Presentation: Learning Disabilities Mortality Review (LeDeR) Programme

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National Context Learning Disabilities Mortality Review (LeDeR) Programme

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Key Programme aimsTo 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.

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Reviews of deaths All deaths of people with a learning disability aged between 4-74 years.

Deaths of children aged 4-17Reviewed by Child Death Overview Process. Local reviewer liaises with team to offer learning disability expertise if appropriate and ensure collection of core data for LeDeR Programme.

Deaths subject to Priority Themed ReviewA subset of anonymised reports of deaths to be reviewed externally. All will have been to multiagency review. In Year 1 this will be deaths of young people aged 18-24, or from Black and Minority Ethnic Communities.

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Process of local reviews of deaths

Local reviews of deathsPurpose:To help health and social care professionals and policy makers toIdentify 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.

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Programme developmentSecure web-based platform developed to handle notifications of deaths and the review processInformation governance: Section 251 approval received in June 2016New national Operational Steering Group establishedStaff changes leading to a restructuring of programme activitiesGovernance document to formalise structures

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Other pilot sites

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Family Carer Involvement

LeDeRs objective To put people with learning disabilities and their families at the centre of the development and delivery of the work programme.

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Liaison with other initiativesNational mortality case review programme (Royal College of Physicians). Developing a consistent standardised methodology for national mortality case record review

CQC review of how NHS trusts investigate and learn from deaths. Expert advisory group, at present developing processes.

Clinical Commissioning Group outcome indicators Likely to be adding another indicator relating to mortality of people with learning disabilities.

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Advice re getting ready for the reviewsEstablish a multiagency steering group to guide the work. Establish a lead(s) for the work in your area a. Possibly at the equivalent level of the Steering Groupb. For Local Area Contact rolesStart identifying potential local reviewers Review data sharing agreements. You may need to formalize a specific data sharing agreement for the mortality review programme that will support the initial and multiagency reviews of deaths.

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Communication with all stakeholders

Communication Plan NHS England & StakeholdersProducts/messages tailored to particular groups eg GPs, Coroners, family carersLocal, regional and national communications

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North East & Cumbria Learning Disability Network

Reducing Premature Mortality in People with Learning Disabilities messages from North East and Cumbria pilot

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Build the infrastructureNE&C Multi agency Steering Group:Provides leadershipBuilds trustCritical oversight and supportEmbed sustainabilityGovernance:Quality Surveillance GroupsSafeguarding Adults BoardsImplementation:Identify & train reviewersIdentify & train Local Area ContactsBuild peer support network

Challenges & Top 3 TipsCross boundary challenges: build on existing opportunities rather than developing new structuresCommunication strategy: clearly articulated communication plan needed at beginningEngagement of people with learning disabilities and families: include people at beginning & be clear about roles

www.england.nhs.ukIf I were starting again this is what I would do:

Set out very clearly and very early our plans for communicating this work, to who, when and how. Get support from comms teams with this. Talk to key people across health and social care about what they need the comms to do e.g. do they need information that will help them write the paper for the Exec team telling them this work is happening, do they need information that will help GPs and hospital doctors understand why we are undertaking this work and how, do they need information that helps them think about who should be trained as reviewers etc.

Family carer perspectives in a Steering Group provides a very different and extremely helpful lens on the work. Engage with Family Forums early dispel any myths about the work and seek their help in helping steering groups think about how learning from reviews has a potential huge impact on families for the future.

Engaging people with learning disabilities in this work continues to be extremely challenging for lots of reasons e.g. the subject matter, the complexity of what we are trying to achieve. However this is not a reason not to do it. Use regional forums to help think what are the best and most useful ways people with learning disabilities can be involved in this work.

Using existing processes has to be the solution going forward. The Steering Group plays a key role here. Make sure it has experts in a variety of fields so they can see quickly what already exists that perhaps needs a bit of adapting e.g. we are about to work with colleagues in the complaints team to pull out learning disability related complaints and extract learning. I wouldnt have thought of this but colleagues in steering group with responsibility for complaints quickly could see that this is an untapped resource.

Final comments and tips dont underestimate the time this takes. Weve been working tirelessly at this for nearly 2 years with still lots more to do. As we make progress now however Im certain that as reviews take place and learning comes from them this will create momentum and an eagerness to tackle inequalities to prevent premature mortality for people with learning disabilities.14

https://vimeo.com/185308170

Thank you