Adults with neuromuscular conditions and social care. Contemplating themes of despair, hope, and what 'changing the dial' might look like

Introduction
The current adult social care system was recently characterised by Baroness Casey as ‘something creaking, inconsistent and impenetrable’. Despite professionals, disabled adults and carers all experiencing these system characteristics, research rarely attempts to bring these voices together to consider ways in which the system could be redialled towards a different set of adjectives.

Methods
The presentation will report on developing findings and learning from a two-year (April 25 to March 27) NIHR Three Schools Prevention funded study titled ‘Enhancing social care for adults with neuromuscular conditions diagnosed in childhood as a preventative approach: A co-produced, Experience-Based Co-Design (EBCD) research study’. Data collection is ongoing; Phase One (narrative interviews) is due to be completed by Spring 26 with a series of co-design workshops scheduled to follow.

Findings
Developing thematic findings suggest a system that embodies the adjectives Baroness Casey uses to describe the current adult social care system. Across interviews with professionals, disabled adults and informal carers, we have heard about a system that rarely delivers to the principles of ‘choice and control’ professed in the 2014 Care Act. In line with EBCD stages, the project is due to move towards identifying priorities for change, bringing together those that participated in phase one via a series of online co-design workshops.

Discussion
This project seeks to ‘change the dial’ in relation to both how adult social care research occurs and the outputs it creates, fostering ways of working that reflect an equitable and collaborative ethos with equal partnership between user-led organisations, local authorities, and academic institutions.