1. The Learning Disabilities Mortality Review (LeDeR) programme
Robert Tunmore
Regional Coordinator
NHS South of England 1 1

2. What we will be covering in this presentation
Background
Review process
National findings to date
Questions & discussion
Mencap (2007) Death by Indifference’ told the stories of six people who died whilst in the case of the NHS. They used the term ‘institutional discrimination’ to describe the treatment that they received.
Michael (2008)‘Healthcare for All’ Commissioned by DH to explore the wider issue of access to healthcare for people with learning disabilities. Michael reported that he was shocked to discover that the experiences of the families described in Mencap’s report were by no means isolated and the report described some appalling examples of discrimination, abuse and neglect across the range of health services.
Parliamentary and Health Service Ombudsman (2009) ‘Six Lives’ report detailed the investigations into the complaints made by Mencap on behalf of the six families.
In one case the Ombudsman concluded that the death of the person concerned occurred as a consequence of the service failure and maladministration identified.
In one case it was concluded that it was likely the death of the person could have been avoided, had the care and treatment provided not fallen so far below the relevant standard.
In four of the six cases the complaint was upheld that the person concerned was treated less favourably in some aspects of their care and treatment for reasons related to their learning disabilities.
Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) (2013)
CIPOLD reported that for every one person in the general population who dies from a cause of death amenable to good quality care, three people with learning disabilities will do so. 2 2

3. Background 3 3

4. Learning From Deaths Programme 1st April 2017 Recommends:
Standardised approach
All deaths of people with learning disabilities within NHS care to be reviewed using LeDeR methodology
LEARNING FROM DEATHS PROGRAMME
National Guidance released March specifically states that all deaths from LD should follow LeDeR Methodology.
Reporting required via a quarterly report on all deaths in NHS Trust.
LeDeR is required as part of this process to send an anonymised copy of the report to the NHS Trust that the person died in.

5. LeDeR programme aims: Local reviews of deaths
To identify the potentially avoidable contributory factors related to deaths of people with learning disabilities.
To identify variation and best practice in preventing premature mortality of people with learning disabilities.
To develop action plans to make any necessary changes to health and social care service delivery for people with learning disabilities.
LOCAL REVIEWS
It is hoped that the development of local actions plans will mean systemic changes at a local level.
Individual changes as well as emerging themes and trends.
E.g.: Mr. C – mild learning disability and not known to services -delays for diagnostic tests due to not understanding the implications of the test and
preparations for the test. Multi agency review at GP practice – role for the community matron in supporting people to access appointments earlier.

6. To be included
All notified deaths of people with a learning disability aged over 4 years.
All deaths of those aged reviewed by local Child Death Overview Process. Reviewer liaises with team to offer learning disability expertise and ensure collection of core data for LeDeR
Children under 4 years will not be reviewed as it can be difficult to establish a learning disability prior to that age.
The programme used to have a ‘cut off’ age of 74 however this was waived to align with the ‘learning from deaths’ programme.
Deaths of children younger than 4 years of age will not be subject to review as part of the LeDeR Programme, but will be reviewed as part of the statutory Child Death Review Process.
All deaths of children and young people between the ages of 4-17 will be reviewed as part of the current statutory Child Death Review Process.
The LeDeR local reviewer will engage with this process to offer guidance about specific learning disability aspects of the case if required, and to collect the core data required for the LeDeR Programme.
The final report and any subsequent action plan from the Child Death Review Process, plus any additional core data required by the LeDeR Programme, will be uploaded by the Local Reviewer via the web portal to the Local Area Contact and the LeDeR Programme.
The programme will analyse data from reports on an annual basis to identify
common themes and recommendations.

7. NOTIFYING A DEATH
Example of a flyer or poster.
Can have more sent out via LeDeR if people want to request some.

8. LeDeR Process Notify Case assigned to Local Area Contact
Finished review to Local Area Contact
Multi Agency Review
Initial review
Case assigned to Reviewer
Case assigned to Local Area Contact
Notify
PROCESS OVERVIEW
Notification through Uni of Bristol, phone or website
Local Area Contact is selected via person’s GP postcode
LAC will select reviewer depending on skill and capacity (no more than 3-4 reviews a year ideally)
MAR not always needed, will look at that later on in more detail.
Finished review to LAC who will quality check and provide feedback if necessary.
After this- review and action plan (anonymised) will be sent through to Steering Group to monitor actions.

9. 21/11/2018

10. LeDeR Reviewer role To conduct an initial review of each death
To conduct a multiagency review of a death if appropriate
Write and submit completed documentation
Build and maintain relationships to ensure knowledge and information is shared
Involve family members of people with learning disabilities in the review as appropriate 10

11. National LeDeR findings so far
Males 57%; females 43% (n=1,311)
White ethnic background 93% (n=1,145)
Nature of Learning disability (n=828)
Mild: 27%
Moderate: 33%
Severe: 29%
Profound or multiple: 11%
N=100% of responses to question 12 12

12. National LeDeR findings so far
Usually lived alone 9% (n=1,158)
Had been in an out-of-area placement 9% (n=1,158)
Died in hospital 64%, compared with 47% in the general population (n=1,244).
N=100% of responses to question 13 13

13. National LeDeR Findings: age
Median age of death:
28% of deaths were of people aged 50 and under
(compared with 5% in the general population)
LeDeR
General population
Male 59 79
Female 56 83 14 14

14. National LeDeR Findings: Cause
Most common individual causes of death
Pneumonia 16%
Sepsis 11%
Aspiration pneumonia 9%
Most common underlying causes of death
Diseases of respiratory system: 31%
Diseases of circulatory system: 16%
Neoplasms (cancer): 10% 15 15

15. National LeDeR Findings: Learning
The most commonly reported learning and recommendations were made in relation to the need for:
Greater inter-agency collaboration, including communication
Greater awareness of the needs of people with learning disabilities
Greater understanding and application of the Mental Capacity Act (MCA) 16 16

16. Multi-agency discussion
From learning to action
Mortality Review
Multi-agency discussion
Aids understanding of depth of issue, and targets for action
Identifies area for attention
Develop & Implement
Intervention
Quality
Improvement
Cycle
Monitor impact
The learning from individual deaths should inform a timely local service improvement cycle, reduce health inequalities & premature mortality 17 17

17. Suggested targeted actions needed
Identify reasonable adjustments in Summary Care Record and regularly audit their provision.
Focus on preventative measures for pneumonia and sepsis in people with learning disabilities.
Strengthen inter-agency collaboration, information sharing, and effective communication.
Improve adherence to the Mental Capacity Act, and ensure providers of care understand its relevance to their own work setting.
Provide mandatory learning disability awareness training to all staff. 18 18

18. Questions / Discussion19

19. Contact details LeDeR Bristol: leder-team@bristol.ac.uk
Tel:
Website:
@LeDeR_Team 20