Aims The Trust's objectives include improving the patient experience – to support this a Patient Stories initiative has been implemented to facilitate staff from all disciplines and all levels to hear patient and carer stories and how we have made them feel.
Methods The focus is on patients with compromised communication needs and how this impacts on the quality of their experiences of healthcare. Consideration of their equality and diversity needs including the 9 key characteristics for equalities was explicit. Inclusion of the carer experience of communication and how they are made to feel was intrinsic to the wholeness of the project. The methodology was undertaken with carers of young people with learning disabilities and complex needs alongside the young person. Trust integrated governance data suggested that this group of patients tend to get a ‘raw deal.’ A participation appraisal methodology included story telling and filming the patients and carers telling their story of their experiences. The story is described using Experienced Based Design Methodology in the context of their journey through clinical services including positive and negative experiences, how we made them feel and how we can improve.
Results Carers are recognised as being experts in their experiences and this has led to them being involved in the design of training tools for staff regarding effective communication with patients with learning disabilities, and the need to balance their experiences with staff's clinical expertise.
The stories are used within patient experience training sessions to highlight the importance of the need for holistic care that benefits from conversations about the patient / carer “feelings”, balanced with the clinical care pathways.
The stories provided a framework of evidence to establish an accessible communications working group which is developing communication aids for patients / carers with sensory impairment, learning disability and low literacy levels.
Conclusion This project balances qualitative and quantitative data and methodologies for improving the patients experience and how services and communication can be improved. It isn't about reading data, statistics or complaint letters, it is about how healthcare providers can learn from viewing “real life” experiences, how we make patient/carers feel.