#EldersForum2018 #AgeingInCommon #NCF2018

#EldersForum2018 #AgeingInCommon #NCF2018 SKY 4 – End of Life Care Claire Henry MBE, Director of Improvement & Transformation, Hospice UK & Kate Ibbeson, Member of the People in Partnership Group, Hospice UK #EldersForum2018 #AgeingInCommon #NCF2018

End of life care What matters to families Kate Ibbeson Member of People in Partnership Forum Claire Henry MBE Director of Improvement and Transformation

Context

Vision Our vision is palliative and end of life care is for every person in need. We want to bring about the wide-reaching social and cultural transformation that is needed in how adults and children in the UK are cared for at the end of their life. We are committed to empowering individuals and communities to embrace the ethos of hospice care and extend its breadth and reach to improve everyone’s experience of death, dying and bereavement.

The Strategy : four strategic goals 1. Extend reach in excellence in EoLC across any setting 2. Tackle inequalities and widen access 4. Empower a strong dynamic and responsive EoLC system 3 .Work with communities to build resilience and capacity to care for those at end of life

National Policy – family involvement Department of Health (2016). Our Commitment to you for End of Life Care. The Government Response to the Review of the Choice in End of Life Care. London: DH

6 commitments to each person at end of life Honest discussions Informed choices about care Personalised care plans for everyone Opportunity to share your personalised care plans with your care professionals Involvement of family, carers and people important to you in discussions about your care, to the extent you wish Know who to contact at any time

National Policy

The right to a family life what does this mean?

End of life care has many aspects There was a lot of chaos happening when Dad arrived home from hospital. Amongst the hustle of paramedics handing over to nurses and medicines being checked in, I turned around to find my Dad and youngest looking at each other, oblivious to the world around them. I knew that my dad didn’t have long to live and my youngest will never have the pleasure of remembering times with his Grandad, so I quickly took a photo of them both to show him when he’s older. The photo shows my Dad’s love of children. He loved nothing more than having his grandchildren come to visit and would enjoy spoiling them with a biscuit (or two) from “Grandad’s tin”. It also shows that my Dad got to have his wishes and come home to die in a non clinical setting, which meant he could have his grandchildren come visit him in a setting that was familiar to them all. Sara ‘This photography shows my late grandmother and grandfather. They were married for over 60 years and were very much in love’ Miriam Winsor This is my Dad, Tom Childs. I took this the day he left hospital and came home to die from mesothelioma. I sat my youngest, Elis, on his knee moments after he arrived’. Sara Burns

what else has an impact on family life pre and post death Making a will? 35% registering as an organ donor? 33% Talking about your funeral wishes? 30% talking about your end of life wishes? 25% writing down your wishes? 7% many people have done none of these? www.dyingmatters.org

Human right to family life within a care home What is important to us within our family? What and who makes up a family? What do we enjoy doing as a family?

What are the barriers to family life How has family life change now a family member is living in a care home What does this mean to the family When families feel excluded

Mum and Dad

My mum Inoperable oesophageal cancer diagnosed within weeks of Dad’s death No real interaction with us as a family Deterioration at home No hospice bed available “Palliative Care” bed found in a local care home Care felt disjointed I felt very isolated

Consider What could have been done to improve the experience for both my mum and my family?

What would have made the difference Stronger foundations to set the scene for who was important to Mum – way before her death More staff interaction with Mum and me From the start of care Staff within the home Staff facilitating input from other agencies The location of her bedroom A more cohesive plan for her care Signposts to support Someone organising for me to have Mum’s belongings after she died

My friend Joan

Joan’s care Multiple hospital admissions, initially with heart failure, then with ovarian cancer Residence in nursing home Supportive care for 6 months Good interaction with her ongoing medical care I continued to feel part of her care Joan had a good death

Consider What made the difference to the experience for both Joan and the family?

These are what made the difference It was clear who was supporting Joan from the outset I was made to feel welcome to input into Joan’s care by all staff involved Higher level of proactive interaction with both Joan and me

What can you do as social and health care staff? Identify who is the significant person and who has that family role? It could be friend or neighbour. What's important to the person at the end of their life? What support do you need? Ask the question what support does the family have?

See people as individuals Take note of the little things What can we do? See people as individuals Take note of the little things Keep thinking “Have I asked what's important to them today?”

For more information c.henry@hospiceuk.org www.hospiceuk.org 020 7520 8255 @chenry_ kateibbeson@hotmail.com @shefcancermafia

#EldersForum2018 #AgeingInCommon #NCF2018