HOW CAN WE WORK TOGETHER TO SUPPORT TERMINALLY ILL PEOPLE IN WALES?

Natasha Wynne Marie Curie Policy & Public Affairs, Wales @NatashaWynne1 @MarieCuriePA

Doing the Right Thing at the Right Time17 July 2014

WHAT DOES MARIE CURIE DO?

MARIE CURIE IN WALES 3

• We’re here for all people with terminal illnesses and their families and carers

• Nurses provide free care to over 3,000 people a year

• A nursing service and more

• Giving people the choice to die in their place of preference

WHAT IS A ‘GOOD DEATH?’ 4

• being pain-free – pain control on tap, administered by experts• being peaceful and calm, with those chosen by the terminally ill person

present and not alone• a feeling of control over the process (for the terminally ill person and

family)• a private space for family being available• being at home (for some)• knowing what to expect, and who does what• being able to summon help 24/7• an appropriate level of physical and personal care that respects dignity• individuals accepting their diagnosis and being at peace

‘Difficult Conversations’ report, Marie Curie Policy & Public Affairs, March 2014

END OF LIFE CARE AND SOCIAL HOUSING REPORT

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How will we meet the needs of dying people in Wales into the future?• Over 60% would like to die at home but only 22% do• 60% die in hospital – inappropriate, unnecessary and unsustainable• 1 month of final year in hospital• More people living longer, complex conditions, dementia – physical/

social/ housing needs are changing• Shortfall of informal care givers• Only 16% have talked about end of life wishes• Financial pressures on public services

Need for greater focus on care and support for dying people in the community including all potential partners and longer term view.

END OF LIFE CARE AND SOCIAL HOUSING REPORT

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Why social housing providers?

• Increasingly recognised role in achieving health and wellbeing outcomes– Preventing admissions, facilitating discharges, Care & Repair,

adaptations, independence at home– See Kafka Brigade report, 2011

• Relationships with tenants

• Suitability of facilities – sheltered housing, extra care schemes

• Some provision of domiciliary/nursing care

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Aims of the survey

• How aware of end of life issues are social housing providers?• What support is provided to tenants?• What support and training is provided to staff?• What challenges do organisations face when trying to support/ care for

tenants?• How could social housing providers be better supported to facilitate high

quality end of life care for their tenants?

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Examples of what’s already working well for some

• Effective training and support networks for staff

• Strong relationships with tenants - advocacy

• Partnership working across sectors

• Sensitively designed socially-inclusive specialist accommodation

• Creative and flexible use of resources

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Identifying the challenges

• Recognising death and dying as a relevant issue – by/for housing

• Empowering staff– “I was looking at how we plan our care and support and it was the one

thing that people said ‘I find it really hard’ – forward planning… some of the staff find it a little bit ghoulish – it’s like ‘Here you are, Hello, and how would you like to be buried?’ It’s something that I’ve recognised looking at people’s care and support plans… very often those sections are left blank.”

• Misunderstandings about what housing can do

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Identifying the challenges

• Coordination and communication with other agencies

• Dementia

• Finances– “As an organisation I’m sure that we could reduce the costs or

workload to other organisations by providing support in end of life situations. However, we could do much more if they could share a small proportion of their savings with us. If a tenant needs a stair lift to come home from hospital, we perceive this as expensive compared to our adaptations budget whilst health might perceive it as cheap compared to their bed blocking costs.”

END OF LIFE CARE AND SOCIAL HOUSING REPORT

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What next?• End of life to feature in discussions between health, social care and

housing• Housing organisations should be supported to know where to access

existing info and resources – gaps should be addressed• Staff training – end of life specifics for frontline, difficult conversations,

support to maintain own wellbeing, ereavement• Creative and flexible use of resources in extra care• Potential role of LAs in facilitating proactive inclusion of housing

organisations in end of life planning – Joint Localities Boards• Orgs responsible for setting policy, strategy and budgets should

recognise role social housing providers can play in the provision of sustainable care and support for terminally people that more closely meets their needs and wants.

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Points for discussion

• What does good end of life care look like? How does/could my organisation facilitate this? What barriers exist?

• How could my organisation support/be supported by others to produce high quality care and support for people with terminal illnesses?

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THANK YOU

DIOLCH

Natasha Wynne Marie Curie Policy & Public Affairs, Wales @NatashaWynne1 @MarieCuriePA