Improving Experiences for Children with Complex Medical Needs in Hospital

ABSTRACT

Aims Attendance to hospital for children and young people with complex medical needs and autism can be frightening and stressful, due the unfamiliar setting and unknown people, communication difficulties and sensory overload. Currently at our Trust, there are no specific resources for this patient group, and we have received informal and formal feedback that the needs of these young people and their families are not being met. We aim to improve the experiences of children and young people with complex medical needs and autism at our Trust by creating a new patient pathway, involving children and families early to drive change. Methods We designed a focus group for parents of children with complex medical needs and autism. We identified families from the neurology clinic, and wrote to them to explain the project and our aims and to invite them to take part in the focus group. We followed this up with a phone call to discuss the project further and to answer their questions. The focus group took place in September 2021. Results Five parents and one grandparent attended the focus group. Between them, they had experience of emergency hospital attendances, inpatient admissions, outpatient appointments, paediatric intensive care, multiple investigations and care across multiple sites in the UK and abroad. Their children attended both mainstream and special schools. There was a wide range of complexity of need, and input from health, school, therapies and social care. The range of experience made for a highly insightful and interesting discussion. Positive feedback was received for the neurology consultant, epilepsy clinical nurse specialist, play specialists and hospital school team, with a particular focus on parents knowing who to contact when they needed advice and support. Key areas for change identified included more privacy for adolescents, a leaflet detailing what to expect during an admission, sensory toys, a patient passport and iPads for the emergency department. Families also commented that specific changes could be made to improve their children's experiences of outpatient clinics, including minimising the wait to be seen, considering whether the child needs to be brought to a face-to-face appointment, the presence of a sensory room and improvements to the phlebotomy room, including the presence of play specialists. They also identified opportunities to join up care between secondary and tertiary services, for example arranging for pre-admission COVID-19 swabs at the local hospital, rather than at the tertiary hospital where the admission was planned. The next phase will be to apply for funding to achieve these aims. We are devising a Makaton passport and a system to help children to communicate using symbols. We will involve the children, young people and families at every stage of our project. Conclusion Patients and families have a much greater insight into the challenges faced than professionals, and their input is the most valuable tool to drive change. Relationships between patients and professionals have a huge impact on experience of care. We will continue to work with families in order to bring about meaningful and impactful change.