DAPPLE (CPMS 56069, IRAS 328278)

UPDATED - 01/04/2026

About 1 million people in England have a learning disability. They experience stark health inequalities, dying on average 22 years earlier than the general population. They do not have equal access to palliative and end-of-life care services. Their palliative and end-of-life care needs are often unrecognized or not addressed, contributing to poorer, often avoidable outcomes.

This study is a work package of a wider project which aims to improve the quality and accessibility of palliative and end-of-life care for people with a learning disability. We will work with health and social care services in four localities in England to explore what works well and what prevents the delivery of high quality palliative and end-of-life care. Within these localities, we will identify up to 20 people with a learning disability with current palliative and end-of-life care need and up to 40 people with a learning disability who have died recently. We will interview patients/family/carer/staff, look at documents, and “hang out” with those with current palliative and end-of-life care need (ethnography). We will produce 12 exemplars as comprehensive case studies.

People with a learning disability, self-advocacy groups, family carers, policy makers and other stakeholders will work with the project team throughout. We will employ researchers with a learning disability as part of the core team. We will seek to ensure other disadvantaging factors are known and represented, especially ethnicity and rurality, as well as different levels of learning disability.

Outputs will be in suitable formats for different audiences, including easy-read materials and easy-to-understand videos. We will engage with specialist networks and produce blogs, webinars and social media activities. We will develop free Open Learn educational online materials for the public and professionals.

CASE STUDIES

Current: People with a learning disability with recognised PEOLC need or who may be in the last year of life

Participant inclusion criteria:  

• Adult (over 18) 

• Learning disability (mild to severe/profound)

Plus any one of the following: 

• Recognised PEOLC need (e.g. EOLC register, or receiving PEOLC service) 

• Advanced life limiting illness e.g. cancer, dementia 

• Negative answer from formal carers to Surprise Question (“Would you be surprised if they died within 12 months?”)

Retrospective: People with LD who have died in the past 12 months

Inclusion criteria: 

•Adult (18+ at time of death) 

•Learning disability 

•Died during 12 months before recruitment 

•Non-sudden death* 

Excluded: 

• Sudden (unexpected) death without recognized EOLC need

Study Resources

Access for the SystmOne and EMIS study resources can be requested below.

For further guidance on using the resources, please refer to the guidance documents and further useful information on the PRIDES page.

The searches have been created with the study specific inclusion and exclusion criteria. 

If you require any further information or help, please contact the IT Specialists:

EMIS: Jodie Button – jodie.button@nihr.ac.uk 

SystmOne:  VACANT

Disclaimer:

Please note the resources provided are designed to assist with the identification of potentially suitable patients and to appropriately code these patients if required.

These resources have been developed based on the criteria provided by the relevant study team and whilst every effort has been made to make them universally implementable they rely on read codes and the data stored in the individual practice's clinical system. These resources are intended to assist with identification but should be used in conjunction with clinical oversight and a clear understanding of the study parameters.

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