 61% of deaths occurred in hospital
Top 5 categories of cause of death reported in the 2021 Annual LeDeR report:
1) COVID-19
2) Diseases of the circulatory system
3) Diseases of the respiratory system
4) Cancers
5) Diseases of the nervous system
. The percentage of respiratory deaths due to pneumonia decreased from 52% in 2018 to 21% in 2021
. Epilepsy was the most common long-term health condition associated with an earlier age of death
. 49% of deaths were rated as ‘avoidable’ for people with a learning disability, this compares to 22% of the general population
. 8% of deaths were avoidable were linked to cancer
. 14% of deaths were avoidable were linked to hypertension
. 17% of deaths were avoidable were linked to diabetes
. 17% of deaths were avoidable were linked to respiratory conditions
. COVID-19 was the leading cause of death for people with a learning disability in 2021.
. 28% of those who were unvaccinated died from COVID-19 compared to 3.4% of those who were unvaccinated.
. Those who were unvaccinated were 9 times more likely to die of COVID-19 than those who were vaccinated.
What does the LeDeR report tell us?
. 9 out of 10 reviewers indicated that the care package provided met the needs of the individuals in death.
. Acute liaison nurses in acute hospital settings were valued as a bridge between the principles and provision of good care
. 7 out of 10 reviews indicated evidence of good care
. 75% of people had a check within 12 months before they died
. 3 out of 10 reviews indicated that people with a learning disability who did not receive good care explained that this was due to carers finding it difficult to notice when the person was ill and sometimes staff did not make reasonable adjustments for the person
The report highlights that people with a learning disability are more than twice as likely to die before their time.
Next year the LeDeR report will include data for the first time exclusively about autistic people and will contain more detail about the lives people led. The LeDeR programme continues to highlight the significant health inequalities people with learning disabilities face and the reason more needs to be done to ensure people receive the specialist support they need to achieve equitable outcomes.
Anyone can report a death, by submitting a notification to LeDeR via the website (www.leder.nhs.uk)
If you have any questions, please feel free to drop us a message on any of our social media platforms, or email Jen.morris@pbs4.org.uk.
