What is LeDeR?
LeDeR is a service improvement programme led by NHS England looking at the lives and deaths of people with a learning disability and autistic people. LeDeR aims to improve health and social care, reduce health inequalities and prevent premature mortality, by reviewing information about the health and social care support that people received throughout their lives and prior to their deaths.
LeDeR reviewers look at the health and social care a person received to identify areas of good practice and areas that need improvement, and doctors may be asked to share information with LeDeR or have a conversation with a LeDeR reviewer as part of that process.
LeDeR reviews are shared with multi-agency LeDeR governance groups in each Integrated Care Board (ICB), to share the learning and inform local action plans to improve access, experience, and outcomes for future patients.
Why is LeDeR needed?
LeDeR data shows that:
- people with a learning disability die, on average, over 20 years younger than the general population
- 42% of deaths of people with a learning disability in 2022 were deemed 'avoidable' (ie, preventable or treatable) compared to 22% for the general population
- the Mental Capacity Act was incorrectly followed in 25% of deaths of people with a learning disability in 2022, where it was deemed relevant
- concerns about the overall quality of health or social care were identified by reviewers for 25% of deaths of people with a learning disability in 2022
- DNACPR documentation and processes were judged to have been followed incorrectly for 37% of deaths of people with a learning disability in 2022, where a DNACPR was in place.
What did LeDeR find in 2022?
Around a quarter of all people with a learning disability who died in 2022 and who had a LeDeR review lived in the most deprived communities in England. The median age of death in 2022 for people with a learning disability was 62.9 years old.
The top causes of death (by ICD-10 chapter) were:
- circulatory diseases 16.7%
- cancers 14.5%
- respiratory conditions 14.6%
- conditions of the nervous system 13.6%
- congenital malformations and chromosomal abnormalities 13.5%
- other 27.3%
Some other key data from the report:
- As stated, 42% of deaths of people with a learning disability in 2022 were deemed 'avoidable'. The most common causes of avoidable death were cardiovascular conditions, respiratory conditions and cancers.
- People with a learning disability from minority ethnic communities die significantly younger than those who are white British.
- 39% of people with a learning disability who had a LeDeR review in 2022 had a mental health condition, 28% had cardiovascular disease, 37% had epilepsy and 29% had dysphagia.
- Cardiovascular conditions and osteoporosis were the long-term conditions with the most significant association with an avoidable cause of death.
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How does LeDeR operate?
Notifications
Deaths of people with a learning disability and autistic people aged 18 years and over are notified to LeDeR by health and social care staff, administrative staff, family members or anyone who knew the person. You can notify deaths via the LeDeR website.
Integrated care boards (ICBs) commission reviewers to undertake an initial review of the person's health and social care prior to death and any relevant care throughout their life.
Initial vs focused reviews
All notified deaths are subject to an initial review, which includes:
- a guided conversation with the family member or someone close to the person who died
- a detailed conversation with the GP or a review of GP records
- a conversation with at least one other person involved in the care (e.g., healthcare professional, hospital mortality reviewer etc).
Because data shows us that the following groups of people have significant health inequalities, a more in depth, focused review will be carried out where:
- the person who died was:
- from a minority ethnic community
- subject to mental health or criminal justice restrictions in the five years prior to death
- autistic with no learning disability
- in the reviewer's professional judgement, there is likely to be learning from a focused review
- there are concerns about the quality of care provided or evidence of a lack of co-ordinated care
- a family member has requested a focused review.
42% of deaths of people with a learning disability in 2022 were deemed 'avoidable'.
Other review and investigation processes
Reviewers consider carefully whether any other processes, such as safeguarding, complaints or serious incident investigations should be conducted alongside or in place of a LeDeR review. LeDeR is a service improvement programme, and therefore, where appropriate, its review may arrive at different learning and recommendations to other reviews or investigatory processes.
The child death review (CDR) process reviews the deaths of all children, including the deaths of children with a learning disability and autistic children.
Involving families
Bereaved family members or someone who knew the person well will be meaningfully involved throughout the LeDeR process. As a result, family members will be able to see a precis of clinical notes within the LeDeR review when it is completed.
How LeDeR findings are used
Each ICB has a LeDeR governance group responsible for delivering actions and service improvements across health and social care, in response to learning from local LeDeR reviews and regional and national LeDeR findings. ICBs oversee a programme of actions to improve pathways, co-ordination of care and outcomes for people with a learning disability and autistic people.
What do doctors need to know and do?
Providing high quality healthcare
It is vital that doctors are aware of the health inequalities and risks faced by people with a learning disability and autistic people and proactively offer high quality preventative care and treatment, to reduce the risk of premature, avoidable mortality.
Therefore, it's important for doctors to consider the following points.
- Offer reasonable adjustments to remove any barriers that could make it difficult for people with a learning disability or autistic people to use your service.
- Look out for soft signs of deterioration. Compare presentations with the person's usual baseline function, gathering information from the person, carers, health and care passports, learning disability nurses, etc.
- Avoid diagnostic overshadowing, through assuming that behaviours, symptoms or skill deficits are attributable to the learning disability or to autism.
- Use the Mental Capacity Act and best interests processes where relevant.
- Offer proactive management and support for long-term conditions and ensure that patients and carers understand what they need to do and look out for.
- Regularly review medications; reduce and stop the use of any inappropriate medications, to reduce adverse side effects and potential drug interactions.
- Ensure that annual health checks are provided by primary care and that health action plans are followed.
- Record any reasonable adjustments needed using the Reasonable Adjustment Digital Flag.
- Be aware and ensure that others are aware that almost 8 in 10 autistic adults have a mental health condition, more than 3 in 10 have attempted suicide and more than 6 in 10 have considered suicide.
Participating in a LeDeR review
LeDeR reviewers may contact clinicians, including doctors, to ask for the person's healthcare record or specific sections of it. They may also want to speak with clinicians about the person who has died.
This is for the purposes of learning and service improvement and follows the deaths of all people with a learning disability and autistic people. Contributing to reviews will support service improvement to reduce health inequalities.
Sharing and accessing confidential information
LeDeR has approval from the Secretary of State for Health and Social Care to process confidential patient information without consent. Section 251 of the NHS Act 2006 (ref: 20/CAG/0067) is the legal basis that allows identifiable information about people with a learning disability and autistic people to be shared with the LeDeR programme after their deaths, as well as limited information about their living relatives. More information can be found on the LeDeR website.
There is no expectation or requirement for information to be redacted for the purposes of LeDeR, but the UK GDPR and Data Protection Act 2018 are applicable in relation to records of living persons (e.g. family members). LeDeR must be able to demonstrate compliance with the six data protection principles.
In terms of accessing records, the LeDeR policy 2021 recommends giving LeDeR reviewers NHS smartcards to let them access health records directly, to speed up getting the right notes at the right time, and to reduce the burden on clinical teams, especially in primary care.
Each ICB will use a Registration Authority service in their area who manage smart card access rights, and arrangements are different for accessing patient records via smartcard in different areas.
- In some areas, the registration authority (usually a Commissioning Support Unit but sometimes the ICB) needs to grant access to the practice's records.
- In other areas, the organisation's data controller (usually the practice manager in primary care) needs to grant access.
Local arrangements within the employing organisation and/or ICB will determine whether MDU members are advised that a patient's data is being accessed.
LeDeR resources
Resources supporting high quality healthcare for people with a learning disability
Dr Emily Handley-Cole
Dr Emily Handley-Cole is a clinical psychologist, employed as the health improvement senior insight manager at NHS England, in the national Learning Disability and Autism team.
She is personally and professionally passionate about supporting systems across the NHS to improve care, reduce health inequalities and prevent premature deaths amongst people with a learning disability, following the death of her brother Richard, who lost his life to a premature and preventable death in 2012, aged just 33, due to constipation after receiving poor-quality health and social care.
See more by Dr Emily Handley-Cole
Rachel Snow-Miller
Rachel Snow-Miller is head of LeDeR in NHS England’s national Learning Disability and Autism team, with over 25 years of public sector experience including service improvement.
She has previously worked as a director of commissioning for mental health learning disability and autism services, and has had a range of roles in the NHS, including in primary care workforce, where she introduced the role of clinical pharmacists in general practice.
Rachel is passionate about reducing health inequalities and improving physical and mental health. She volunteers for a homelessness charity and is the vice chair of a housing Association.
See more by Rachel Snow-Miller