Programme

Where we have permission from speakers, talks will be recorded and a link shared to registered delegates following the conference.

09:20 - 09:25	Welcome and Housekeeping Dr Helen Leonard and Dr Florence Li, Academic Convenors, CoLab Partnership
09.25 - 09:30	Welcome from the Chair Dr Hilary Cass OBE, Chair CoLab Partnership
09:30 - 10:15	Introductory session What is genuine coproduction and why is it needed for children with medical complexity? Dr Mary Salama, Consultant Paediatrician and Medical lead for Children with Medical Complexities (CMiC), Birmingham Women’s and Children’s NHS Foundation Trust Gill Phillips, Creator of 'Whose Shoes', a highly regarded approach to coproduction. Director of Nutshell Communications This talk will show how the involvement, from the start, of patients and family carers is making a difference. Working with health care professionals as equals. Bring this alive with real stories - coproduction in action. People with lived experience are key to unblocking problems and creating solutions together.
10:15 - 11:20	Session Theme: Coproduction in designing care Making commissioning work for families Gabriella Walker, Independent Researcher, policy and personalisation for complex needs This talk will provide an overview of the commissioning system for children and how to influence it, as well as information on the policy context to lever more personalised care and support for families. Commissioning through coproduction - a success story David Johnston, parent carer A story about a family who have found a better way to care for their son. It’s not a blueprint for success but provides an insight into a new way of working for commissioners, health professionals and other stakeholders to consider in developing their own ideas and solutions to what are complex challenges in delivering complex care. NHSE Strategic Coproduction Group and involving people with Lived Experience in shaping the direction of national work that affects people with complex medical needs Colin Royle, Lived Experience Manager, NHS England & NHS Improvement This talk will discuss the Peer Leadership Development Programme and how we have embedded coproduction across all of our work.
11:20 - 11:35	Break
11:35 - 12:30	Keynote Lecture Reflections on the Emergence of Pediatric Complex Care Eyal Cohen, MD, MSc, FRCPC, Complex Care Program, The Hospital for Sick Children; Professor of Pediatrics and Health Policy, Management & Evaluation, University of Toronto This talk will have 3 main aims: 1) To describe the growth of populations of children, youth and adults with complex care needs; 2) To explore the challenges of care delivery aimed at this population from the perspectives of patients, their families, their clinicians and the health care system; and, 3) To discuss innovative tools and programmatic initiatives to better support children with medical complexity and their families.
12:30 - 13:15	Lunch Break
13:15 - 14:00	Panel discussion: Challenges and barriers in co-production
14:00 - 14:25	Session Theme: Experts by experience - educating professionals/parents Bridging the Gap: training for parents and professionals in effective communication and coproduction Rachel Wright Founder, Born at the Right Time The theory of putting families at the centre and being coproductive can roll off our tongue but what does it look like in real life? What small steps can professionals take to listen and work with families better? Using her lived experience of being both the parent of a child with complex needs and a healthcare professional, Rachel highlights the key role training has in inspiring and equipping cultural and procedural changes within the healthcare workforce.
14:25 - 14:40	Break
14:40 - 15:30	Session Theme: Experts by experience - educating professionals/parents (cont) Listening with both ears - dual partnerships between practitioners and parents Sibylle Erdmann, parent Collaborative partnering between parents of children with healthcare needs and healthcare teams can happen in two different ways: in the consulting or therapy room but also at a systemic, organisational level. Ei SMART is an organisation that supports therapist, clinician and family access to early intervention solutions for babies with developmental concerns. It is a multi-disciplinary, evidence-based approach to optimize cognitive, motor and relational development in high-risk infants. Promoting parental well-being and enabling relationship-based care are core principles of Ei SMART as we recognize the crucial role of parents for consistently effective early intervention. In this session, Sibylle Erdmann will draw on the work of the Ei SMART team, who have co-delivered study days, co-authored articles and also attended to getting to know each other as people with multiple identities who can ask each other challenging questions and listen with intent. Perinatal/neonatal perspective and provision of virtual training Alex Mancini, National Lead Nurse for Neonatal Palliative Care, National Neonatal Palliative Care Project, Chelsea & Westminster NHS Foundation Trust, CW+, The True Colours Trust
15:30 - 15:55	Session Theme: Research Involving ‘experts by experience’ in the research process in children's palliative care. What’s it like and why is it important? Dr Jo Taylor, Researcher and PPI Lead, Martin House Research Centre, University of York Patient and public involvement is an essential aspect of research that requires continuous investment. When done well, patient and public involvement has the potential to improve the quality and relevance of research.
15:55 - 16:05	Closing remarks Dr Hilary Cass OBE, Chair, CoLab Partnership