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?

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

Conference opening: A new vision for children’s palliative care

Conference Chair: Prof 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: Who is children’s palliative care here for?  All children with complex needs or those approaching end of life?

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.

Maria McGill, Chief Executive Officer, Children’s Hospices Across Scotland and Rami Okasha, Director of Transformation and Innovation, Children’s Hospices Across Scotland.

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

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

Prof Rhiannon Tudor Edwards, Professor of Health Economics and Co-Director of the Centre for Health Economics and Medicines evaluation (CHEME), Bangor University.

Dr Lisa Kauffmann, Consultant Paediatrician and Clinical Director of Children’s Community Services, Central Manchester University Hospitals NHS Foundation Trust.

Jan Sutherland-Oakes, Director of Clinical Services, Claire House Children’s Hospice.

Dr Hilary Cass OBE, Chair of Together for Short Lives and Honorary Consultant at Evelina London Children’s Hospital.

13.10 Lunch

 

14.05

Parallel sessions x 3

Workshop
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.

Conference papers on the theme of adapting to the changing world of children’s palliative care:

  • Adapting the workforce to the changing nature of children’s palliative care – what skills and support are needed?
  • Adapting models of care to manage increasing numbers of children with increasingly complex conditions
  • Reaching and educating generalists/intensivists
15.05 Move between rooms

 

15.10

Parallel sessions x 3

Workshop TBC

Conference papers on the theme of adapting to the changing world of children’s palliative care:

  • Adapting the workforce to the changing nature of children’s palliative care – what skills and support are needed?
  • Adapting models of care to manage increasing numbers of children with increasingly complex conditions
  • Reaching and educating generalists/intensivists
16.10 Afternoon break

 

16.30

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

Young people taking part in current transition projects and Helen Finlinson, Young Adult Care and Transition Lead, St Elizabeth Hospice.

17.30

Chair’s wrap-up and announcements

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

17.45 Close

 

18.00

Networking reception

 

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, Chair of Together for Short Lives and Honorary Consultant at Evelina London Children’s Hospital.

09.50

Big Debate: Should we be saving young life at all costs?

Dr Hilary Cass OBE, Chair of Together for Short Lives and Honorary Consultant at Evelina London Children’s Hospital.

Steph Nimmo, Writer, campaigner and parent.

Sarah Barclay, Founder and Director of The Medical Mediation Foundation.

Prof 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.

10.50 Morning break

 

11.20

Planning for crisis: Dealing with the impact of complex care decisions and the fallout on families, care teams, communications teams, human resources and leadership.

Speakers TBA

12.15 Move between rooms

 

12.20

Parallel sessions x 3

Workshop
Managing conflict in NICU & PICU

Conference papers on the theme of responding to ethical challenges

  • Building resilience and supporting staff – how we adapt to manage complex cases and ethical dilemmas
  • Supporting the mental health and wellbeing of professionals, parents/carers and children/young people involved in complex decision-making and conflict
  • Sharing practical learning from complex ethical cases.
13.20 Lunch

 

14.20

Parallel sessions x 3

Workshop
Developing a handbook to help professionals manage conflicts around treatment and care – a new practical guide to ethics and crisis communications in the children’s palliative care sector.

Conference papers on the theme of responding to ethical challenges

  • Building resilience and supporting staff – how we adapt to manage complex cases and ethical dilemmas
  • Supporting the mental health and wellbeing of professionals, parents/carers and children/young people involved in complex decision-making and conflict
  • Sharing practical learning from complex ethical cases.
15.15 Move between rooms

 

15.25

Ethics in the round

Dr Peter Wilson, Clinical Director, Southampton Children’s Hospital.

Dr Peta Coulson-Smith, Paediatric Registrar, and 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.

Parent speaker TBA

16.25

Closing words: A new vision for children’s palliative

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

16.40 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.