Evidencing the challenges of care delivery for people with intellectual disability and epilepsy in England by using the Step Together toolkit
2024

Challenges in Care for People with Intellectual Disability and Epilepsy

Sample size: 9 publication 10 minutes Evidence: moderate

Author Information

Author(s): Shillito Tom, Watkins Lance, Ali Hafsha, Page Georgia, Pullen Angie, Mitchell Sarah, Roy Ashok, Sen Arjune, Kinney Michael, Thomas Rhys, Tittensor Phil, Bagary Manny, Subramanium Arun, Kent Bridie, Shankar Rohit

Primary Institution: Epilepsy Action, UK

Hypothesis

How can the Step Together toolkit improve care delivery for adults with intellectual disability and epilepsy in England?

Conclusion

The study found significant variability in service provision for people with intellectual disability and epilepsy across the nine integrated care systems in the Midlands.

Supporting Evidence

  • The toolkit was completed fully by nine of the 11 integrated care systems.
  • The overall score for service provision was 44.2%, indicating room for improvement.
  • Local planning and care planning scored the lowest among the eight domains assessed.
  • User/carer participation showed the widest variation across integrated care systems.
  • Significant gaps in service provision were identified, highlighting the need for improvement.

Takeaway

This study shows that people with intellectual disabilities and epilepsy are not getting the same level of care everywhere, and we need to improve how we help them.

Methodology

The Step Together toolkit was used by 11 integrated care systems in the Midlands to benchmark care provision for adults with intellectual disability and epilepsy.

Potential Biases

There is a risk of inaccurate responses being input to make services appear better or worse than they are.

Limitations

The study did not report on human participants directly, and the accuracy of responses may vary based on self-assessment.

Participant Demographics

The study focused on adults with intellectual disabilities and epilepsy in the Midlands region of England, covering a population of approximately 11 million.

Statistical Information

P-Value

0.05

Statistical Significance

p<0.05

Digital Object Identifier (DOI)

10.1192/bjo.2024.749

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