NHS Devon & Devon Council

1. NHS Devon & Devon Council Dying Matters in Devon ‘Let’s talk about it’ Implementing the End of Life Strategy Joint Engagement Board. Monday 18th October 2010 NHS Devon EOL Programme Manager: Lorna Potter Graham Varley Strategic Development Lead ACST DCC

2. Dying Matters in Devon North Devon District Hospital & North Devon Hospice & Children’s Hospice • 267 Residential Care Homes • 80 Dual Registered Nursing Homes • 182 EMI Homes • 11,500 C/H staff • 12,000 Domiciliary Care Workers • 107 GPs • 8 GP Consortia • 21 Community Hospitals • Community Provider services • Leadership – EOL SCG Royal Devon and Exeter FT Hospital & Exeter Hospice Plymouth Hospitals NHS Trust & St Luke’s Hospice South Devon Healthcare FT Hospital & Rowcroft Hospice

3. Dying Matters in Devon • Population of 755,000 & rising • Higher proportion of older old (26% over 65 yrs by 2021) • 17% live alone Number of small coastal & market towns, many small villages, Exeter city, plus a large rural area • Devon estimates 12,000 + have dementia

4. Poor public awareness, death & dying a taboo EOL seemed low priority for local NHS & Social Care Little interagency sharing of EOL plans Poor co-ordination of care across sectors , big gap in 24 hour cover High % dying in our acute hospitals sometimes against their wishes – more choice wanted to die at home Inadequate support for carers Fragmented bereavement services Inadequate educational provision for staff Suboptimal care delivery seen in some of our hospitals, care homes and the community Care homes asked for help Oct 2007 We asked …….The public told us….

5. NHS Devon & Devon County Council Partners NHS Direct Prisons General Practices Hospitals NHS Devon & Devon County Council Community Nursing PCT –commissioners & providers Ambulance & Out of Hours Services Domiciliary & Rapid Response Social Care, Devon Care Homes and domiciliary care providers have a key role to play in hospital avoidance, promoting wellness in clients, facilitating a ‘peaceful death’ and signposting in carer’s and families into bereavement services when required. Intermediate / Complex Care Teams Social & Community Care Social Services Social Services Community Children & Young Peoples Services Mental Health Teams (DPT) Hospices & Specialist Palliative Care Teams Nursing & Care Homes

6. Place of death 2008-2009 Approximately 8000 deaths per annum in Devon • Target is to reduce acute hospital admissions for dying people by half in the next five years • Target is to increase the range of choices for people to enable them to die at home (including nursing and care homes) • Target to reduce admissions hospital admissions from nursing and care homes by 10% per annum for next three years • Target is to increase the numbers of people with an Advance Care Plan

7. Implementing the EOL Strategy in Devon Universal Advance Care Plan Tools Roll out of GSF & LCP Best practice Integrated Care Pathways Public & Professional Awareness Developing clinical or care champions in all settings Single Point Access Co-ordination Locality Palliative Care Register Increase alternatives to & Hospital admission Practice Registers By March 2011…

8. Implementing the EOL Strategy in Devon Developing key worker & care champion roles 5Macmillan GP GSF Facilitators Rapid response helpline in OOH Doctors, Nurses & Dom Care 24/7 all care settings Education & Training resources targeted across health & social care 4 GSF Care Home Facilitators Increased Carer Support workers Just in case medicines + & 3yr rolling education programme Bereavement Services Directory By March 2011…

9. Dying Matters in Devon: so what are we doing….. Joint NHS Devon & Devon County Council EOL Strategy Dying Matters Stakeholder conference used to inform strategy July 10 & Nov 2nd Liaison with NHS Northeast – development of a good death charter Proposing a similar charter for Young People informed by Youth Ambassadors Senior Council for Devon & Locality forums – awareness raising workshops on Dying Matters Potential – Devon Retirement Pack All systems & organisational approach to implementing EOL strategy Developing a Health & Wellbeing Forum for Dying Matters – locality GPs, hospices, com’s leads, public health, voluntary sector = developing a locality approach to events Exploring utilising Dying Matters national material, web sites, local media – particularly local radio…. Considering how to use Social Networking websites Bereavement Services Directory Exploring work with the local Art Colleges – developing education material Appointed Macmillan GSF Leads –peer educators

10. Dying Matters - the Challenge Nationally only 29% of people talked about their wishes in 2009 - less than in 2006 (34%) 500,000 people die each year in England – 60 % in hospitals, yet 70% of people would like to die at home 99% said death should be discussed ahead of time 63% had made a will 17% had documented their wishes 70% had discussed wishes with family 94% would be happy for their ACP to be stored on an electronic database in Devon - ADASTRA Devon Population Snapshot survey 145 people 6th July 2010 Devon survey A /A 45% wanted to die at home 5% said they would not 49% said don’t know

11. Planning for a ‘good death’ • Consider legal and financial matters: • Making a will, the costs of dying, insurance, a funeral plan • Financial help to support you and your family with care costs, transport • Organ donation - saving other lives • Make a plan for what you want when you die: • The type of care you would like towards the end of your life • Where you would like to die • Whether you have any particular worries you would like to discuss about being ill and dying • Whether you want to be resuscitated or not • Consider how you would like to be remembered: • What would you like people to know before you die • Messages, memory boxes, videos for loved ones • Plan your funeral arrangements: • What do you want, burial, cremation, green funeral, other • Any service, celebration of your life • What songs, messages, themes • Who do you want to attend • Prepare for bereavement • If you need help or advice, find out where to go for support • Find out what to do about legal and financial matters after death

12. Success Indicators Knowledge: • More carers aware of the wishes of the cared for • More knowledge about possible options that could improve quality of life • More knowledge of financial implications of death and need for advanced planning • Better understanding about sources of advice and support Attitudes: • Less fear of death • and the process of dying • Less avoidance of dying people and relatives • Less regrets- no rehearsal Behaviours • Wishes of dying people discussed and recorded • Wishes to donate organs discussed and recorded and more people donating organs-promoting positive ‘life-giving’ • Funeral wishes discussed and recorded • More wills written • More open professional and public discussion about death and dying and more wishes met • More open discussion by public and professionals about grief and loss

13. Questions for Public Consultation on the Devon EOL Strategy • Is the Devon EOL Strategy clear and accessible? • Will the strategy raise public awareness of Dying Matters in local communities? • Will the strategic approach contribute to the people of Devon having more choice of being able to die at home if this is their wish? • Does the strategy adequately cover issues of equality, diversity and human rights? • Does the strategy reflect to the public, a joined up approach of all statutory agencies, the independent and voluntary sector?

14. Questions for Public Consultation on the Devon EOL Good Death Charter • Dying Matters Conference 6th July consulted on the Good Death Charter. Feedback revealed having the charter was a good thing, but it should be further informed by public feedback. • Delegates thought the charter should be consulted upon through the following mechanisms: word of mouth, via health & social care professionals, through hospices and charities communication leads, TV and local radio, local press, libraries, via internet and website responses, road-shows, leaflets, brochures / posters, via LINKs, Citizens Advice Bureaux, Health & Social Care Forum, Senior Council for Devon, Age UK (formerly Age Concern & Help the Aged), Carers Link, FUSION, Living Options. • Does the JEB Board support the principles of the Good Death Charter?

15. Request for JEB Boards Advice • Are the questions we have identified the right questions to be asking the public to determine whether this is a good strategy? • How will we ensure that we have consulted as effectively and comprehensively as is warranted by the strategy?