Over two packed days, we will share new approaches and solutions as we debate some of the key questions facing our sector:
- Who is eligible for children’s palliative care and how can we adapt to the growing number of children?
- Is the sector’s role about children’s palliative care or children with complex disabilities?
- How can we prepare for complex ethical challenges and support our workforce?
- What will children’s palliative care look like in 2030 and how do we prepare?
(RCPCH has approved this activity for CPD in accordance with the current RCPCH CPD Guidelines)
Day one, Wednesday 25 March 2020
Towards a New Vision for Children’s Palliative Care
Day one will focus on the changing children’s palliative care landscape, sharing the latest research on the number and needs of babies, children and young people with life-limiting and life-threatening conditions, exploring what this means for the sector.
We will examine how our world is changing and how we can adapt to caring for the increasing number of neonates and children with very complex needs. What does this mean for our workforce, clinical skills and services and what are the funding and commissioning implications?
We will explore ways that we can make our services more sustainable, sharing new models of care and practice, showcasing how individuals and services are adapting their practice and workforce to meet the changing needs of children and families.
|08.45||Registration and exhibition viewing
Opening remarks: A new vision for children’s palliative care
Conference Chair: Professor Sir Alan Craft, President of Together for Short Lives and Emeritus Professor of Child Health at Newcastle University.
Andy Fletcher, Chief Executive Officer, Together for Short Lives.
Balloon Debate: What is children’s palliative care and who is it for?
Dr Karen Horridge, Consultant Paediatrician (Disability), Sunderland Royal Hospital.
Dr Jonathan Downie, Consultant in Paediatric Palliative Medicine, Royal Hospital for Children, Glasgow.
Solutions from the frontline to the ‘dangerous cocktail’ of rising complexity and diminishing funding
Meeting the needs of the rising number of children across Scotland requiring palliative care.
The Chameleon Project: a children’s end of life care quality improvement project.
Growing numbers, changing needs: What this means in practice for our work across children’s palliative care
Make every child count. Launching the findings of new research into the prevalence of life-limiting and life-threatening conditions in children.
A new economic model for 24-hour end of life care for children at home.
What the rising prevalence of life-limiting and life-threatening conditions in children means in practice.
Increasing needs and the interaction between PICU and hospice.
Hand in Hand: An evaluation of joint transition clinics, co-facilitated by adult and paediatric palliative care clinicians in Hospice settings.
Magnolia House. Improving palliative care in an acute children’s hospital.
Meeting the challenges of providing palliative care services to children requiring long term ventilation requires an innovative approach to developing a skilled workforce.
|15.05||Break to change rooms
Where do I go now? A mixed-method systematic review into the availability, effectiveness, economics, experience, and policy context of respite care for young adults with complex healthcare needs.
Reframing the Approach to Advance Care Planning in Children’s Palliative Care.
Development of an innovative new responsive model of care by a children’s hospice.
The Children’s Palliative Outcome Scale (C-POS).
Hearing the voices of young people, and learning from new models of care in transition
This is me
Transforming transition experiences of young people in Suffolk
Professor Sir Alan Craft, President of Together for Short Lives and Emeritus Professor of Child Health at Newcastle University.
Networking reception and viewing of ‘This is me’ art exhibits
Day two, Thursday 26 March 2020
Children’s Palliative Care Under Fire
Children’s palliative care is under fire – the impact of high-profile ethical cases is far reaching – affecting families using our services, decision-makers, front line care teams, HR/legal departments and communications teams. We’ll work together on preparing for the coming storm, sharing clinical, legal and spiritual perspectives on these dilemmas, and hear from professionals working on the front-line.
We will explore the notion of “saving lives at all costs” and debate how we can prepare for crisis and respond to the impact of caring for more children with complex clinical needs. We’ll look at adapting our practice and skills to build resilience in our workforce, and examine the impact of ethical crisis on the mental health of our staff teams.
|09.00||Registration and exhibition viewing
Opening remarks: Children’s palliative care under fire
Conference chair: Dr Hilary Cass OBE, Retired Paediatrician; Honorary Consultant Evelina London Children’s Hospital, Chair of Together for Short Lives and British Academy Childhood Disability, and Past President of the RCPCH.
Big Debate: The changing ethical landscape
Steph Nimmo, Writer, campaigner and bereaved mother of a child born with a life-limiting condition.
Sarah Barclay, Founder and Director of The Medical Mediation Foundation.
Professor Richard Huxtable, Professor of Medical Ethics and Law, Centre for Ethics in Medicine at Bristol University.
Dr Chris Kidson, Consultant Paediatric Intensivist, NHS Greater Glasgow and Clyde.
Learning from crisis
Perspectives from children’s hospitals and paediatric palliative care professionals on managing complex and ethical challenges in children’s palliative care and the impact on practice, workforce, families, leadership and HR.
Dr Jo Laddie, Paediatric Palliative Medicine Consultant, Evelina London Children’s Hospital.
Dr Andrew Selby, Consultant in Paediatric Intensive Care and Long-Term Ventilation, Alder Hey Children’s NHS Foundation Trust.
Lesley Fellows, Nurse Consultant, Claire House Children’s Hospice.
Dr Sadie Thomas-Unsworth, Principle Psychologist to the Paediatric Palliative Care & Bereavement Support Team, Bristol Royal Hospital for Children.
Best interests decision-making in health care, ethics and law
Professor Richard Huxtable, Professor of Medical Ethics and Law and Director of the Centre for Ethics in Medicine, The University of Bristol Medical School.
|14.10||Break to change rooms
Research – The experiences of consultant paediatricians involved in end-of-life care for children with a palliative diagnosis.
Early referral to palliative care and brave and open conversations can help reduce conflict and improve collaboration when a child has a life-limiting condition.
Just because we can…?
As more technologies are used in medicine, more children are kept alive when their underlying condition cannot be cured. Decisions about whether to use or stop such treatments are always difficult. This session will explore the family, medical, ethical and legal aspects of these impossible decisions.
Dr Peter Wilson, Clinical Director, Southampton Children’s Hospital.
Dr Peta Coulson-Smith, Paediatric Registrar, Clinical Training Fellow and Senior Teaching Fellow in Medical Ethics and Law at the University of Southampton.
Dr Emma Nottingham, Senior Lecturer in Law and Co-director, Centre of Information Rights at the University of Winchester.
Closing remarks: A new vision for children’s palliative care
Andy Fletcher, Chief Executive Officer, Together for Short Lives.
Who should attend?
Time for change? A new vision for children’s palliative care is the 2020 “go to” event for:
- Neonatal and children’s palliative care professionals from all disciplines in the voluntary and statutory sectors.
- Chief executives, senior leaders, and leaders of care in voluntary sector children’s palliative care and hospice services.
- Practitioners delivering care and support to seriously ill babies, children and young people from all levels from the statutory and voluntary sector including leaders of care, nursing teams, doctors, social care professionals and therapists.
- Academics with an interest in child health or children’s palliative care.
- Day two, with a focus on ethical challenges and preparing for ethical crisis will also be of interest to workforce leaders, human resources and communications professionals.
By the end of day one, delegates will:
- Have an increased understanding of the changing role of children’s palliative care, who it is for and the debate around eligibility criteria for children’s palliative care services.
- Have up to date information about the rising prevalence of life-limiting and life-threatening conditions in children and understand some of the practical implications for children’s palliative care services in the future.
- Have insight into practical solutions that services can employ to meet the challenge of rising caseload of children with complex needs against the backdrop of diminishing and changing funding.
- Have greater insight into the challenges faced by young people with life-limiting conditions as they move between children’s and adult palliative care services, have knowledge of current service initiatives to improve young people’s experience of transition and gain insights that they can put into practice in their own service.
By the end of day two, delegates will:
- Have an understanding of how ethics in children’s palliative care have changed over time and insight into current and future ethical challenges and what they might mean for services.
- Have increased understanding of different perspectives (clinical, legal, family, mediation) on the ethical challenges in children’s palliative care and the impact these have.
- Have insight into how different services have been affected by high profile cases involving complex ethical challenges and decisions in children’s palliative care and what services can do to prepare for and manage the fallout of these cases across the organisation.
- Have practical advice for dealing with the family, medical, ethical and legal aspects of the decision-making process in discussions around continuing or discontinuing treatment when a child’s condition cannot be cured.