The East Midlands Children's Palliative Care Network links services working with children and young people with palliative care needs across the East Midlands. As a region the following are among our priorities and these were explored in workshops during the day.
- Hearing the young person's view about transition between services.
- Person centred pathways and resuscitation decisions.
- Implementation of the ACT Transition Care Pathway across the region.
- Making the links around connecting adult and children's services together to develop seamless services.
The outcomes from the day for delegates were:-
- Understand why the care of young people with palliative care needs is so important
- Understand the regional picture from a multi-agency perspective
- Hear and see examples of how local organisations are implementing developments in children's end of life care
- Hear from young people about their experiences and hopes around transition
- Network with others across the region and share ideas to enhance patient experience.
See below for the presentations from the day.
Programme for the day Click here
Main Stage Presentations
Keynote Presentation: Lucia Winters, Programme Coordinator for Transition Information Network Click here
End of Life Care Planning for Young People: Dr Toni Wolff, Community Paediatrician, Nottinghamshire Click here
Recognising the need to move on and making it work: Isabel Warren, Deputy Head of Care/Lead Nurse for Young People - Rainbows Children’s Hospice Click here
Growing older is mandatory, Growing up is optional - Managing the transition: Bernie Donaghy, Cystic Fibrosis Nurse Specialist at University Hospitals of Leicester NHS Trust Click here
Palliative Care for Young People - Local implementation, The ACT Pathway: Rebecca Riley, ACT Transition Coordinator for East Midlands and Zoe Wilkes, Chair of East Midlands Children’s and Young People’s Palliative Care Network Click here
Workshop Presentations
Workshop1: Working and Learning together: Phillippa Graham, Education Facilitator, LOROS and Jenna Hughes, Community Nurse & Training Lead for Diana Services, Leicester Childrens Community Health Services Click here
Workshop 2: End of Life Care Plans: Lynn DeMelo, Clinical Nurse Specialist for Palliative Care, Rainbows Children’s Hospice and Claire Robinson, Community Nurse- Diana Services (NB this presentation will be loaded soon)
Workshop 3: Sex.Drugs and Palliative Care: Isabel Warren, Deputy Head of Care, Rainbows Children's Hospice Click here
Workshop 4: Person Centered Planning: Rebecca Riley, ACT Transition Coordinator for East Midlands Click here
