Research and analysis

Executive summary

Published 7 October 2024

This report provides findings from a mixed-method (quantitative and qualitative) research study with people with disabilities and fluctuating health conditions conducted across the UK from mid-January to late April 2023. This research included a survey of 297 people, a 4-week diary study with 46 participants and in-depth interviews with 49 participants.

The Department for Work and Pensions (DWP) wanted to develop an improved evidence base and understanding of applicant experiences of fluctuating conditions. This research set out to understand the best way, within the DWP process disability application and assessment, to capture the impact of conditions which fluctuate.

Participants in this study had a broad range of fluctuating underlying conditions that disabled them in differing ways and to differing degrees of severity and frequency. The underlying conditions and timing of initial onset also varied. Many had multiple co-occurring conditions.

The research highlighted the complexity of living with conditions that fluctuate over time and the impact this has on an individual’s life. Respondents emphasised the difficulty in describing fluctuations - their physical, emotional, and cognitive outcomes, and impacts of these on daily life - to third parties such as the DWP.

Through research insights we identified an ongoing cycle of fluctuation with 5constituent elements. This framework for understanding fluctuation may be helpful in staging conversations with benefit applicants to support a better understanding of the nature and impacts of life with a fluctuating condition.

Those 5 elements were:

1. Underlying condition(s): the foundation that causes differing degrees of predictability and manageability of a condition.

2. Trigger: A trigger can bring on, worsen, or change a condition at a certain point in time.

3. Manage: Actions that are taken to both prevent fluctuations or flare ups and/or reduce outcomes.

4. Outcome: The level and duration of a variance in physical, cognitive, and emotional ability.

5. Impacts: How the variance in physical, cognitive, and emotional ability influence an individual’s current and future ability to undertake daily living tasks and responsibilities such as work commitments or social activities.

Through the research we identified 4 potential areas in which the application and assessment process for disability benefits could be strengthened.

These included:

1. Improving the questions asked of applicants within the application and assessment process accounting for variability, triggers and actions taken to manage conditions.

2. Providing greater flexibility in the application and assessment process including the timing and format for applicants to provide evidence of the impact of their conditions.

3. Ensuring health disability assessors receive training on predictability, manageability, and varying fluctuation cycles experienced by many applicants.

4. Providing support and guidance to help claimants describe the impact of fluctuating conditions through the process.

Participants involved in the qualitative research also provided feedback on 3 potential initiatives designed to improve the disability application and assessment process: a health impact record, direct supply of medical evidence by a GP or the NHS, and involvement of specific assessors trained to better match an applicant’s main health condition. These ideas were largely viewed positively, but each came with administration provisos.