Contemporary Issues Surrounding Death and Grieving

James Norris - Founder : Digital Legacy Association & My Wishes.

James Norris is the founder of the Digital Legacy Association and MyWishes. James researches and develops end of life technologies, apps and websites. He organises the annual Digital Legacy Conference and publishes regular tutorials helping to empower both professionals and the general public. James runs educational workshops, has consulted various governments and provides thought leadership in digital death, bereavement, technology and the internet.

Dr Jo Wilson BSc (Hons), RGN, DipHSM, BA (Hons), PhD.

Jo is a registered nurse (adult) and team leader of family and bereavement support at Helen and Douglas House (children’s hospice). She is a facilitator of advanced communication skills training and a qualified coach. Prior to her appointment to this role she was Nurse Consultant at the Royal Free Hospitals London NHS Foundation Trust and led three palliative care teams (two hospital teams, and one community), led advance care planning across the trust, and additionally set up and clinically supervised a bereavement service supporting families during and after the COVID-19 pandemic. Her PhD focused on how senior health care professionals recognise dying and negotiate decision-making with patients and their families. She has co-led writing national guidance on care after death and Registered Nurse Verification of Expected Adult Death.

Dr Emily Harrop MBBS BSc DCH FRCPCH PhD Dip Pal Med

Emily has been a Consultant in Paediatric Palliative Care at Helen & Douglas House Hospices since 2010, and the Medical Director since 2019. She is also an Honorary Consultant at Oxford University Hospitals NHS Trust. She is active in research in the field of pain & symptom management and mentors postgraduate research students in the field of palliative medicine. Emily undertook her specialist palliative care training at Great Ormond Street Hospital (including a post graduate diploma in Palliative Medicine); before this she completed a PhD in Neuroscience (Infant Pain) as well as some postgraduate training in Paediatric Clinical Pharmacology. Her other roles include Research Lead of the Association of Paediatric Palliative Medicine (APPM) and joint Chair of the Thames Valley Paediatric Palliative Care Network (TVPCN). Emily has acted as the Co-chair of the WHO Guidelines on the management of chronic pain in children (2020) and the Deputy Chair of the NICE Clinical Guideline Development Group for End-of-Life care in Babies, Children & Young People (NG61). She is currently co-Clinical Lead for CYP Palliative and End of Life Care in NHS South East England.

Emma Jordan – Youth and Transition Worker - Helen & Douglas House Hospice

Emma is a fully qualified and experienced Youth Worker. She has been instrumental in developing and implementing the provision of youth and transition support at Helen and Douglas House and has worked for the organisation caring for young people since 2006. She has been the Youth and Transition Worker for approximately five years.
Emma has worked in various settings throughout her career supporting young people from all backgrounds: residential schools, medical units, residential trips, sailing adventures, youth groups, hospices, and youth clubs.
Emma’s experience and wealth of knowledge gained from working with children and young adults with life-limiting conditions, has informed the nature of the support provided to the young people in her current role. Her other responsibilities include advocating for the young people she supports, being a qualified Young Person Mental Health first aider and being an ‘all-round wellbeing guru’!
Emma is passionate about normalising disability and enabling young people to see beyond societal barriers to achieve the best they can. Her dissertation focused on one important aspect of this: Sexuality and Disability, which is an overlooked area of need. Many young people who have discussed their own experiences over the years voiced that there is still an overwhelming negative societal attitude towards this, and that it needs to be addressed and normalised. Emma has raised the profile of this topic at Helen and Douglas House and has provided training, updated Sexuality Policies, and implemented Care Plans to highlight the importance of this subject.

Rosa Mowles-Van der Gaag – Sibling Team Leader - Helen & Douglas House Hospice

Rosa has been one of the Sibling Team leaders at Helen and Douglas House Children’s hospice since 2017 and works with groups and with children and young people on a one-to-one basis. She has extensive experience of supporting children and families who have experienced the loss of a sibling or have a terminally ill child. Using evidence-based therapeutic approaches she helps them navigate the complex emotions and challenges that arise in the aftermath of a sibling's death, new diagnosis or life changing event. She focuses on rebuilding family relationships following loss and works with children to process their grief and find generative ways to cope. She has undertaken Media work in her field. Rosa runs experiential seminars to develop staff competencies in working imaginatively with distressed families and children. Rosa has an MA in Educational Psychology and wrote her dissertation on the evaluation of patient services. She also has a Diploma in Family Therapy. Previously she worked on an inpatient CAHMs unit at the Warneford hospital experiencing a range of mental health problems including eating disorders and has extensive experience of working with young people.

Lis Whybrow, Life Coach & National Bereavement Service

Lis is a Life Coach focussing on End-of-Life Grief and Bereavement coaching which really means all things life, death and all the messy bits in between.
She also works with the National Bereavement Service which aims to help people who have been bereaved to navigate their bereavement with practical, legal and emotional support
Previously an experienced solicitor, she has devised and taught practical courses and acted as external examiner on the Legal Practice Course at the University of Law and Liverpool John Moore's University, trained prospective solicitors, and taught on postgraduate and undergraduate programmes at Birmingham City University.
Lis contributed to The Bereavement Standard for Professionals working party, a group established to address the inconsistent approach of asset holders to the post death process, to explore ways in which various institutions can improve the user experience.
She is a Director of BrumYODO (You Only Die Once), a CIC encouraging and facilitating discussions about death and dying, with a particular interest in raising public awareness for the need to make wills and LPAs using professionally qualified and experienced advisors.
She also regularly engages in training for carers, social and palliative care teams and local authorities in the importance of professionally prepared wills and LPAs and generally preparing for a good death

Dr Elizabeth Rapa – Senior Post-Doctoral Researcher, Dept Psychiatry, University of Oxford & Louise Dalton – Consultant Clinical Psychologist, Dept Psychiatry, University of Oxford

Dr Louise Dalton and Dr Elizabeth Rapa are part of the Child and Adolescent Psychiatry group under the leadership of Professor Alan Stein in the department of Psychiatry at University of Oxford. Louise is a consultant clinical psychologist with over 20 years NHS experience and Elizabeth is a senior postdoctoral researcher. Their main area of research focusses on the way children are told about their own or a loved one’s serious illness or death. The team have developed a platform of resources to facilitate healthcare workers talking to their adult patients about the importance of telling children the diagnosis, as well as guides to help caregivers then have these sensitive conversations. Most recently they have been exploring how UK Bangladeshi and Pakistani communities talk to children about serious illness, as well as creating short films to raise awareness of the importance of effective communication with children.

08:45 Login
08:50 Welcome & Introduction
09:00 How do children approach death & grief? (Dr Louise Dalton & Dr Elizabeth Rapa)
10:00 Break
10:10 Working with teenagers and young adults (Dr Emily Harrop, Rosa Mowles van der Gaag, Emma Jordan, Dr Jo Wilson)
11:10 Break
11:25 Death & grief in the Digital Age (James Norris)
12:25 Cultural Differences surrounding Death & Grief (Lis Whybrow)
13:25 Summary
13:30 Close

Aims of the day
• Consider contemporary issues in death and grief in more detail
• Appreciate how different factors affect different generations
• Deepen understanding of the diverse issues faced by people approaching death/experiencing grief
• Analyse ways in which health & social care professionals can help those to whom they offer care