How to Die Well – Hope For Home Conference 2021

10.00 – 10.15

Introduction and Welcome: Sarah Burnard, Trustee, Hope for Home

10.15 – 11.00

Plenary session

“The Art of Dying”:

Nicola Kendall, Namaste Care International Champion for Hospices and PhD student

How we die is a legacy to those we leave behind, so how can we make that legacy a positive one?

Main learning point:

The COVID pandemic has brutally exposed and exacerbated the social isolation which people living with dementia and their families experience. It has highlighted the importance of supporting and enhancing the web of relationships which exist around that family, as well as the benefits of facilitating good planning for end of life care.

11.00 – 11.15

Morning Break

11.15 – 12.15

Morning Workshop Sessions (Participants choose one Workshop A, B or C)

Workshop A:

Working with People with Dementia to Develop Anticipatory (End of Life) Care Plans

Workshop Lead: Jim Melville, Manager, Campbell Snowdon House, Bridge of Weir, Renfrewshire, Scotland

Workshop outline:

Anticipatory care planning is about choice and self-determination establishing a resident’s views and wishes about their journey ahead in the future. For someone living with Dementia how do we help plan their journey.

Main learning point:

· Anticipatory Care Plan – When / Where / Why

· Involvement of my plan

· The benefits of good ACP

· Good life before good death

Workshop B:

Namaste Care: Honouring the Spirit Within

Workshop Lead: Joanne Morton, Namaste Lead, St Joseph’s Hospice, Hackney, London Workshop outline:

· Brief Introduction (what it is, background, model)

· How Namaste care makes a difference

· Case Study – discussion with volunteers

· Carer Input

· Q & A session (15-20 mins)

Main learning point:

To enable carers to use Namaste approach to improve quality of care at the end stage of life.

Workshop C:

A Question of Meaning – Playlist for Life

Workshop Lead: Andy Lowndes, Vice Chair and ‘The Music Detective’, Playlist for Life

Workshop outline:

In this presentation Andy will describe the benefits personalised music can have on health and wellbeing and describe the effect music has on the brain.

Main learning point:

Andy will demonstrate how to build a playlist utilising the Playlist for Life approach.

12.15 – 13.00

Plenary session: Feedback from Workshop leaders – A, B, C

13.00 – 13.45

Break for Lunch

13.45 – 14.30

Plenary session

“Starting a Namaste Care Project during a Pandemic… a story of lessons learned and of unexpected benefits”

Sally Muylders, Community Engagement Manager, St Clare Hospice, Essex

Main learning point:

Unexpected outcomes over time, the power of momentum and resulting, surprising, improved sustainability.

14.30 – 15.30

Afternoon Workshop Sessions (Participants choose one Workshop D, E or F)

Workshop D:

Supporting from Diagnosis to End of Life – improving outcomes for carers of people living with Dementia at home

Workshop Lead: Gina Gardner, Dementia Support Worker, St Giles Hospice (Thelma Harvey Prize winner) and Pat Roberts, Lead for Dementia Support, GreenSquareAccord Housing Partnership, Staffordshire

Workshop outline:

Describing how The Unpaid Dementia Carer at home course came about, how it developed through COVID, and the issues that arose, including the different types of Dementia, the importance of Nutrition and Hydration, and planning for the future with Advance Care Planning.

Main learning point:

The informal carers course aims to equip people with added knowledge and the confidence to support their loved ones from diagnosis to end of life by covering a range of topics including how carers can look after themselves, how to deal with challenging behaviours and support around having Advance Care Planning discussions.

Workshop E:

Who Cares for the Carers

Workshop Lead: Graham Gardiner, CEO, Age UK Lambeth, London

Workshop outline:

Graham will be looking at not only what support carers can access, but also exploring how carers can look after themselves whilst being responsible for looking after someone else. This can be guilt inducing, fraught and frustrating. Is there another way of looking at this? Let’s spend some time thinking about strategies that work and of course finding resources to help.

Main learning point:

At the end of this session, we hope carers will feel more optimistic about looking after themselves and getting the help that they need. We hope that service providers help find ways to plug the gaps.

Workshop F:

Carer Resilience

Workshop Lead: Sarah Russell, Lead Nurse for Palliative and End of Life Care, Portsmouth Hospitals University NHS Trust

Workshop outline:

We will explore the evidence and experience of the duality of caring/carer resilience and what this means for health and social care practitioners and us as individuals.

Main learning point:

At the end of the workshop, participants will take away one action point for their practice and experience.

15.30 – 15.45

Plenary session: Feedback from Workshop leaders – D, E, F

15.45 – 16.00

Closing remarks: Harriet Gross, Chair, Hope for Home

Sarah has over 40 years’ experience of working in the healthcare sector, both as a clinician and as a General Manager. She has worked in many multi-agency settings, with both clinicians and managers, including with the NHS, Social Services, Voluntary Sector and the Police. Sarah has a background in economics and finance and has extensive experience of developing public health policy. She has worked in the hospice sector for over 10 years, specialising in community engagement and public participation and has significant experience of working with ‘hard to reach’ groups. Sarah is a founding Trustee of Hope for Home and has a special interest in supporting people with dementia and their carers living at home.

Nicola has been Namaste Lead at St Cuthbert’s Hospice in Durham for the past 5 years but has now left to focus on her PhD research at Durham University looking into the benefits of Namaste Care for people living with dementia. Nic is a qualified psychotherapist, complementary therapist, and mindfulness teacher, but is learning the most valuable lessons from her Dad who is living with Lewy Body Dementia and from her Mum’s experience of caring for a spouse.

Jim worked for Enable Scotland as a Team Leader for a number of years supporting people with learning and physical disabilities. He was Deputy Manager of Marcus Humphrey House for 5 years, moved to Campbell Snowdon House in 2014, and has been Manager at Campbell Snowdon House since 2017. Jim became a Dementia Champion in 2017 for Inverclyde and has also previously facilitated Dementia training with the Health and Social Care Partnership (HSCP) in Inverclyde. Jim is involved with Healthcare Improvement Scotland; Inverclyde Dementia Care Co-ordination Learning Group; Inverclyde Learning Disabilities; and Advanced Dementia Care Home group. Jim enjoys reading and has a very busy family life with a 1 year old and another on the way.

Joanne joined St Joseph’s Hospice in February 2018 as a volunteer massage therapist and has been part of the Namaste team since January 2019. Joanne has a background in mental health with 15 years’ experience working in the social care sector.

Joanne is currently the Namaste Care Co-ordinator for the Tower Hamlets Namaste Care Service.

Andy Lowndes, Vice Chair and ‘The Music Detective’, Playlist for Life

Andy is a former mental health nurse and a retired academic from Glasgow Caledonian University. Around 8 years ago Andy founded Playlist for Life with writer and broadcaster Sally Magnusson following Sally’s experience in caring for her mother.

As ‘The Music Detective,’ Andy helps people with dementia and works with families and carers to identify Personally Meaningful Music for the person with the disease. In this presentation, ‘A Question of Meaning’, Andy will present real life examples supporting the growing international research that shows such music can have almost magical results as part of an individual’s care.

Sally has worked in East London and Essex for the last 25 years in various roles, but always with the community. She began her career working with children and young people, training as a youth worker. Sally thereafter worked in a range of settings – alternative education; youth homelessness prevention; sex and relationship education; and crime prevention. Throughout her career, community development has been at the core of her work professionally and voluntarily within her own community. She joined St Joseph’s Hospice in 2015 as project manager for Compassionate Neighbours, a community befriending project which has grown beyond the gates of St Joseph’s to 12 other hospices. Sally currently works as a Community Engagement Manager at St Clare Hospice and has embarked on a number of projects and programmes, one of which is the Namaste Care project that we will learn about in this session.

Gina is a Dementia Support Worker at St Giles Hospice. Her role includes delivering an award-winning carers’ course and supporting people living with dementia and the care home staff and unpaid carers who look after them.

During her 6 years at St Giles, Gina has also worked with the Hospice at Home and Care at Home teams, supporting people who wanted to stay at home rather than entering the hospice at the end of their lives.

Pat is Lead for Dementia Support with Greensquareaccord, overseeing various Dementia Support Services ranging from pre diagnosis support; to Dementia Cafés around Walsall; to end of life care, including support in a clinical environment at Walsall Manor Hospital; she also delivers an award-winning carers course to family carers. For the past 19 years, Pat has worked for Greensquareaccord in a variety of care and support roles, but always having a passion for working with residents and family members living with Dementia. In Spring 2021, Greensquare and Accord Housing Association merged to become Greensquareaccord.

Graham is an experienced social entrepreneur, who discovered that the monitoring he hated was the key to succeeding in tenders and grant applications. With a varied career stretching from Church Minister; homeless hostel manager; founder of several social enterprises; and supporting charities to be more entrepreneurial without losing their soul.

Since September 2016, Graham has been CEO of Age UK Lambeth, a local independent charity offering a wide range of services around the Borough. Graham has a background in homelessness, mental health and social entrepreneurship and one of his hostels had the world’s first TimeBank for homeless people. He created one of the UK’s first ‘social prescribing’ services in GP surgeries in Mansfield in the early 2000’s and has been an advocate of brief interventions as part of a community response to wellbeing ever since. Graham is a member of the Lambeth Together executive leadership and chairs the Neighbourhood and Wellbeing Alliance.

Sarah has worked as a palliative and end of life care nurse for over 25 years in hospital, care home, community and hospice settings. For 18 of those years, she was the primary carer for her father (frailty and multiple strokes) and her mother (Alzheimer’s disease), balancing the duality of being a family carer, nurse, wife, daughter, sister, aunt, and friend.

Harriet is Emeritus Professor of Psychology at the University of Lincoln. Her academic career started as a researcher on a project looking at the education of children with special needs. In 1989, she became a lecturer in Psychology at Loughborough University, where she spent many happy years teaching. In 2007, Harriet moved to Lincoln as Head of the Psychology Department and part of the University’s senior leadership team, retiring last year as a Pro-Vice Chancellor.

Harriet’s research has been prompted by what people find personally meaningful, particularly around times of transition. Her work has expanded from children’s development to exploring people’s experiences across the lifespan, including aspects of memory, work and physical activity in pregnancy, and the value of gardening for residents moving into sheltered housing. Most recently, Harriet has been interested in the value of gardening for wellbeing.

As well as being Chair of the Trustees of Hope for Home, she chairs the Board of Threshold Studios, an arts and culture organisation. Harriet became involved in supporting Hope for Home through its founder, Sarah Burnard, whose dedication to improving the lives of people with dementia and their carers is completely inspiring.