A case study approach was used that included data collection from a wide range of sources, e.g., a stakeholder conference, audit, questionnaires, and evaluative feedback from carers, families, staff, and Autism Champions. Integrated pathways for patient care improvement were developed. Families and carers were involved in raising awareness of the needs of children with autism and policy development to meet these needs. Increased involvement from interdisciplinary working strengthened the work of the Recognising Autism Management Programme (RAMP) and improved patient care outcomes. The interventions undertaken by the RAMP resulted in improved patient /carer satisfaction, the reduction of challenging behaviour, complaints, and treatment refusal. The Autism Champions played a significant role in signposting resources and the cascading of education and practice development. All children and young people (0-25 years) on the Autism Spectrum and their families benefit from safe, individualised, high quality care in a supportive environment. Education of staff and families and targeted actions in adapting attitudes and behaviours in communication and care management will result in positive experiences for staff, children and families and financial benefit to the NHS Trust by reducing cancellation of appointments and operating theatre slots.
ARTICLE HISTORY
This article demonstrates how a strategy to improve patient safety and the patient experience in hospital health care was implemented in a large tertiary children's hospital. A children and young people's therapeutic safe holding policy and training programme for all clinical nursing staff was developed and introduced. The strategy aimed to define best practice and equip healthcare professionals with the appropriate tools to deliver care safely, effectively and in the best interests of the child or young person.
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.
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