New research published in BJPsych Open has revealed substantial inconsistencies in service provision for people with epilepsy and learning disabilities across England. A study examining nine Integrated Care Systems (ICSs) in the Midlands found that many areas struggle to accurately identify the population with these needs, making effective service planning difficult. The report also highlighted challenges in recruiting and retaining staff with the specialised skills necessary to support these individuals.

One in five people with a learning disability also have epilepsy, a condition associated with a significantly higher risk of mortality. However, past studies have shown that these individuals often face fragmented care and poor risk management. The Step Together project was developed to address these gaps, providing a structured toolkit for assessing and enhancing care quality.

In this study, ICSs in the Midlands were invited to assess their services using the toolkit, which scores performance across areas like workforce, care planning, and information sharing. Results showed a regional average score of 44.2%, indicating room for improvement, with some systems scoring as low as 23.8%. Planning and care transition scored particularly low, reflecting challenges in supporting seamless care transitions from childhood to adulthood.

The authors note that the toolkit serves as a valuable catalyst for change by helping healthcare teams quickly identify areas for improvement and foster collaborative efforts across departments. While implementing such tools can be challenging in an already stretched healthcare system, the report underscores the urgent need for consistent, person-centred care to reduce avoidable hospital admissions and improve quality of life for those with epilepsy and learning disabilities.