1. End of Life Care Strategy Almost one year on Professor Mike Richards July 2009

2. End of Life Care Strategy Aims: To bring about a step change in quality of care for people approaching the end of life To enhance choice at the end of life To deliver the government’s manifesto commitment to double investment in palliative care

3. End of Life Care Strategy Context: First ever national strategy on end of life care Developed in parallel with the Next Stage Review Now nearly one year since publication

4. End of Life Care Strategy Key elements: Societal level:Actions to raise awareness of death and dying Individual level:Integrated service delivery based around a care pathway Infrastructure:Workforce development, measurement, research, funding, national support etc.

5. Support for carers and families Information for patients and carers Spiritual care services Step 2 Assessment, care planning and review Agreed care plan and regular review of needs and preferences Assessing needs of carers Step 3 Coordination of care Strategic coordination Coordination of individual patient care Rapid response services Step 4 Delivery of high quality services in different settings High quality care provision in all settings Acute hospitals, community, care homes, hospices, community hospitals, prisons, secure hospitals and hostels Ambulance services Step 5 Care in the last days of life Identification of the dying phase Review of needs and preferences for place of death Support for both patient and carer Recognition of wishes regarding resuscitation and organ donation Step 6 Care after death Recognition that end of life care does not stop at the point of death. Timely verification and certification of death or referral to coroner Care and support of carer and family, including emotional and practical bereavement support Discussions as the end of life approaches Open, honest communication Identifying triggers for discussion Step 1 The End of Life Care Pathway

6. End of Life Care Strategy: Action at multiple levels National:Support for implementation Monitoring SHA:Implementing Darzi pathways Workforce development PCT:Local action plans Commissioning Providers:Delivery of integrated high quality care (including Third Sector)

7. End of Life Care Strategy: National Support for Implementation (1) DH End of Life Care Policy Team (Tessa Ing) National End of Life Care Team (Claire Henry) Raising the profile and setting the direction  The strategy; operating framework; vital signs Engaging stakeholders  Roadshows; professional groups; newsletters Raising Awareness  Working with NCPC on the National Coalition on End of Life Care

8. End of Life Care Strategy: National Support for Implementation (2) Care pathway developments  Triggers  ‘Planning for your future’  End of Life Care Register pilots  Quality Markers  Adaptations of LCP (ITU and Neurological)  Enhancing the Healing Environment (King’s Fund)

9. End of Life Care Strategy: Quality Markers These provide PCTs and providers with a simple checklist of areas where they may be able to take action – based on the strategy and appropriate measures PCTs38 QMs Primary Care 6 QMs Acute Hospitals 14 QMs Community Hospitals11 QMs Care Homes11 QMs Hospices/inpatient SPC 9 QMs Community SPC 7 QMs Ambulance Services 3 QMs OOH Medical Services 4 QMs

10. Workforce development  Competency development  e-learning  Communication skills training (12 pilots) End of Life Care Strategy: National Support for Implementation (3)

11. Measurement Audits (LCP and ADA) Surveys of bereaved relatives (VOICES) End of Life Care Intelligence Network Research Rapid Review of research opportunities being undertaken by NCRI in July 2009 End of Life Care Strategy: National Support for Implementation (4)

12. End of Life Care Strategy: Implementation summary A good start has been made on implementation at national, SHA and local levels Of course, much more needs to be done. Full implementation will take several years. However, significant improvements can and should be delivered quite quickly

13. The Centre for Housing Policy http://www.york.ac.uk/chp/ End of Life Care in Housing with Care Settings Karen Croucher Centre for Housing Policy University of York

14. The Centre for Housing Policy http://www.york.ac.uk/chp/ Housing with care projects in CHP Evaluation of Hartrigg Oaks Review of evidence around housing with care Comparative evaluation of different models of housing with care Tracking the development of Hartfields http://www.jrf.org.uk/publications Housing LIN Factsheet: Delivering End of Life Care in Housing with Care Settings

15. The Centre for Housing Policy http://www.york.ac.uk/chp/ Housing with care – key concepts Range of definitions ‘Concept rather than a housing type’ Promotes independence Reduces social isolation Provides alternative to residential or institutional care Provides a “home for life” Improves quality of life for residents

16. The Centre for Housing Policy http://www.york.ac.uk/chp/ UK evidence base Diversity of provision Value placed by residents on combination of independence and security Health, well-being and quality of life Reducing social isolation? Alternative to residential care? Balance of fit and frail? Home for life? Cost effectiveness and affordability?

17. The Centre for Housing Policy http://www.york.ac.uk/chp/ Housing with care - promoting independence High levels of satisfaction are consistently reported by residents of housing with care Combination of independence and security that is greatly valued by residents Notions of “sanctuary” Not always a shared understanding of ‘independence’ between residents and providers “Different way of life”

18. The Centre for Housing Policy http://www.york.ac.uk/chp/ Independence and choice “I thought I would never find anywhere else that would give me this degree of independence, plus communal services, plus eventual caring until you die, which is what I wanted. I think the last is very appealing because it is when you are very old and very frail that you become most of a burden to the younger members of your family who have to choose for you. And if you’ve lived an independent life you want to make your own choices as much as possible”. Hartrigg Oaks Resident

19. The Centre for Housing Policy http://www.york.ac.uk/chp/ Housing with care - reducing social isolation Housing with care offers opportunities for social interaction and companionship Very frail, people with sensory and/or cognitive impairments on the margins of social groups and networks Tensions around integration of fit and frail Use as a community resource?

20. The Centre for Housing Policy http://www.york.ac.uk/chp/ “The main reason was the inevitability of losing one’s partner, to make friends and companions before one of us – as inevitably would be the case – departed this life”. “To come here you have to admit that you’re older, which is very hard to admit. And that the future might hold more disabilities for you. You have to be realistic. So you have to look ahead, OK, I’m in that age group…you know, that I’m going to be - before too many years have gone – I’m going to be facing death myself, or a lot of my friends. And I think for some people it’s been quite hard to see people with disabilities around here. That’s something you have be prepared for before you come.” Hartrigg Oaks Residents

21. The Centre for Housing Policy http://www.york.ac.uk/chp/ Housing with care – home for life? Few if any schemes where residents could age in place under any circumstances Lack of clarity when people should leave ‘Home for life’ is a misleading description, Frequently moves to residential and nursing home care reported –Challenging behaviours/dementia –Flexibility of care –Numbers of residents with high level needs –Willingness of funders to pay for additional care

22. The Centre for Housing Policy http://www.york.ac.uk/chp/ End of life care: missing element in housing with care research Sensitive topic, not usually directly addressed in research…. “Different way of life” Stressors associated with living among a community of older people End of life care is a “pull” factor for some people

23. The Centre for Housing Policy http://www.york.ac.uk/chp/ “If either of us need to go into a nursing home, even if we’re pretty old and the other one’s pretty fragile and in the bungalow, nevertheless you’re near enough to be able to come and see them. So you don’t want your other half to be somewhere else later on, you want to die on site, sort of thing…” Hartrigg Oaks’ Resident

24. The Centre for Housing Policy http://www.york.ac.uk/chp/ What does independence mean? “Attempts to combat ageism by promoting a positive, healthier and more independent image of old age can also marginalise the needs of vulnerable older people. Indeed a preoccupation with independence in much of the policy literature obscures any meaningful debate about how to improve the quality of life of older people facing death”. Source: Seymour, 2005, End of Life Care: Promoting Comfort, Choice, and Well-Being for Older People. Policy Press.

25. The Centre for Housing Policy http://www.york.ac.uk/chp/ End of Life Care in Housing with Care Settings: Possibilities “End of life care for seniors requires an active, compassionate approach that treats, comforts and supports older individuals who are living with, or dying from progressive or chronic life threatening conditions. Such care is sensitive to personal, cultural and spiritual values, beliefs and practices and encompasses support for families and friends up to and including the period of bereavement” Ross and Fisher (2000)

26. The Centre for Housing Policy http://www.york.ac.uk/chp/ Flexible 24 on-site care Purpose designed Residents and their families are “known” to staff “Sanctuary” Supporting independence and choice Quality of life towards the end of life Death as a “social” event

27. The Centre for Housing Policy http://www.york.ac.uk/chp/ End of Life Care in Housing with Care Settings: Challenges Promoting understanding among other professionals of what housing with care can and cannot do Developing partnerships with other service providers: GPs, community nurses, palliative care teams, and others Tension between idea of vibrant, active communities and also being a place of death Engaging residents in a discussion about their preferences and choices Managing tensions between the fit and frail Training and supporting staff

28. The Impact of Social Care Transformation – End of Life Care and Housing Jeremy Porteus, 9 July 2009

29.  NHS review – “High Quality Care for all” – deliver ‘care closer to home’  Ageing Strategy – ‘the age of opportunity’  Lifetime Homes, Lifetime Neighbourhoods  Putting People First  Care and Support Green Paper  End of Life Care Strategy Policy Context

31. Universal services General support and services available to everyone locally, including information and advice Information about all end of life services available and support services for carers Care planning – enabling people to make choices about how they are cared for and where they wish to die Practical and emotional support options Health and social care services accessible from the community to enable people to die at home if they choose

32. Support available to assist people who may need a little more help, their carers and supporters at an early stage to stay independent for as long as possible to:  prevent unnecessary hospital admissions  prevent premature admission to long term care  plan ahead to enable people to die in the place of their choice, with maximum dignity and minimum pain and discomfort Early Intervention & Prevention

33. By ensuring  services available to meet people’s needs and those of their carers and families  access to information and advice  transparency of resources available Choice and Control  individuals have greater choice over how support is provided, including in the final days of life  help to negotiate their support needs  advocates to help people make choices about how they are cared for and where they wish to die

34.  experience friendships and care that can come from families, friends and neighbours  positive interaction  participating in discussions about community life  The End of Life Care strategy emphasises the importance of family, friends and community Social Capital How society works to make sure everyone has the opportunity to be part of a community, such as:

35.  Challenges include increasing numbers of older and disabled people, alongside higher aspirations for the quality of care - current care and support system not sustainable  The reform of care and support ‘will be radical, and it will spell out what we will do in future to ensure that people get high quality care, and that they have choice and control over that care. We will make sure that the system is fair, transparent, simple and affordable for all.’ Phil Hope – Minister of State for Care Services  Housing plays a key role in ensuring real choice and control, including at the end of a person’s life Care and Support Green Paper

36.  Strategic role: maximising housing choices across tenures  Meeting the needs of local populations to ‘stay put’ or ‘move on’  Contributing to the range of service options, including respite care, links with hospices and other NHS/vol sector services  Revitalising neighbourhoods and ensuring health equity  Meeting specific needs through good housing management and design of accommodation Housing as Partners (1)

37. Key areas of the End of Life Care Strategy, in which Housing plays a key role, include:  Raising the profile of end of life care, with staff, residents and families  Strategic commissioning through an integrated approach  Care assessment and planning for the future  Co-ordination of care across all sectors and at all times of the day or night, with rapid access available from people’s own homes if they wish Delivery of high quality services – treating people (including carers) as individuals, and with dignity and respect Housing as Partners (2)

38.  Extra care and Sheltered housing often not understood by NHS (or social care) – including end of life care specialists  Often seen as separate provision  Extra care housing may be well placed in a community, with good access to local health and social care amenities  Can provide an alternative to residential care  Many extra care housing staff may be unsure of how to support and care for a person who is dying Getting extra care housing into the mainstream

39. Cross-Government strategy led by CLG:  Specialist housing for older people, inc rent / sale, and high quality sheltered, retirement, and extra care housing  Housing-related support available to people in general needs housing, e.g. Floating Support, housing options advice, Home Improvement Agencies / Handyperson’s  More accessible general needs properties suitable for a wider range of needs and abilities (Lifetime Homes)  Link to wider health and social care agendas, e.g. intermediate care, day opportunities, telecare, expansion of information and advice Lifetime Homes, Lifetime Neighbourhoods

40. DH Extra Care Housing Fund  Over £225m over 4 years, in partnership with Communities and Local Government and the Homes and Communities Agency, to enable social care and housing partners to enhance housing with care choices for older people  Rowan Village, Stoke, National Housing Awards Category winner, Chartered Institute of Housing 2008  Is Extra Care Housing a home for life?

41.  Role of LSP in developing priorities, drawn from National Indicators, and reflected in Local Area Agreement  Involve housing partners in Joint Strategic Needs Assessment, driving agreement of local priorities, reflected in Sustainable Community Strategy and Housing / Adult Social Care Strategies  Priorities should also be reflected in the Local Development Framework and in ongoing discussions with planners  Role of the Comprehensive Area Assessment in focusing on performance of an area as well as individual organisations  Using sheltered and other specialist housing to provide a valuable community resource for delivery of innovative, integrated end of life care services  Evidence for benefits of integrated approaches to housing, health and care to ensure people have access to personalised end of life services Next Steps

42.  New report on JSNAs and Housing need in the South East  ‘More Choice Greater Voice’ – a toolkit to help enable commissioners to develop accommodation and care strategies for older people  ‘Lifetime Homes, Lifetime Neighbourhoods – A User’s Guide’  New resources offering information about good practice with regard to housing and dementia  Newly updated Factsheet on End of Life Care and Extra Care Housing Useful Resources

43. Thank you http://www.dhcarenetworks.org.uk/housing email: info.housing@dh.gsi.gov.uk http://www.dhcarenetworks.org.uk/housing email: info.housing@dh.gsi.gov.uk

44. The Mental Capacity Act (2005): Implications for Advance Care Planning and Best Interests Decision Making Julie Foster Mental Capacity Implementation Lead Government Office North West 9 July 2009

45. This Presentation will look at………. Why we needed the Act and who it affects The principles of the Act Assessing capacity Best interests The impact of the MCA and the practical challenges and opportunities that it creates

46. Why we needed the Act and who it affects. Mental capacity issues potentially affect everyone Over two million people lack the capacity to make some decisions for themselves, for example: People living with dementia People living with learning disability Older people experiencing frailty

47. Why we needed the Act and who it affects People who are experiencing delirium or confusion People with fluctuating consciousness or capacity People who are under the influence of drugs or alcohol People who are imminently dying and who no longer have full mental capacity People who are unconscious

48. Why we needed the Act and who it affects. Up to 6 million family and unpaid carers, and people involved in health and social care who may provide care or treatment for them Up to 6 million family and unpaid carers, and people involved in health and social care who may provide care or treatment for them People’s autonomy not always respected People’s autonomy not always respected People written off as incapable of making a decision because of diagnosis People written off as incapable of making a decision because of diagnosis No clear legal authority for people who act on behalf of a person lacking mental capacity No clear legal authority for people who act on behalf of a person lacking mental capacity Limited options for people who wanted to plan ahead for a time when they might lack capacity Limited options for people who wanted to plan ahead for a time when they might lack capacity

49. A New Culture of Care Lack of capacity is a determination of last resort Maximising capacity is first priority Requiring new methods of communicating and explaining Person-centred not paternalistic Justify a determination of lack of capacity Legal obligation to act in best interests

50. Principles of the Act Assume a person has capacity unless proved otherwise Assume a person has capacity unless proved otherwise Do not treat people as incapable of making a decision unless you have tried all practicable steps to help them Do not treat people as incapable of making a decision unless you have tried all practicable steps to help them Do not treat someone as incapable of making a decision because their decision may seem unwise Do not treat someone as incapable of making a decision because their decision may seem unwise Do things or take decisions for people without capacity in their best interests Do things or take decisions for people without capacity in their best interests Before doing something to someone or making a decision on their behalf, consider whether you could achieve the outcome in a less restrictive way Before doing something to someone or making a decision on their behalf, consider whether you could achieve the outcome in a less restrictive way

51. Assessing Capacity Act sets out the best practice approach to determining capacity - whether an individual is able, at a particular time of making a particular decision Act sets out the best practice approach to determining capacity - whether an individual is able, at a particular time of making a particular decision Detail on what is involved in assessing capacity is covered in the Code of Practice Detail on what is involved in assessing capacity is covered in the Code of Practice All paid carers are under a duty to have regard to it All paid carers are under a duty to have regard to it If you do not follow it, you must be able to explain why If you do not follow it, you must be able to explain why Unpaid carers should use it for guidance Unpaid carers should use it for guidance

52. Lack of capacity Assessed on a decision by decision basis Diagnostic:evidence of an impairment or disturbance in the functioning of the mind or brain Functional:…by reason of which a person cannot understand, retain, use or weigh relevant information, or is unable to communicate by any means Must not be established merely by reference to age, appearance, condition or behaviour alone

53. Best Interests All decisions must be made in the best interests of the person who lacks capacity It is the key principle that governs all decisions made for people who lack capacity Must consider all relevant circumstances

54. Best Interests cont’d Act doesn’t define best interests but does give a statutory checklist: Must involve the person who lacks capacity Have regard for past and present wishes and feelings Consult with others who are involved in the care of people who lack capacity There can be no discrimination Least restrictive alternative/intervention

55. Advance Care Planning (ACP) ACP is a continuing process of discussion between an individual and their care providers. ACP discussions may include: the individual's concerns their important values or personal goals for care their understanding about their illness and prognosis their preferences for types of care or treatment that may be beneficial in the future and the availability of these The MCA requirement to take account the values wishes and preferences of the person when assessing best interests means that ACP has legal status. The person’s views must be taken into account

56. Advance Care Planning The MCA’s emphasis on ACP is likely to have a significant impact on care - help people get the care they want Examples of tools that may help with ACP include: Gold Standards Framework (GSF) Preferred Priorities for Care (PPC) Liverpool Care Pathway (LCP)

57. Third Party Involvement in Decision-Making 2 new proxies: Lasting Powers of Attorney (appointed by the person to make decisions on their behalf) Court appointed Deputies (appointed to make decisions on their behalf) 1 advocate: Independent Mental Capacity Advocates (advocate, not decision-maker)

58. Lasting Powers of Attorney Now cover personal welfare as well as property – this means a proxy can be appointed to make health and social care decisions It is a formal agency agreement prescribed form; registration not easily or quickly done Can cover different activities, and be given to different people

59. Court Appointed Deputies Completely new creation Court can only appoint if in the persons best interests Must be appointed with as limited scope and for as short a time as necessary Might be a relative or friend, or professional Cannot make decisions about life-sustaining treatment

60. Independent Mental Capacity Advocates IMCAs must be consulted when: A decision is being made about long-term residence or serious medical treatment; and The decision is being made by an NHS or local authority body; and The person has no friends or family to consult IMCAs are NOT decision-makers

61. Advance Decisions to Refuse Treatment N.B. only advance decisions to refuse treatment can be binding To be binding must both valid and applicable “Specific” language required both as to treatment and circumstances – if any circumstances are identified If not binding, must still be considered when assessing best interests If binding, the person has taken responsibility for the decision

62. Advance Decisions Special rules apply to advance decisions refusing life-sustaining treatment: The person must state that the advance decision is to apply to the specified treatment even if his life is at risk as a result The advance decision must be in writing, signed either by the person or by somebody else on his behalf and at his direction, and signed by a witness Clarity of language needed: Instead of “living wills” or “advance directives” use “advance decisions to refuse treatment” or “advance statements”

63. A Quick Summary ASK YOURSELF THE FOLLOWING : What decision has to be made? Does the person have the capacity to make it? What support is required to help him make it? 2 stage test If no capacity: Is there a proxy- LPA or CAD – to make the decision? If it involves treatment, is there an advance decision refusing it? In all cases where the patient doesn’t have capacity and there is no valid and applicable advance decision refusing treatment, ask: What are the persons best interests?

64. New Criminal Offences MCA introduces 2 new criminal offences: Wilful neglect Ill-treatment “Neglect” and “ill-treatment” are not defined. The Courts will have to decide what level of misconduct is so serious that there should be a criminal sanction Both offences carry possible prison sentences

65. Perspectives on good commissioning of extra care Isabel Quinn, National End of Life Care Programme Sarah Vallelly, Housing 21

66. Good commissioning is…. At the heart of social and health care –But: differing processes / frameworks Cornerstone of personalisation – focussing public services on what people want and need

67. Format of session Quick overview of findings specific to commissioning from Housing 21’s recent project: “Getting Personal” – the impact of personalisation on older people’s housing Commissioning for care at end of life; –How can new DH guidance drive up quality and availability of end of life care (EOLC)? –Eligibility for continuing health care Key questions – discussion and feedback

68. Research project: Workshop (Dec 07) to identify key issues First report “Building Choices” and discussion board – July 2008 Consultation with tenants & staff in sheltered and extra care housing Research commissioned in two Individual Budgets Pilot Sites (Oldham and West Sussex) –Interviews with professionals involved in implementing personalisation locally –Focus groups with older people Policy Session at Social Services (ADASS) conference – Oct 08 Final summary report published June 2009 Commissioning workshop held in March. Factsheet to be produced later this year

69. What we found out Many commissioners recognise that moving into extra care is a positive choice for many older people, but not all are aware of its potential as a base for communicating with and providing “cost effective” solutions for fairly large groups of older people Strategic commissioners may want to continue to fund extra care housing as it meets broad outcomes –“ticks all the boxes of personalisation Housing and care providers need to engage and influence commissioners Housing and care providers need to enable commissioners and service providers to hear the voice of older people, residents and people who use care services

70. Commissioning workshop: emerging issues In most localities, older people’s issues are only just starting to be considered Providers don’t always communicate the ‘added value’ of extra care –More should be done to educate people on extra care housing and to communicate its many achievements and contribution to health outcomes and other policy goals Without contracts that support core services, extra care may fail to be viable long term Good quality advice and information is essential to consumers, commissioners and other stakeholders

71. Commissioning for end of life care Overview of New Department of Health Guidance –How can this be used to improve commissioning for end of life care in extra care housing? Eligibility for Continuing Health care –How can we ensure availability of continuing health care in extra care housing? –Who should be considered? –What should be provided? –What is the assessment process? –Benefits of the Fast Track tool

72. Discussion – Key Questions How can we promote the principle of greater choice and control in extra care through commissioning? (This includes dignity and choice at the end of life) How can we use the commissioning process to drive up quality and availability of end of life care which is responsive to individual needs and choices? What specific considerations around end of life care do commissioners of extra care housing need to take into account? How can extra care housing providers and partner organisations influence commissioners?

73. Contact details / further information Isabel Quinn –isabel.quinn@eolc.nhs.uk –Tel: 0191 2596655 –www.endoflifecareforadults.nhs.uk Sarah Vallelly –Sarah.vallelly@housing21.co.uk –Tel: 0370 192 4511 –www.housing21.co.uk

74. Service Improvement Partnership Overview of Housing 21’s partnership work with the National End of Life Care Programme -The story so far Mary Bryce, Head of Extra Care & Sarah Vallelly, Research Manager

75. Service Improvement Partnership About Housing 21 Why we think end of life care is important Overview of service improvement project & partnership with National End of Life Care Programme Aims Achievements to date Outputs and outcomes so far Going forward

76. About Housing 21 Leading national charity which promotes choice and independence for older people through a range of care and housing solutions Our vision is a life of choice for older people Leading developer of extra care housing –Current portfolio: over 1,400 units of extra care. Many more schemes in development. Operate in 150 Local Authority areas. Deliver over 30,000 of home care every week Specialist care and dementia services

77. Why is End of Life Care so important? (Show DVD clip)

78. How the project came about Policy context Previous research evidence –the ‘home for life’ aspiration Housing 21’s own evidence base –demographic trends Feedback from staff Organisations from different sectors BUT –Complementary skills and values –Shared objectives and goals

79. “Is it that time already?” Independent evaluation of service improvement project: January to July 2008 3 extra care schemes took part, 2 in the North East of England and one in East Anglia Aims & objectives –To improve dignity and choice for tenants –To develop an integrated approach to work within the community in accessing supportive care for tenants, their families, carers and staff –To improve skills and knowledge base of staff

80. Key challenges “…An upmarket care home?” – raising awareness and understanding of extra care housing

81. Key challenges (2) Population ageing –Increasing prevalence of disability in extra care –1 in 6 residents have dementia –Greater use of hospital based services Acting on someone’s wishes –Expectations of tenants their families, staff, health professionals Communication across housing and social care –What happens if different organisations manage housing and care?

82. Outcomes of initial 6 month project Reducing stigma and awkwardness - –It became ‘normal’ for extra care staff to talk about and think about issues related to end of life care Supporting staff –Care staff began to recognise signs of deterioration at an early point and felt better able to respond –Improved confidence: Extra care staff knew more about local specialist services and how to access them Improving joint work across housing, health and social care –Opportunities created locally to bring together different stakeholders –Professionals across different sectors began to proactively plan how extra care could support end of life care –Health professionals began to offer additional support to extra care scheme staff

83. Resident views “We think about this more than people realise” “We want to be able to make our own decisions and not make demands on our family” (Couple) “Give me a form and I’ll sign it to say I am not going into hospital!”

84. Key recommendations Clear and concise information about extra care housing is needed for tenants, their families and professionals. Policy makers and service commissioners should ensure that extra care housing is viewed as part of the continuum of living at home in the community Introduce a basic introduction to end of life care issues as part of staff induction in extra care Ensure that tenants and their families have the opportunity to discuss and record their wishes – not a ‘one size fits all’ approach Extra care housing providers should ensure that specialist support can be accessed for people with dementia

85. Next Phase (Oct 08 – Oct 09) Policy sessions at ADASS conferences Skills for Care Funding Resource pack for extra care staff DVD to raise awareness Factsheet on “What is extra care?” for health professionals Rolling out the resource pack to all Housing 21 extra care courts Mechanism for tenants to record wishes if they choose to do so Continue to learn and improve

86. Concluding comments Personalisation agenda means people having more choice and control over where they die and the care and support they get. Joint work across professional and organisational boundaries to achieve best outcome for people. “Some people will never discuss their own end of life – that’s fine. Some will stagger from one health crisis to another – that’s fine. Some people will have everything planned – that’s fine. It just means being skilled enough to take what you know and apply it to each person differently”. (Community matron)

87. Claire Henry Director National End of Life Care Programme

88. Next steps

90. Contact us: information@eolc.nhs.uk 0116 222 5103 www.endoflifecareforadults.nhs.uk