1. Learning Disabilities Mortality Review (LeDeR) Programme1

2. Outcomes What LeDeR is What LeDeR is not Primary Care’s role in LeDeR
How to notify a death
How to participate in a LeDeR review
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) Exec summary in pack
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

3. Background Mencap (2007) ‘Death by Indifference’
Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) (2013)
Three times more likely to die from something that good care could have stopped
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) Exec summary in pack
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. 3

4. Background to the programme
Mazars Report –
An independent review of deaths of people with a Learning Disability or Mental Health problems in contact with Southern Health NHS Foundation Trust
(December 2015)

5. Background to the programme
Published by CQC in December 2016
CQC planning to add how Trusts review and investigate deaths into their inspection criteria during 2017

6. The LeDeR Programme aims
To drive improvement in the quality of health and social care service delivery for people with learning disabilities.
To help reduce premature mortality and health inequalities in this population.
To influence practice at service, individual practice and professional level.
Collate national level data
LeDeR is NOT an investigation, a complaints process or an avenue to apportion blame
To put people with learning disabilities and their families at the centre of the development and delivery of the work programme. Mazars report highlighted this again reinforcing the need to involve families and getting crucial information
To influence change in policy and service provision at national level with Government, NHS England, Public Health England and Local Government Association.
To support commissioning and service redesign by helping commissioners understand their opportunities to improve service delivery, reduce variation and learn from best practice.
To contribute to a move towards equality of treatment and parity of esteem for people with learning disabilities and help tackle the systemic contributors to the health and access inequalities they face. 6

7. Deaths to be included in the LeDeR process
All notified deaths of people with a learning disability aged from 4 and above.
All deaths of those aged 4-17 reviewed by local Child Death Overview Process. Reviewer liaises with team to offer learning disability expertise and ensure collection of core data for LeDeR Programme.
Deaths of people with LD aged 75 and over will not be subject to further review
beyond the collection of core data. Concerns raised through LAC and referred on to
Local Safeguarding Adults Board or the Coroner.
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.

8. How this fits with other reviews of deaths
LeDeR
Coroner
Police
SIRs
SARs
Police Investigations and Homicide reviews- need to be put on hold
Referral to the Coroner investigation :
Await outcome of the post-mortem
If proceeding to the Inquest suggest discuss with Coroner-
gathering different data and may well be able to feed into the process.
Safeguarding Investigations and SIR- broad range of data so need to discuss with
Leads the merit of running the process alongside

9. Local reviews of deaths
Purpose:
To help health and social care professionals and policy makers to:
Identify the potentially avoidable contributory factors related to deaths of people with learning disabilities.
Identify variation and best practice in preventing premature mortality of people with learning disabilities.
Develop action plans to make any necessary changes to health and social care service delivery for people with learning disabilities.
This is the difference with the CI – where the investigations took place by people
outside of local services and although some systemic changes were made it was
a national project.
It is hoped that the development of local actions plans will mean systemic changes
at a local and national level.
Eg: 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.

10. Potentially Avoidable Contributory Factors
Refers to any factor:
“that has been identified as contributing to a person’s death, and which, could have possibly been avoidable with the provision of good quality health or social care”.
Reviewers to allocate them into three categories relating to:
The person and /or their environment.
The person’s care and its provision.
The way services are organised and accessed.
Read out some of the examples from the CI
Person and Environment
Unsuitable placements, no account taken of communication needs and access needs so information not understood. CF Mr Johnson
Key information provided by families ignored, low expectations of families.
Care and Services
Lack of routine monitoring of persons health and specific risk factors 10

11. Priority themed reviews
Multi-agency reviews focus on:
Deaths of young people aged 18-24
Or people from Black and Minority Ethnic Communities.
Later years to be agreed through consultation and
by NHS England
Each death will be reviewed by a panel of expert- professionals
Family members and self advocates

12. Involving families in the review process
“Its very strange because after my son died I said ‘I wish I could tell somebody that I’m concerned about the fact that people don’t get monitored when they’ve had clots’ and then this cropped up and I just couldn’t believe it. It was such a good opportunity to talk to somebody, and to try and forward this idea.”
Father interviewed as part of CIPOLD
Is this happening locally? Duty to do so Sec 11 if the Health and Social Care Act
Briefing paper and standard templates
Encourage family involvement – be as flexible as possible but clear about
Why- Knowledge of the person who has died, who they were, their experiences
and circumstances leading up to their death.-
Work with the family at own pace where possible- information letter and
consent form
Discuss how they want to be involved and receive feedback
Need to be sensitive, empathetic and supportive, people may be distressed
and angry-
Take information about local sources of support, complaints, PALS etc
Think about how to involve them in the multi agency meetings- timings, place,
avoiding jargon, support in the meeting and feedback.
Families often have nothing but praise for those who were involved.

13. Notification Anyone can make a notification to LeDeR
This includes friends, family and professionals
LeDeR has a nationwide data sharing agreement under section 251 of the NHS Act 2006
Notifications can be completed online or via telephone  
Deaths of people with LD aged 75 and over will not be subject to further review
beyond the collection of core data. Concerns raised through LAC and referred on to
Local Safeguarding Adults Board or the Coroner.
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.

14. Initial Review Completion of initial review form
Talk to someone who knew the person well
Review one set of case notes
Complete timeline and pen portrait
Further action required?
Complete summary and action plan
LAC to review and close the case
LAC collates action plans for LSG
NB: Delays might occur if there is a post mortem as you will need to wait for the results. 14

15. Criteria for Priority Themed Reviews* Grading care: 5 &6* Red flags
Indicators for a multi agency review
Criteria for Priority Themed Reviews*
Grading care: 5 &6*
Red flags
Gut feeling
NB:
Why we do multi agency reviews:
Concerns
Build upon what we already know
Realize that further learning could be obtained from an in-depth analysis
Opportunity t o involve more people 15

16. The multi agency review meeting
Place to learn and not apportion blame
Discuss the content of the initial review
Identify good practice and/or areas which could be improved
Agree content of action plan
Discussion point:
Are you experienced at facilitating and chairing meetings?
Do you think these will be any different from any other meetings that you chair or attend
What do you think that you can do to help the meeting be successful.
Plan the meeting
Be clear about the purpose, aims and times
Try not to focus too much on the detail in the timeline and pen portrait – just agree
Focus upon discussing key points
Good practice
Surprise at death
Potentially avoidable contributory factors: person and environment, relation to care and services
Agree was the death on balance avoidable- give reasons
Lessons learned
Changes to local practices
Wider recommendations
Action plan 16

17. Early findings Nationally: 10 deaths related to untreated constipation
In Y&H:
Late 40s to early 60s
People living with multiple health conditions (epilepsy and/or dementia)
Most common cause of death: pneumonia
Support staff need training in end of life care
Family concerns regarding epilepsy care
Some excellent examples of person centred care and PHBs
Annual health checks
Use of DNACPR / IMCAs
Non-compliance / reasonable adjustments
Possibly raising more questions than answers at the moment. 17

18. Contact details Tom Raines
Learning Disability Project Manager – NHS England
Liam Dodds
Learning Disability Project Officer – NHS England