Frequently asked questions
General programme questions
What is the Learning Disability Mortality Review (LeDeR) Programme?
The overall aim of the LeDeR programme is to drive improvement in the quality of health and social care services delivery and to help reduce premature mortality and health inequalities.
The LeDeR programme has been established to support local areas to review deaths of people with learning disabilities, and to use the lessons learned to make improvements to service provision.
More information about the programme and the review process can be found on our web pages here: http://www.bristol.ac.uk/sps/leder/about/
What are the additional projects included in the LeDeR programme?
As well as supporting reviews of deaths of people with learning disabilities, the LeDeR programme involves a number of additional projects:
- Utilise existing national data about the mortality of people with learning disabilities
- Map the provision of reasonable adjustments for people with learning disabilities across England
- Improve death certification in relation to people with learning disabilities
- Establish a repository relating to people with learning disabilities e.g. serious case reviews, Ombudsman reports
You can find out more about these additional projects here: http://www.bristol.ac.uk/sps/leder/about/additional-projects/
Whose deaths should be notified to the LeDeR team?
All deaths of people with learning disabilities should be notified to the LeDeR team. This is in order to ascertain the numbers of people with learning disabilities who die each year, and their characteristics. The notification form can be found at https://www.bris.ac.uk/sps/leder/notification-system/
Whose deaths will be reviewed?
All deaths of people with learning disabilities aged 4 years and over will be reviewed, regardless of whether the death was expected or not, the cause of death or the place of death. Before the age of 4 years it is often difficult to assess whether a child has learning disabilities or not.
The LeDeR programme is using the definition of learning disabilities provided in the 2001 White Paper "Valuing People". For more information see the briefing paper here: Briefing paper 1 - What do we mean by learning disabilities (PDF, 607kB)
How can I notify the LeDeR programme of a death?
Anyone can notify us of a death via the online notification form https://www.bris.ac.uk/sps/leder/notification-system/ or via the programme telephone number 03007774774 from 9am – 4.30pm.
When is the LeDeR programme coming to my area?
The programme of reviews is being extended across all of England during 2017. See the national roll out progress at http://www.bristol.ac.uk/sps/leder/about/roll-out-progress/
What is the process of reviewing deaths?
All deaths of people aged 4years and over will receive an initial review. If any concerns are identified about the death, or it is felt that further learning could come from a fuller review of the death, a detailed, multiagency review will be held. Some deaths will be subject to ‘priority themed review’ and will automatically have a detailed multiagency review. The current priority themes are the deaths of young people aged 18-24 years, and people from Black and Minority Ethnic communities.
What is the purpose of a review?
The purpose of reviewing deaths is to identify if there are any potentially avoidable contributory factors associated with the deaths of people with learning disabilities. As part of each review, an action plan will be developed to take forward any improvements to the way that services are provided, if necessary, so that people with learning disabilities will live longer and healthier lives.
What factors mean an initial review should progress into a multi-agency review?
There are a number of circumstances that would indicate that a multiagency review is indicated. These may be identified very early in on the initial review process or may emerge as the review progresses.
A multiagency review is always required:
- If the person fits the criteria for a current themed priority review, that is from a Black and Ethnic Minority background or is aged 18-24;
- Where the assessment of the care received by the person is graded 5 or above.
A multiagency review should be considered:
- When any ‘red flag alerts’ are indicated in the initial review.
- If the local reviewer thinks that a multiagency review would be appropriate, even though their initial assessment does not include any ‘red flag’ responses. Remember the purpose of the multi- agency review is to gain further learning which will contribute to improving practice or service delivery.
If there is any doubt whether a multiagency review is indicated, the reviewer should discuss the circumstances with their Local Area Contact, a member of the LeDeR Programme team, or another senior level practitioner.
How are family members involved in reviews?
The LeDeR programme encourages reviewers to involve families throughout each stage of the review process or as much as families want to be involved. Family members will often have the greatest knowledge of the person who has died and may have thoughts already about how services could be improved based upon their own experiences. As part of the initial review process reviewers are advised to contact a family member or someone who knew the person well. If the review progresses to a multi-agency review, reviewers are advised to invite a family member or someone who knew the person well to attend or contribute to the multi-agency review meeting.
For more information see Briefing paper 11 How reviewers will work with you after the death of your relat (PDF, 491kB)
Process related questions
What are the governance arrangements for the programme?
A framework has been developed that outlines the governance processes and approaches required to enable the delivery of the LeDeR programme within each local area. You can find a copy of the framework here LEDER governance paper (PDF, 543kB)
The governance framework should be read in conjunction with the associated guidance documents detailing the methodology and approach of the programme.
What are the roles and responsibilities of the Steering Group?
The footprint for the programme is the NHS England regional structure. NHS England has four regions, each with a number of sub-regions. It is expected that each of the sub-regions will establish at least one local Steering Group which will be responsible for the implementation of the LeDeR Programme in that area.
The role of the area Steering Group is to:
- Guide the implementation of the programme of local reviews of deaths.
- Nominate at least one member to be the Local Area Contact for the programme.
- Receive regular updates from the Local Area Contact about the local reviews of deaths of people with learning disabilities.
- Monitor action plans resulting from local reviews of deaths.
- Take appropriate action as a result of information obtained from local reviews of deaths.
What is the role and responsibilities of the Local Area Contact?
Local Area Contacts are the link between the LeDeR Programme team, the local Steering Group and local reviewers. Their role is to work in partnership with the LeDeR team in organising the delivery of staff training.
- Receive notifications of deaths.
- Help allocate cases to local reviewers.
- Monitor the progress and completion of reviews to ensure that they are of a consistent standard and completed in a timely and comprehensive way.
- Provide advice and support for local reviewers as necessary.
- Liaise with the Local Steering Group about any issues as appropriate.
- Receive and sign off completed review documents and action plans.
- Anonymise and collate learning points and actions and present the information to the area Steering Group for action and implementation.
- Work with the Local Steering Group to take appropriate action
How can I become a reviewer?
There are a number of key skills that reviewers will need to have to undertake the role. These are outlined in our role description Role description for Local Reviewer (PDF, 108kB)
Please contact us to find out when training is taking place and who the local contact is for your area: email@example.com
How can I get in touch with other reviewers in my area?
Your Local Area Contact will hold details of all reviewers in your area and is best placed to put you in touch with other local reviewers. If you are unsure who your local area contact is please contact us: firstname.lastname@example.org
What support is available for reviewers?
The LeDeR programme provides support in terms of IT access, factsheets and briefing papers such as Information sharing.
Local support will be coordinated and offered by your Local Area Contact and may include buddying support or peer review.
Why is it important that reviewers are independent?
It is important that reviewers do not review the deaths of people with learning disabilities that they themselves have supported. This is so that they do not make any assumptions about the care provided and can be objective in assessing the circumstances leading to their death.
How many deaths will the LeDeR programme review each year?
We anticipate that there are approximately 3,000 deaths of people with learning disabilities in England each year.
How will the death of a person in an Out of Area Placement be reviewed?
As a rule, the area in which the person is registered with a GP will take the lead in reviewing the death.
However, there may be occasions when this is not appropriate e.g. if the person has only very recently moved and registered with a new GP. In such cases, consideration will be given as to who would be best placed to lead the review.
What if the person who died was not registered with a GP?
The death would still be notified to the LeDeR programme and discussions with the Local Area Contact would lead to decision on a case by case basis about how to proceed with a review.
How can I be kept informed about the LeDeR programme?
If you wish to be kept informed please email us at email@example.com
Are there any materials I can use to inform people in my area about the programme?
You can find some general information in About the Programme section on our website. There are also a number of resources available to you, such as programme leaflets, information sheets, a copy of a standard presentation, information for reviewers and other useful documents. These can be found in Resources section.
Information about how to report a death can be found in Notify a Death section.
If you need anything else that you cannot find please don't hesitate to contact us.
How does the LeDeR programme fit with existing local and national reviews of death?
There are a number of different review processes (e.g. child death review, safeguarding adults review, review of deaths of people in hospitals) that might be required for any one death. Reviews should be conducted in a cooperative manner, without unnecessary duplication.
For more information see briefing paper: Briefing paper 5 - Working with other investigation and review processes (PDF, 666kB)
Can I compare the number of potentially avoidable deaths identified by LeDeR with those in the general population?
There are a number of good reasons why it would not be appropriate to compare the number of potentially avoidable deaths using case record/case note review, and the number using LeDeR methodology. See Briefing paper 14: Comparison across potentially avoidable deaths.
Will families automatically be informed of the review process even if they have not had involvement with the person?
Not necessarily- it will be up to the reviewer to make the decision based upon the information that they are gathering during the initial review. However, we would expect families to be informed about the review process, and ask reviewers to bear in mind how the family might feel if they are not told.
Why do reviewers only look at one set of notes, and why do they choose them?
Reviewers are asked as part of the initial review process to review at least one set of relevant case notes and speak to at least one person who knew the person who has died well. It is hoped that this will enable them to make a decision as to whether additional learning can come from a fuller multiagency review.
Reviewers will be making their own decision about which is the most relevant set of notes to review, based upon the information received at the notification stage, but they are free to review additional notes and speak to other people as necessary.
What happens if the person who has died has indicated that they don't want their family involved in their care?
Reviewers should try to explore the context of why and when the person who has died indicated this and make a decision based upon the information they receive. If for example, there have been ongoing safeguarding issues with the family- it may not be appropriate to include them in the review process.
If on the other hand the comment was made and recorded some years ago and the family have been involved with the person more recently, the reviewer may feel justified in putting this aside in order to gain additional learning.
What is the purpose of writing a pen portrait?
A pen portrait is a summary of the person themselves, including their likes and dislikes, their health and care needs and their service contact. The purpose of the pen portraitis to present a clear picture of the person, their health and their needs, and the extent to which those needs have been met by health or other services.
What does legislation and guidance say about reviewers talking with families?
Section 11 of the Health and Social Care Act 2001 places a duty on NHS organisations to make arrangements to involve and consult patients and the public in:
- Planning services that they are responsible for
- Developing and considering proposals for changes in the way those services are provided
- Decisions to be made that affect how those services operate.
Therefore, at national, regional, commissioning and service provider level, service users and carers should be actively involved in planning, delivering and evaluating service provision. ?The overall aim of Section 11 was to increase patient-centred care and improve the experiences of service users and carers by ensuring they are involved at the beginning of any process to develop or change services.
NHS England’s ‘Commitment to Carers’ (published May 2014 and End of Year Progress Summary 2014/15, August 2015) notes that ‘Ultimately, we want to improve the quality of life for carers and the people for whom they care by supporting what carers have told us is important to them’ (p.5).
It also states the commitment to ‘gather bereaved carers views on the quality of care in the last three months of life in order to address gaps in evidence’ (Commitment 30).
What will happen to the information collected from the mortality reviews?
The University of Bristol will collate and analyse summaries of the reviews to create a national, and regional, picture of issues that have arisen. This anonymised information will provide an overview of potentially avoidable contributory factors associated with deaths, will outline good practice in preventing early deaths, and will enable local areas to compare their experiences with other areas. Such national data collection will also enable improvements in service provision to be monitored over time and the resulting impact on mortality of people with learning disabilities.
How are resulting action plans implemented and monitored?
Each initial and multiagency review will result in an action plan being developed. The action plan will identify any local actions that are recommended as a result of the learning that has come from the review. Local Area Contacts will collate and report action plans to the area Steering Groups, which are responsible for overseeing action plans and ensuring that relevant actions are followed through. The LeDeR programme will evaluate the completion of action plans through its quality assurance function.