Together for Short Lives
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Programme

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

 

09.45

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.

10.15

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.

10.50

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.
Rami Okasha, Chief Executive, and Maria McGill, Former Chief Executive, Children’s Hospices Across Scotland (CHAS).

The Chameleon Project: a children’s end of life care quality improvement project.
Dr Toni Wolff, Consultant Paediatrician (Neurodisability), Nottingham Children’s Hospital.

11.30 Morning break

 

12.00

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.
Dr Lorna Fraser, Director of the Martin House Research Centre, NIHR Fellow and Senior Lecturer at the University of York.

A new economic model for 24-hour end of life care for children at home.
Professor Rhiannon Tudor Edwards, Professor of Health Economics and Co-Director of the Centre for Health Economics and Medicines evaluation (CHEME), Bangor University.

What the rising prevalence of life-limiting and life-threatening conditions in children means in practice.
Dr Lisa Kauffmann, Consultant Paediatrician and Clinical Director of Children’s Community Services, Central Manchester University Hospitals NHS Foundation Trust.

Increasing needs and the interaction between PICU and hospice.
Jan Sutherland-Oakes, Director of Clinical Services, Claire House Children’s Hospice.

13.10 Lunch

 

14.05

Parallel sessions

1A
End of Life Care for Children and Young People in Kent and Medway: Who is in Greatest Need?
Dr Melissa Mather, Public Health Medicine Registrar, London and South East Region.

Hand in Hand: An evaluation of joint transition clinics, co-facilitated by adult and paediatric palliative care clinicians in Hospice settings.
Hannah Williams, Improvement & Development Manager, Social Care Wales. Dr Megumi Baba, Consultant Paediatrician, Ty Hafan.

1B
Empowering nurses to lead sector wide change by recruiting, developing and retaining a resilient children’s palliative care nursing workforce which is responsive to patient need.
Katie Stevens, Project Manager, Children’s Hospices across London and Clinical Governance and Quality Lead Nurse, Demelza Hospice Care for Children.

Magnolia House. Improving palliative care in an acute children’s hospital.
Dr Karen Shaw, Research Psychologist, University of Birmingham.

1C
Piloting a managed clinical network approach: the opportunities and threats to achieving 24/7 children’s palliative care in Yorkshire and Humber.
Dr Michelle Hills, Consultant in Paediatric Palliative Medicine, Leeds Teaching Hospitals Trust and Martin House Hospice. Lead Clinician for the Yorkshire and Humber Children’s Palliative Care Network.

1D
Competence, Confidence and Courage: Increasing Clinical Skills in a Children’s Hospice.
Elli Rushton, Lead Practice Educator and Clinical Team Leader, and Chris Forster, Head of Naomi House and Children’s Services, Naomi House & Jacksplace.

Meeting the challenges of providing palliative care services to children requiring long term ventilation requires an innovative approach to developing a skilled workforce.
Anna Jones, Practice Development Nurse, Chestnut Tree House.

15.05 Break to change rooms

 

15.10

Parallel sessions

2A
Collaborative partnership between children and adult palliative care/hospice services; A new model of care providing a continuing and comprehensive service to young adults and their families with complex palliative care needs.
Louise Smith, Paediatric Palliative Care Specialist, Claire House and Dr Emma Longford, Palliative Care Consultant and Medical Director, Wirral St John’s Hospice.

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.
Dr Katherine Knighting, Senior Research Fellow and Senior Lecturer, Edge Hill University.

2B
Does early introduction of palliative care and advance care planning impact outcomes and experiences of families?
Dr Archana Soman, Consultant in Paediatric Palliative Care, Sheffield Children’s Hospital and Bluebell Wood Children’s Hospice.

Reframing the Approach to Advance Care Planning in Children’s Palliative Care.
Helen Bennett, Director of Care, Alexander Devine Children’s Hospice.

2C
Developing a Model of Care: An opportunity to define children’s hospice care in Ireland.
Dr Joanne Balfe, Consultant Paediatrician, LauraLynn, Ireland’s Children’s Hospice.

Development of an innovative new responsive model of care by a children’s hospice.
Jo Cohen, Head of Care – Business Management, Shooting Star Children’s Hospices.

2D
Children’s unmet palliative care needs: a scoping review of parents’ perspectives.
Georgina Constantinou, PhD Candidate, University of Bedfordshire.

The Children’s Palliative Outcome Scale (C-POS).
Lucy Coombes, Lead Nurse, Children and Young People’s Outreach and Symptom Care Team, The Royal Marsden NHS Foundation Trust.

16.10 Afternoon break

 

16.30

Hearing the voices of young people, and learning from new models of care in transition

This is me
Young people curating the ‘This is Me’ transition arts project will introduce some of the artworks submitted and then chair the rest of this session.

Transforming transition experiences of young people in Suffolk
Helen Finlinson, Young Adult Care and Transition Lead, St Elizabeth Hospice.

Pathways Clinic
Jasmine Heslop, Paediatric Liaison and Transition Nurse, Royal Devon and Exeter NHS Foundation Trust.

17.30

Closing remarks

Professor Sir Alan Craft, President of Together for Short Lives and Emeritus Professor of Child Health at Newcastle University.

17.40 Close

 

17.40

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

 

09.30

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.

09.50

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.

11.00 Morning break

 

11.30

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.

12.40 Lunch

 

13.40

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

 

14.15

Parallel sessions

3A
Mediating between parents and health professionals at the end of life.
Sarah Barclay, Founder and Director of The Medical Mediation Foundation.

3B
PICU and Paediatric Palliative Care Teams, working in partnership with families.
Dr Sadie Thomas-Unsworth, Principle Psychologist to the Paediatric Palliative Care & Bereavement Support Team, Bristol Royal Hospital for Children.

Research – The experiences of consultant paediatricians involved in end-of-life care for children with a palliative diagnosis.
Lisa Pullen, Clinical Manager Specialist Children’s Community Nursing Service, Torbay and South Devon Foundation Trust.

3C
Exploring fathers’ experiences of living with a child who has a life shortening condition. A phenomenological approach.
Nicky Bridges, Clinical Nurse Manager, Children’s Hospices Across Scotland.

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.
Stephanie Nimmo, writer, campaigner and bereaved mother of a child born with a life-limiting condition.

 

15.15 Afternoon break

 

15.45

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.

16.45

Closing remarks: A new vision for children’s palliative care

Andy Fletcher, Chief Executive Officer, Together for Short Lives.

17.00 Close

 

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.

Learning objectives

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.