• Led by the Royal Mencap Society.
  • Aiming to develop a better understanding of lived experience to identify what caring elements create the best possible quality of life for people with a learning disability.
  • Will use the Personal Outcome Scale, a way of measuring quality of life, to learn about the lived experiences of people with a learning disability.
  • Aiming to carry out around 5,000 interviews.

People with a learning disability often face worse health outcomes than people without a learning disability. Mencap research has found that around 1,200 people with a learning disability die avoidably every year. In addition, people with a learning disability have been disproportionately affected by COVID-19.

This project will develop analytics that place people with a learning disability at the centre of social care practice. These analytics can then be used to create social care that is tailored to an individual’s specific medical, social and emotional needs.

The project will use the Personal Outcome Scale (POS), a qualitative tool for measuring quality of life. The POS consists of a two-hour face-to-face conversation to gather responses to 48 questions about the person’s life. Around 5,000 people have been identified as potentially being able to take part in the interviews.

Data from the interviews will be collected via a mobile app, and software used to perform statistical testing and to build predictive models. The data gathered will enable the exploration of areas such as the level of impact staff training has on quality of life, whether local health outcomes correlate with POS scores, and whether there are any differences in the care setting to overall quality of life.

The question that is ultimately being asked is ‘what are the factors that can improve the quality of life for people with a learning disability?’.

Mencap will implement changes that come from the interviews with the people they support to improve care. They will also share their methodology and findings across the social care sector.


For more information about this project, please contact Tom Beider, Trusts and Statutory Fundraising Manager, Royal Mencap Society.

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