Living and Dying Well: Building on Progress

6 Additional areas of development

53 In addition to the work carried out by the short-life working groups above, key developments have occurred in additional areas of key relevance to the implementation of Living and Dying Well¹. These include the electronic Palliative Care Summary, resuscitation, standards of palliative care in care homes, the provision of palliative care for children and young people, bereavement care, and the relationship between NHS Boards and independent adult hospices in the provision of specialist palliative care services.

Electronic Palliative Care Summary ( ePCS)

54 The electronic Palliative Care Summary ( ePCS), rolled out Board-wide in NHS Lothian in September 2009 following a series of successful pilots using different GP systems in NHS Lothian, NHS Grampian and NHS Ayrshire and Arran, is now subject to national rollout on a Board by Board basis. The ePCS improves communication between patients, carers and professionals at all stages of the patient journey by allowing data to be sent automatically and on a daily basis from GP systems to Out of Hours ( OOH) services. In particular it allows practices to:

• replace the fax form used to send patient information to Out of Hours services
• clearly see essential information on patients with palliative care needs
• view or print lists of patients on the practice Palliative Care Register
• set review dates to ensure regular review of patients.

55 It helps provide the opportunity to develop Anticipatory Care Plans which may include:

• medical diagnoses as agreed between GP and patient
• patient and carer understanding of diagnosis and prognosis
• patient wishes on preferred place of care and DNACPR
• information on medication and equipment left in the patient's home 'just in case'.

56 Development of the ePCS and its practical implementation has been supported by the Scottish Government's National Clinical Lead Palliative Care eHealth and the Palliative Care eHealth Advisory Group, as well as by NHS Board IT Leads. This support will continue through the sometimes complex, practical technical implications of local roll out through which we expect a considerable increase in uptake and usage over the coming months. The governance for implementation will be monitored through the Scottish Government eHealth Group and progress will be reported through the Living and Dying Well¹ National Advisory Group.

Action 13

NHS Boards, supported by the National Clinical Lead Palliative Care eHealth, will complete the roll out of the electronic palliative care Summary within locally agreed timescales.

Do Not Attempt Cardiopulmonary Resuscitation ( DNACPR) Adult Policy

57 The NHSScotland Do Not Attempt Cardiopulmonary Resuscitation ( DNACPR) Integrated Adult Policy (see Appendix 13) was launched in May 2010, with a joint Chief Medical and Chief Nursing Officer letter (see Appendix 14). This has become a crucial part of addressing the increasing movement of patients and staff between different care settings across Scotland. The policy has been developed as part of the implementation of Living and Dying Well¹ following both the recommendations regarding consistent DNAR policy in the 2008 Audit Scotland Review of Palliative Care Services¹⁶ and in the End of Life Care Plan¹⁷ published jointly by the Scottish Ambulance Service and the Scottish Partnership for Palliative Care in the same year, and the subsequent emphasis by the Scottish Parliament Public Audit Committee on the need for a single consistent Scotland-wide policy.

58 The development of this national policy has been led by the Scottish Government's National eHealth Clinical Lead, with additional clinical expertise from NHS Lothian, and brought to fruition through the extensive involvement of NHS Board Resuscitation Leads and a DNACPR Steering Group established for the purpose. The policy, based on the integrated DNAR policy of NHS Lothian, reflects the current evidence base and UK best practice guidance on decisions relating to Cardiopulmonary Resuscitation such as the 2007 revised Joint Statement¹⁸ produced by the British Medical Association, Royal College of Nursing and Resuscitation Council ( UK) and the General Medical Council's 2010 guidance Treatment and care towards the end of life: good practice in decision making¹². It aims to support patients in achieving personal goals for their end of life care in any care setting, but its use does not preclude other active interventions or care. It does not apply to children, for whom a separate and appropriate policy is currently being developed. Implementation of the DNACPR Integrated Adult Policy has been supported by NES through the production of a training resource DVD for healthcare professionals and the provision of training the trainer sessions across Scotland by the Scottish Government.

Action 14

NHS Quality Improvement Scotland with support from NHS Education Scotland and the Scottish Partnership for Palliative Care will work with NHS Boards and key stakeholders to support the implementation of the NHSScotland Do Not Attempt Cardiopulmonary Resuscitation ( DNACPR) Integrated Adult Policy (see Appendix 13). The progress of implementation will be reported through the Living and Dying Well¹ National Advisory Group.

Children and Young Person Resuscitation Policy

59 In conjunction with the adult policy, the SCYPPEx group has developed a resuscitation policy for Children and Young People, titled Children and Young People Acute Deterioration Management (see Appendix 15). This policy and related materials, has recently been published and has been developed with the wide support of paediatric services within Scotland. It will mainly be used within Children's Services Departments to support the management of acute deterioration in children and young people.

Action 15

NHS Quality Improvement Scotland, NHS Education for Scotland and the Scottish Partnership for Palliative Care will work with NHS Boards to support the implementation of the Resuscitation Planning Policy for Children and Young People.

Care Homes

60 With a population living longer and suffering from a growing range of long-term and life-limiting conditions, care homes in Scotland are playing an increasingly important role in the provision of palliative and end of life care. Considerable progress has been made in recent years to raise standards of care, in particular through Making good care better: National practice statements for general palliative care in adult care homes in Scotland¹⁹, published by the Scottish Partnership for Palliative Care and the then Scottish Executive in May 2006 and used as an inspection focus by the Care Commission between March 2007 and March 2008. The Care Commission's subsequent report, Better Care Every Step of the Way²⁰, highlights both the good practice achieved and what has still to be done to achieve a uniformly high standard of palliative and end of life care in care homes throughout Scotland. The report makes a series of recommendations for bringing this about.

61 Living and Dying Well¹ also highlighted the increasing importance of care homes in meeting the palliative and end of life care needs of older people and tasked the National Clinical Lead for Palliative and End of Life Care with initiating discussions leading to liaison between the Scottish Government and the Care Commission regarding appropriate quality mechanisms in this area. A meeting of interested stakeholders, led by Scottish Care, the umbrella body of the independent care sector in Scotland, took place in October 2009 leading to the establishment of a new national Palliative Care in Care Homes Steering Group. This group includes representation from the Scottish Government, NHS, care home providers in the private, voluntary and public sectors, NHS Education for Scotland, COSLA, Association of Directors of Social Work, the Care Commission and the Scottish Partnership for Palliative Care. It aims:

" to develop the capacity of care homes to deliver good quality palliative and end of life care, consistent with Scottish Government policies, regulatory requirements and good practice guidance, thereby ensuring that people can make a positive choice to remain in their care home unless there is a need to access specialist care in another environment." (see Appendix 16)

62 In a significant linking of cross-sector policy initiatives, this Steering Group will support the implementation of the recommendations in Better Care Every Step of the Way²⁰, work which will inform the potential review of the National Care Standards proposed in Living and Dying Well¹. A national stakeholder conference for care home providers on sharing good practice took place in the autumn of 2010. To further support a cohesive approach to the provision of palliative and end of life care in care homes, the Palliative Care in Care Homes Steering Group will in future be represented on the Living and Dying Well¹ National Advisory Group. To address the need for consistent and accessible opportunities for education and training in care homes, NHS Education for Scotland has made its training materials available to all care home staff.

Action 16

The Palliative Care in Care Homes Steering Group should continue, through the agreed objectives to implement the work plan to develop the capacity of care homes to deliver good quality palliative and end of life care, consistent with Scottish Government policies, regulatory requirements and good practice guidance.

Action 17

The Palliative Care in Care Homes Steering Group should work with NHS Boards with the support of NHS Quality Improvement Scotland, NHS Education for Scotland and the Scottish Partnership for Palliative Care to ensure a national approach to quality assurance and quality improvement in palliative and end of life care in care homes, specifically:

• NHS Education for Scotland should continue to make its education and training resources available to care home staff whenever possible.
• At an appropriate time the Scottish Government will liaise with the Scottish Commission for the Regulation of Care (Care Commission) regarding possible revision of the National Care Standards as they relate to the provision of palliative and end of life care in care homes.

Children and Young People

63 Living and Dying Well¹ Short Life Working Group 6, in making recommendations for meeting the palliative and end of life care needs of adolescents and young people, noted that many of its recommendations were also applicable to children. A Scottish Children's and Young People's Palliative Care Executive ( SCYPPEx) has now been formed to address the specific palliative care needs of children and young people. This group brings together formal and informal networks concerned with the palliative care of children and young people across Scotland in a single unified voice to provide:

• clinical leadership to influence and develop the delivery of palliative care services to children and young people with all types of long term and life limiting illness and their families across Scotland and
• strategic leadership to influence the wider health, social care and education policy agendas to achieve the best outcomes for children and young people with palliative care needs and their families in Scotland.

64 SCYPPEx has suggested extending the recommendations of SLWG 6 to embrace the needs of children and young people (see Appendix 17), and has a number of suggestions regarding the implementation of Living and Dying Well¹ as it applies to the specific palliative and end of life care needs of children and young people and their families. SCYPPEx is represented on the Living and Dying Well¹ National Advisory Group, and has been central to the development of a national resuscitation planning policy for children and young adults.

Action 18

The Scottish Children's and Young People's Palliative Care Executive ( SCYPPEx) should work with NHS Boards, NHS Quality Improvement Scotland, NHS Education for Scotland and the Scottish Partnership for Palliative Care to support a national approach to quality assurance and quality improvement in palliative and end of life care for children and young people.

Bereavement

65 The Audit Scotland Review of Palliative Care Services¹⁶ in August 2008 noted the inconsistency of bereavement support across Scotland. Living and Dying Well¹ Short Life Working Group 7 also recognised the importance of bereavement care when it included within its remit and examination of attitudes to death and dying the issues of bereavement and loss.

66 In a speech in September 2008, the Minister for Public Health and Sport referred to the long overdue introduction of bereavement guidance in Scotland. That guidance is now in draft form and available for consultation in the discussion document Shaping Bereavement Care A Framework for Action for Bereavement Care in NHSScotland (see Appendix 18) . This document builds on work commissioned in 2005 by the then Scottish Executive, NHSQIS and NES and carried out by Robert Gordon University, and is the culmination of an extensive process of debate and collaboration across professions and sectors. Shaping Bereavement Care is addressed to NHS Boards in Scotland to guide them in the development of good quality bereavement care. Its key messages include the following:

• there is a need to recognise that good care of the dying, the person who has died and of relatives and carers at the time of death leads to better outcomes in grief for those who are bereaved
• quality bereavement care starts, where possible, before death and certainly at the time of death
• quality bereavement care, at least in the period around death, is the responsibility of the health services
• all healthcare staff require education and training in grief and loss at a level appropriate to their degree of involvement with the bereaved
• health boards have a responsibility for the care and support of staff working with the dying and bereaved
• the delivery of quality bereavement care within health boards requires to be coordinated
• healthcare services should work in partnership with other stakeholders in the planning and delivery of care for the bereaved.

67 Shaping Bereavement Care contains recommendations for NHS Boards, as well as for NHSQIS and NES and advocates a coordinated approach both within NHS Boards and nationally. In support of this, it is hoped to establish a national networking hub for those working in the field of grief and bereavement. Shaping Bereavement Care also seeks to interface with Living and Dying Well¹ and supports the need highlighted by SLWG 7 for greater public acceptance of death and dying as part of the ordinary cycle of life and of bereavement as a normal human experience.

Action 19

The Living and Dying Well¹ National Advisory Group should be mindful of the recommendations in the final version of Shaping Bereavement Care A Framework for Action for Bereavement Care in NHSScotland (see Appendix 18) and should work in collaboration with any Shaping Bereavement Care implementation group to maximise the achievement of a cohesive national approach to all aspects of palliative and end of life care.

Action 20

NHS Boards should ensure that implementation of Living and Dying Well¹ and Living and Dying Well: Building on Progress and of Shaping Bereavement Care A Framework for Action for Bereavement Care in NHSScotland are closely aligned within Board areas.

Action 21

The coalition to be established by the Scottish Partnership for Palliative Care to take forward the work recommended by SLWG 7 should include representation relating to the implementation of Shaping Bereavement Care A Framework for Action for Bereavement Care in NHSScotland.

Funding Arrangements Between NHS Boards and Voluntary Hospices

68 Historically, specialist palliative care services have in some areas been provided through independent adult hospices partly funded by their NHS Boards. Scottish Executive HDL (2003) 18 set out a commitment to build a partnership between NHS Boards and adult voluntary hospices that would ensure 50% funding of agreed annual running costs. However, the Audit Scotland 2008 Review of Palliative Care Services¹⁶ noted a lack of consistency in these arrangements, and recommended that Boards put in place commissioning and monitoring arrangements which would ensure that value for money was achieved. In examining the Audit Scotland report, The Public Audit Committee of the Scottish Parliament recommended robust commissioning arrangements in the delivery of palliative care services to ensure value for money, and also recommended that the Scottish Government should supplement existing guidance on what should be included in NHS Board funding allocations to voluntary sector bodies.

69 The Scottish Government accepted these recommendations and a short life working group was established with representation from the Scottish Hospices Forum and the six NHS Boards with voluntary hospices in their areas. This group, chaired by one of the co-chairs of the Living and Dying Well¹ National Advisory Group, adopted a collaborative approach and has explored approaches, within the context of today's challenging financial environment and increasing expertise in quality assurance issues, to building a viable and enduring partnership and commissioning framework between NHS Boards and voluntary hospices in Scotland.

70 The group has now submitted its final report and recommendations, A Partnership for Better Palliative and End of Life Care: Creating a New Relationship between Independent Adult Hospices and NHS Boards in Scotland (see Appendix 19) to the Scottish Government. The report will be considered and revised guidance issued in due course.

Action 22

The Scottish Partnership for Palliative Care, with key stakeholders, including representatives from NHS Boards and voluntary hospices, should facilitate and lead the establishment of a performance forum to build a collection of measures linked to the six dimensions of quality (Recommendation 5.5 of the report).

Action 23

The Scottish Government will consider the working group's final report and recommendations and will issue revised guidance to NHS Boards in due course.