Greater Manchester & Cheshire Cancer Network WELCOME! Kim Wrigley End of Life Care Lead Greater Manchester & Cheshire Cancer Network

End of Life Care is care that: “Helps all those with advanced, progressive incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support”

The End of Life Care Strategy: Rationale (1) Around 500,000 people die in England each year. This will rise to around 530,000 by 2030 Before 2008, DH did not have a comprehensive strategy on end of life care Some patients receive excellent care, others do not 54% of complaints in acute hospitals relate to care of the dying/bereavement care (Healthcare Commission 2007) Hospices have set a gold standard for care, but only deal with a minority of all patients at the end of their lives

The End of Life Care Strategy: Rationale (2) There is a major mismatch between people’s preferences for where they should die and their actual place of death Most would probably like to die at home Only around 18% do so with a further 17% in care homes Acute hospitals accounting for 58% of all deaths Around 4% in hospices Only around one third of general public have discussed death and dying with anyone

The End of Life Care Strategy: Scope The Strategy Covers all conditions Covers all care settings (e.g. home, hospital, hospice, care home, community hospital, prison etc.) Has been developed within the current legal framework

The End of Life Care Pathway (Chapter 3)

The Northwest End of Life Care Model Last Days of Life First Days after Death 1 year + Advancing disease Bereavement 6 months 1 2 3 5 The Northwest End of Life Care Model 4 Death Increasing decline The pathway model identifies five key phases for end of life End of Life Care Supportive and Palliative care needs are met for all those with an advanced progressive incurable illness, to live as well as possible until they die’. Pts living with the condition they may die from- weeks/months/ years All types of pt (cancer, organ failure ,frail elderly /dementia pts )

Brief update on the End of Life Care Strategy Second Annual Report: • Published August 2010: – “Much good work across England” (Tom Hughes- Hallett) – “Challenge of finding ways to do more for less” (T. H-H) – “Some areas of the NHS are investing and some aren’t.” (T. H-H) – “Real sense that momentum is building” (Mike Richards)

The Workforce Within health and social care there are: Approximately 2.5 million staff Segmented into 3 broad groups: A: Staff working in Specialist Palliative Care B: Staff who frequently deal with end of life care C: Staff who infrequently deal with end of life care Of these only 5500 staff work in Specialist Palliative Care Services

It is recognised that a cultural shift in attitude and behaviour related to end of life care must be achieved within the workforce Workforce development is key to the overall success of the end of life care strategy Four areas have been identified as core common requirements:- Communication skills training; basic, intermediate, advanced Assessment of needs and preferences Advance Care Planning Symptom Control

Liberating the NHS The White Paper Equity and excellence: Liberating the NHS, published on 12 July 2010, sets out proposals for the NHS to become a truly world-class service that is: easy to access, treats people as individuals and offers care that is safe and of the highest quality It set out a vision for an NHS that: puts patients at the heart of everything that we do achieves outcomes that are among the best in the world empowers our clinicians to deliver results based on the needs of patients

What would success look like? For patients and service users, there should be “no decision about me, without me” People should be involved as much as they want to be in every decision about their care: what care they want and how and where they want it delivered In order for this to happen, people actually need to be given a greater range of choices, and high quality information to help them take greater control of their care Information is used routinely to support the delivery of safe, high quality, people-centred care

Greater choice and control Many people value being able to make choices, and giving people more choice can lead to better outcomes and experiences, can promote equalities and reduce inequalities We want the presumption to be that everyone has choice and control over their care and treatment, and choice of any willing provider for NHS care, wherever relevant When making these choices, decision-making about their treatment or care should be shared between them and their health and care professionals

What does ‘Greater choice and control’ propose? Liberating the NHS: Greater choice and control proposes: increasing the current offer of choice of healthcare provider, going further by enabling people to choose a named consultant-led team, giving people more choice of where to have diagnostic tests and more choice of where to have their treatment after a diagnosis has been made. offering more choice in maternity services, mental health services and more choice in end of life care. ensuring people are offered a choice of treatment as a matter of course wherever feasible, ensuring people with long term conditions can make choices about their care and are given the confidence to manage their condition.

Improving health care outcomes; End of Life Care Focus on outcomes -increase safety improve patient experience •NICE End of Life Care Quality standards •Up to 12 statements •Adding value to Quality Markers •Stakeholder meeting 17 September 2010 •Development process 9-12 months

National Support • Quality, Innovation, Productivity and Prevention Agenda • National End of Life Care Programme –Disseminating best practice and tools via website, events, newsletter and publications, facilitators • National End of Life Care Intelligence Network • e-Learning for Health Identify organisations that can be sites for rapid improvement and facilitate sharing of learning via website and events • Supporting people to live and die well: a framework for Social Care at the end of life

Northwest End of Life Care Operational Group Clinical Pathway Group 5 key aims Multi Professional Education and Training Funding Investment Plan

References http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_120608.ppt#290,12,Engagement www.endoflifecareforadults.nhs.uk http://www.gmccn.nhs.uk/hp/OurWork/EndofLifeCare

Thank you Kim.wrigley@manchester.nhs.uk Tel: 0161 920 9726