Written evidence submitted by the Department of Health (ELC0087)

Introduction and summary

1. This evidence has been prepared jointly by the Department of Health (the Department), NHS England and Health Education England.

2. Everyone deserves to receive high quality, compassionate care at the end of their lives.  This Government is committed to ensuring that all people at the end of life in England receive the best possible care.  End of life care is acutely personal and we believe that high quality care must involve delivering personalised care with genuine compassion that respects and is tailored to an individual’s priorities and preferences.

3. The delivery of palliative and end of life care takes places across the entire spectrum of the health and social care system.  Whilst palliative and end of life care in England is on the whole of a high standard[1], we recognise that there is more to do to improve care and we are committed to working with our partners to achieve this.  In particular, the Department and NHS England are collaborating closely with partners from across the health and social care system, including voluntary sector organisations, as part of the work of the system-wide End of Life Care Partnership Working Group.

4. The End of Life Care Partnership Working Group is working to drive improvements in the delivery of care, and in 2015 will develop collective ambitions for how palliative and end of life care should be delivered.  This work will build on (and refresh) the Department of Health’s ‘End of Life Care Strategy: Promoting high quality care for adults at the end of their life’[2] published in 2008 and become a new and ambitious five year vision and plan for end of life care beyond 2015.

5. Delivering the scale of change needed at the required pace will require cross system working and collaboration.  This is why development of these shared ambitions is so important, and we look forward to working with our partners on them.

6. We also recognise that more immediate action is needed.  In October 2014, NHS England published its commitment to end of life care for adults and children in Actions for End of Life Care: 2014-16.[3]  That document sets out a number of actions which NHS England is leading or participating in and which, taken together, will represent its contribution to the wider work of the End of Life Partnership Working Group.  Furthermore, the Department has established an independently-led review of choice in end of life care, which will provide advice to Government on how expanding choice can lead to better outcomes and experiences for people at the end of their lives.

7. The evidence set out in this submission to the Health Select Committee follows the themes specified by the Committee in the announcement of its inquiry.

8. We warmly welcome this inquiry and look forward to participating in it.

Definitions of Palliative and End of Life care

End of Life care

1. The General Medical Council’s (GMC) guidance ‘Treatment and care towards the end of life: good practice in decision making’[4] states that “For the purposes of this guidance, patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes patients whose death is imminent (expected within a few hours or days) and those with:

• advanced, progressive, incurable conditions;
• general frailty and co-existing conditions that mean they are expected to die within 12 months;
• existing conditions if they are at risk of dying from a sudden acute crisis in their condition; and,
• life-threatening acute conditions caused by sudden catastrophic events.

2. The Leadership Alliance for the Care of Dying People’s report ‘One Chance to Get it Right’[5] also references this definition.

Palliative care

3. Palliative care is defined by the National Institute for Health and Care Excellence (NICE) in its guidance ‘Improving Supportive and Palliative Care for Adults with Cancer’[6] as “the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.”

Specialist palliative care

4. This has been defined as the “active, total care of patients with progressive, advanced disease and their families. Care is provided by a multi-professional team who have undergone recognised specialist palliative care training. The aim of the care is to provide physical, psychological, social and spiritual support ...”[7]

5. As clinicians and stakeholders working in palliative and end of life care have observed, there are no nationally agreed (and consistently applied) criteria on access to specialist palliative care.  Part of the reason for this is the range and degree of complexity of patient need at the end of life and the skills and confidence of non-specialist practitioners faced with this complexity in primary and secondary care settings [8].  NHS England is actively engaging with partners on service descriptions and specifications to address this issue. 

6. The relationship between specialist palliative care and end of life care is shown in figure 1 below[9].

Figure 1: Relationship between specialist palliative care (SPC) and end of life care

Commissioning and provision of palliative care and end of life care

Commissioning

7. Clinical Commissioning Groups (CCGs) have a statutory responsibility to commission services that meet the needs of their local populations. They must act with a view to improving the quality and efficiency in the provision of such services, including considering how improvements can be achieved through services being provided in a more integrated way, by enabling providers to compete, and by allowing patients a choice.

8. Patients should be offered a choice about where their end of life care is delivered, depending on what services CCGs commission locally and from which providers. These local choice offers might include provision of care at home, in a care home, in a hospice or in hospital.

9. In the ‘NHS Mandate 2014 to 2015’ between the Government and NHS England,[10] improving standards of care and not just treatment, especially for older people and at the end of people’s lives, was identified as a priority area where particular progress is expected to be made.

10. The ‘NICE Quality Standard for End of Life Care’[11] defines best practice within end of life care services, applicable to all settings and services in which care is provided by health and social care staff to all adults approaching the end of life. CCGs are expected to work towards securing services that achieve this Standard.

11. NHS England recognises that it has a clear role in providing leadership and support to CCGs as commissioners of secondary and community services for end of life care services, including specialist palliative care.  NHS England also directly commissions some services which incorporate end of life care, for example, in primary care and for people in secure and detained settings. 

12. This is why, while the system-wide ambitions of the End of Life Care Working Group are being developed, NHS England published Actions for End of Life Care to demonstrate clearly what they are working on and why.  For instance, NHS England recognises that, there is not currently a simple, meaningful set of metrics for end of life care.  Metrics need to be developed and carefully selected to ensure that they can be used safely as levers and incentives. They will need testing and adjustment to guard against unwanted, unintended consequences, but should provide a firm basis on which to commission services in an even more robust and evidence-based manner than at present.

13. Through Actions for End of Life Care, NHS England and its partners are using a simple organising framework to deliver person-centred coordinated care for people with long-term conditions. NHS England and partners have adopted this model (commonly known as the House of Care[12]) as the framework to explain the work on palliative and end of life care because this framework helps to focus attention on the elements that need to be in place to enable high quality person-centred end of life care to be experienced, and it provides a continuum from long term conditions through to end of life care.

Provision

14. The extent to which palliative care services are funded and/or managed by the NHS or voluntary sector varies according to the type of service provision in question. Existing data also suggest that the pattern of service provision can and does vary across England.

15. End of life care is generally provided by two different types of health and social care staff. Generalist staff are those who provide day-to day care to patients and carers in their homes and in hospitals. Specialist staff are those who specialise in palliative care, such as consultants in palliative medicine and clinical nurse specialists in palliative care. These can be NHS or social care staff, specialists working for major charities involved in end of life care including (but not limited to) organisations such as Macmillan, Marie Curie or Sue Ryder, and those working for hospice charities.

16. Care is usually delivered by a combination of one or more of these specialist and generalist staff, often through multidisciplinary teams. The level of care delivered is based on individual patient needs, which can vary greatly due to the wide range of conditions covered in end of life care, at different phases of the person’s illness and also by treatment location.

17. End of life care can take place in a range of settings, depending on the individual’s condition and the availability of local services. People who receive care at the end of their lives die most often in acute hospital settings (48%), but an increasing number of people are dying at home or in their care home (45%) and a smaller number die in hospices (5%)[13].

18. However, these figures do not reflect the fact that many people are treated in a range of locations, and can for example be treated in their own homes until their needs increase and they need more intensive, hospital or hospice-based care. Conversely, many people who are in an acute setting can have their conditions stabilised and can be discharged from a hospital or hospice to receive care in their own homes in their final days. Nor do the small number of deaths in hospices reflect the extensive role that specialist palliative care services play in the care of those who are cared for, and die, in acute settings or in the community.

19. In the UK, a large majority (74%) of specialist palliative care services across all settings are provided by the independent / voluntary sector.  Just over half (52%) of home care services and 63% of outpatient services were independently managed.  However, only 13% of hospital support services were provided by the independent sector (the rest were provided by the NHS).[14]  This picture of service provision has not changed significantly in recent years.

Delivery of Palliative and End of Life care

20. A clear consensus is emerging on what patients and the public should expect in terms of the standards, quality and experience of their care as they approach the end of life, and in the last days to hours of life. 

Standards

NICE Quality Standard for End of Life Care

21. The NICE Quality Standard for End of Life Care provides a comprehensive picture of what high quality end of life care should be like, described in 16 Quality Statements. The Quality Standard should contribute to improving the effectiveness, safety and experience of care for adults approaching the end of life and the experience of their families and carers. A host of key sector organisations have endorsed the NICE Quality Standard.

22. In terms of scope and coverage, the Quality Standard covers all settings and services in which care is provided in health and social care settings to all adults approaching the end of their life. It includes adults who die suddenly or after a very brief illness although not all quality statements are equally applicable in these situations.

23. In 2013, following the independent review of the use of the Liverpool Care Pathway for the Dying Patient and the subsequent Ministerial decision to phase out its use, NICE made appropriate amendments to the Quality Standard to reflect this change. 

Every Moment Counts

24. In addition to the Quality Standard, ‘Every Moment Counts’ was developed by National Voices in 2014 for NHS England as a narrative for person-centred coordinated care. The overarching aim of Every Moment Counts is to focus the whole system on people’s preferences at the end of life.  It expresses the critical outcomes and success factors in end of life care, support and treatment from the perspective of the people who need that care as well as their carers, family members and others who are close to them.  The aim is to ensure everyone involved in delivering end of life care works together confidently, honestly and consistently to help individuals and their family and carers as the end of life approaches.  Whereas the NICE standards are focused on adults, the narrative applies to everyone.

25. As described in Actions for End of Life Care, NHS England is collaborating with partners on a number of pieces of work to ensure that those approaching the end of life (and their carers, families, and those important to them) have sufficient information available to them to be fully engaged and informed about treatment and care decisions.

Quality and experience of care

Place of Death             

26. The evidence consistently shows that most people would prefer to die in their own home (most recently, the VOICES survey reported that 79% of people who expressed a preference, wanted to die at home).[15] Progress has been made in recent years to deliver services that allow people to die in their home or usual place of residence.  In 2004 around 58% of people died in hospital.  Over time this has decreased significantly, with latest available (2013) figures on place of death[16] showing 48% died in hospital.  Figure 2 below illustrates these trends.

Figure 2 – Trends in place of death, England 2004-2013

27. Whilst greater choice on place of death has been an important driver for improving end of life care at home, it is not necessarily the highest priority for everybody. In a 2010 population-based study[17] involving just under 10,000 adults across England, only 34% ranked ‘dying in preferred place’ as their top care-related priority.  Other matters such as ‘having as much information’ as they wanted and ‘choosing who makes decisions’ about their care also ranked highly.

28. The 2012 British Social Attitudes survey[18] also shows that most respondents indicated a preference to die at home.  But the same survey also found that “the preference, expressed by the majority, for a home death would appear to be linked to particular priorities for end of life care. Overall, those who state that they would prefer to die at home feel that the most important aspect of their end of life care would be the presence of family and friends (28%), followed by the need to be pain free (24%) and to retain dignity (24%).”

Wider measures of quality and experience – the Voices-SF Survey

29. The National Survey of Bereaved People (VOICES-SF)[19] is carried out by the Office for National Statistics as a commitment under the End of Life Care Strategy to assess the quality of care delivered to people in the last three months of their lives. NHS England took on the responsibility for commissioning the survey from April 2013.

30. The survey covers end of life care provided: at home; out of hours; by district and community nurse providers; in a care home; by hospital doctors; by hospital nurses; and in a hospice.  The survey also specifically asks about the experience of care during the last two days.

31. The 2013 survey was based on a sample of 49,607 deaths that were reported during the period January to April 2013. The response rate was 46%. The key findings of the latest survey were reported by the ONS to be as follows:

• overall quality of care has not changed significantly between 2011, 2012 and 2013;
• quality of care was rated significantly lower for people who died in a hospital, compared to people dying at home, in a hospice or care home;
• for those dying at home, the quality of coordination of care was rated significantly lower in 2013 compared to 2012;
• the dignity and respect for patients shown by hospital nurses and hospice nurses has increased between 2011 and 2013;
• pain is relieved most effectively in the hospice setting (62%) and least effectively at home (18%); and
• only half of people (50%) who express a preference to die at home, actually die at home.

32. Through Actions for End of Life Care, NHS England will review the VOICES-SF survey to ensure that this continues to measure the experience of the bereaved person in a way that is meaningful and facilitates service improvement.

Equality of Access

33. Available data shows us that some of the most vulnerable members of society receive comparatively worse end of life care.  For instance, the death rate for homeless people is more than three times the rate of aged matched controls in the general population. People with learning difficulties are less likely to be able to access specialist palliative care, and they are more likely to have poorly managed or uncoordinated care.  Further, amongst the black and minority ethnic population there is again a lower uptake of palliative and end of life care services compared to white/majority groups and evidence tells us that outcomes for this group are also poorer.

34. The rise in prevalence of dementia also poses challenges – patients with this condition have complex physical and psychological needs but the care they receive does not always recognise this. 

35. NHS England has committed in Actions for End of Life Care to work to tackle these issues.  Working with partners through the National End of Life Care Intelligence Networks work will be done to identify groups of people, across all age groups, who do not have equitable access to high quality end of life care.  By understanding more about this issue, it will be possible to make evidence-based decisions about what needs to be done to address these inequities. 

36. Alongside this work, the Care Quality Commission (CQC) are currently undertaking a themed review into experience of care at the end of life to understand why certain groups appear to have a less positive experience[20].  This Review will focus on the following priority groups:

• people with a diagnosis other than cancer;
• people aged over 75;
• people with dementia;
• people from Black and Minority Ethnic groups; and
• other groups of people who may have specific needs (such as people with mental health needs, people with learning disabilities, people who identify as lesbian, gay, bisexual  or transgender, people who are homeless, prisoners, travelers and gypsies.

Driving improvement

37. The Department and NHS England also recognise however that as well as developing a national understanding around the drivers for quality and experience there is clear work needed to ensure that health and social care staff can access, understand, and use this data to ensure that local ways of working can be as effective as possible. That is why, for instance, NHS England is working closely with Public Health England to develop a palliative care clinical dataset to provide the foundations for further work on outcomes and indicators.

38. Data and intelligence facilitate a more in-depth understanding of issues such as unwarranted variations in practice; the needs of groups of people whose access to high quality end of life care is inequitable; and, variations in response that are needed to support and respect faith and cultural differences. The CQC thematic work will support this, as will the wider NHS England programme of work set out in Actions for End of Life Care.

39. NHS Improving Quality (NHSIQ), a key partner within the End of Life Partnership Working Group which will develop longer term ambitions for end of life care, is also supporting partners across the system to deliver improvement work in a number of key areas.

EPaCCS (Electronic Palliative Care Coordination Systems)

40. As the end of life approaches, individuals and families must be able to rely on safe, appropriate care that is consistent with their wishes, at any time of day or night and no matter who is providing this care.  Effective co-ordination of care, and sharing of information, is key to delivering this.

41. The 2008 National End of Life Care Strategy recommended locality registers as a way to enable effective communication among professionals.  EPaCCS developed from that model.  Eight pilot sites, testing feasibility and systems for sharing information at locality level, were implemented across the country. EPaCCS are now being implemented in other parts of the country.

42. EPaCCS provide a system for sharing records between health and social care professionals and providers. They allow rapid access across care boundaries, to key information about an individual approaching the end of life, including their expressed preferences for care. NHSIQ make available a number of resources to localities wishing to develop their own EPaCCS to draw upon to support implementation, including[21]:

• a report on CCG implementation of EPaCCS which provides an overview of EPaCCS implementation across England;
• a national information standard (ISB 1580), which defines the core data set and works for either electronic or paper-based systems;
• record keeping guidance, endorsed by several professional organisations representing physicians, nurses, emergency services and allied health professional;
• implementation guidance, to help localities with the process of creating an EPaCCS and putting it into practice;
• a case for change to inform local commissioners;
• guidance on information governance, to protect patient information;
• an independent economic evaluation of EPaCCS to support the case for change; and
• guidance on sharing information across different IT systems (interoperability).

43. A recent evaluation of EPaCCS has demonstrated the potential for significant improvements for patients.  Data from the South West of England covering a population of around 1.9 million people has shown a significant reduction in hospital deaths for people on EPaCCS (below 10%, compared to the England average of 54.5% in 2008-10) as well as annual savings ranging from £47,952 -  £177,900 per 200,000 population.[22]  The evaluation also concludes that if EPaCCS coverage were to rise to 50% of the population in question, the net saving per 200,000 population could be expected to rise to c.£440,000 pa.[23]

44. Over the medium term, the report concludes that “there is sufficient evidence, with appropriate context taken into account, for recurrent savings after four years to be over £100k pa and cumulative net benefit over 4 years of c.£270k for a population of 200,000 people.”

45. All of these actions are helping to support NHS IQ’s ambition that EPaCCS are operational in 70% of local NHS areas in England by April 2015. This ambition is on track to be achieved.

Dying Matters

46. Dying Matters is a broad-based, inclusive national Coalition set up and led by the National Council for Palliative Care (NCPC).  It was initially established to support the implementation of the 2008 National End of Life Care Strategy. NHSIQ, working in Partnership with the NCPC, helps support the ‘Dying Matters’ web portal[24] which provides a host of resources of patients, carers, their families, and NHS staff and organisations to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. Dying Matters is commissioned by NHS England and has a key role to play in promoting national conversations about death and dying.

Transform

47. NHSIQ’s Transform Programme aims to improve the quality of end of life care within acute hospitals across England, enabling more people to be supported to live and die well in their preferred place. 

48. The current focus on this work is on the quality of care provided by acute hospitals, as well as the important role acute hospitals play, as one of many organisations that may provide care for people who are approaching end of life.  It encourages and supports hospital Trusts to develop a strategic approach to reaching their aim to improve the quality of care through:

• involving patients, carers and the public in the planning and delivery of care;
• developing staff skills, competencies and confidence through education and development; and
• quality assurance, measurement and evaluation of service delivery.

Care in the last days and hours of life

49. Following concerns as to its use an independent review of the Liverpool Care Pathway (LCP) was commissioned by the Minister for Care and Support and chaired by Baroness Julia Neuberger in 2013.  Its report - More Care, Less Pathway[25] - acknowledged that where the LCP was used well, it facilitated good care for dying people.  However, the Review also found that there were a number of serious instances where its use was associated with poor experiences of care. The Review also noted that ‘one size fits all’, generic protocols, as the LCP had come to be seen, intended to be applicable for all dying patients in any setting, are the wrong approach.  The Review made 44 recommendations in total, including that the use of the LCP should be phased out within 6-12 months. This recommendation was accepted by the Minister for Care and Support, upon publication of More Care Less Pathway.

50. The Leadership Alliance for the Care of Dying People came together to develop a system-wide response to the Review. The Alliance consisted of the Department of Health, NHS England and other statutory bodies responsible for healthcare commissioning and delivery, health and social care regulation and professional regulation, Royal Colleges, NICE and national charities. It published its response to the LCP Review – One Chance to Get it Right – in June 2014, along with a set of commitments made collectively and by the individual organisations who took part.

51. The Leadership Alliance took the view that it should articulate a vision of what good care of the dying person (i.e. the last days to hours of life) should include, rather than create a prescriptive replacement of the LCP. It set out to engage with professionals and the public about what should be included as key components. The engagement was carried out in a variety of ways to ensure maximum impact, including specific engagement with groups sharing the “protected characteristics” defined in the Equalities Act or groups affected by health inequalities. In total, the Alliance received over 1300 responses from individuals and organisations.

52. Using the outputs of this engagement, the Leadership Alliance set out its vision of what good care in the last days to hours should include in One Chance to Get it Right,[26] in the form of five Priorities for Care of the Dying Person:

The Priorities for Care are that, when it is thought that a person may die within the next few days or hours:

1. This possibility is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.
2. Sensitive communication takes place between staff and the dying person, and those identified as important to them.
3. The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
4. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
5. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.

53. Learning the lessons from the LCP requires a coordinated and collaborative approach.  We need to ensure that people close to the end of their life, and their families and those important to them, can be fully involved and engaged in their treatment, to the extent that the dying person wishes. Joint development and adoption of personalised care plans will be a crucial enabler for this, so that a person’s needs, wants and wishes can be known, understood and acted on.

54. Health and social care staff also need to work closely and in partnership to ensure that the care plans are shared, so that care can be coordinated, avoiding unnecessary difficulties and distress at such an emotional and testing time.   Organisational and supporting processes (data availability, best practice sharing, etc) also need to be in place to support staff to fulfil their obligations, and the commissioning environment needs to be cognisant of the wide range of settings where care may be delivered: in hospitals, in a person’s own home, in hospices and care homes.  Again, the resources that NHSIQ has made available regarding EPaCCS can help in the delivery of more joined-up care.

55. Actions for End of Life Care details specific pieces of work to help deliver these goals and the End of Life Partnership Working Groups’ “ambitions” work will build on these.

Choice in end of life care

56. The Government has a longstanding commitment to widen choice in end of life care. In July 2010 the Department signalled this commitment in the White Paper Equity and excellence: Liberating the NHS. This was followed by a commitment in Liberating the NHS: Greater choice and control to move towards a national choice offer to support people’s preferences about how to have a good death.

57. Patients can expect to be offered a choice about where their end of life care is delivered, although this is not a legal right and depends on what services are available locally and on patients’ individual circumstances. CCGs have a statutory responsibility to commission services that meet the needs of their local populations and, as part of that, to consider the extent to which choice may help to improve services in meeting patients’ needs and preferences. In terms of end of life care, local choice offers might include provision of care at home, in a care home, in a hospice or in hospital.

58. In July 2014, the Minister of State for Care and Support announced a review of choice in end of life care.  This review is being led by a Programme Board chaired by Claire Henry, Chief Executive of the National Council for Palliative Care (NCPC), and consists of leading charities, clinicians, people with experience of end of life care and policy makers[27].

59. The review is considering how the quality and experience of care for adults at the end of life and their families could be improved by expanding choice. It will provide advice to Government in early 2015 covering what choices should be offered, the changes to services required, the major barriers and the cost of these changes.

60. The review recently completed an extensive public consultation exercise, in which people were asked what choices they would like in end of life services and what services need to be in place to achieve this. The consultation exercise received over 1,000 responses from the public and organisations involved in end of life care. These responses have been analysed, and some clear themes have emerged.  For instance, people have expressed a desire for more choice relating not only to their place of care and death, but also relating to other elements of their care such as pain relief and support from relatives and loved ones. Responses relating to services also highlighted the need for good training, coordination of care, community services and care planning. Information from the engagement exercise, plus wider evidence from academic studies and other public consultations, will underpin the Review’s advice to Government.

61. The National Information Board (NIB) recently published “Personalised health and care 2020: a framework for action”.[28]  Within this there is a clear commitment to establish a national digital standard for people at the end of their life, building on the success of ‘Coordinate My Care’ in London, so that care preferences of people approaching end of life are respected.  As part of Actions for End of Life Care, NHS England will be working with partners to ensure that the content of EPaCCS remains up to date, fit for purpose and is in alignment with the work envisaged by the NIB.

Advance decisions

62. An adult with capacity is able to refuse any form of medical treatment. They can also make an advance decision (also commonly known as a living will or an advance directive) setting out what specific treatments they would not want in anticipation of a future loss of capacity.  This is provided for in statute through the Mental Capacity Act 2005, and is subject to specific rules as to its applicability. 

63. Advance decisions validly made in accordance with the law must be followed, and it is crucial that health and social care staff understand that they must respect such decisions.  In practice, patients and those caring for them would discuss and agree treatment options.  Ultimately, the patient has the right to decide not to have treatment, even for reasons that are not agreed with by those treating or looking after them.  Statutorily regulated health and social care professionals who do not respect a valid advance decision could be subject to sanctions by their professional regulator.  For instance, professional guidance from the GMC makes clear that doctors should not put pressure on patients to accept their advice.

64. The issue of the validity of an advance decision only becomes relevant once a patient loses capacity. The Mental Capacity Act Code of Practice makes it clear that it should be assumed that a person had capacity at the time they drew up an advance decision, unless there are grounds for thinking otherwise. 

65. For a person’s choice to be acted upon it must, of course, be known and understood.  This is why systems like EPaCCS are so important as they provide a mechanism for patients to make known their wishes and which health professionals are able to access easily.

Funding

Palliative Care Funding

66. In summer 2010, the then Secretary of State for Health set up the independent Palliative Care Funding Review. The review was asked to make recommendations for a new funding system for palliative care, which would be fair to all providers, encourage more community-based care and support choice by care users of provider and location.

67. The review published its final report in July 2011. It found a lack of clarity on how palliative care is funded with significant difference across the country. The report set out a series of proposals and recommendations designed to create a fair and transparent funding system for palliative care.

68. One of the key recommendations was that a per-patient tariff system be developed similar to the one used in Australia that uses a national needs classification system to build a funding model linked with patient level outcomes. The Australian system of needs classification is based on phase of illness (stable, unstable, deteriorating and dying), age, functional status, problem severity and care setting.

69. In order to be able to develop this system, the report recommended that a number of pilots were set up to gather data. This data collection was started by the Department in 2012 and was transferred to NHS England prior to completion in May 2014. The scope of the collection covered all activity and the associated costs in the delivery of specialist and generalist palliative care provided in acute and community settings.

70. The dataset was analysed with the aim of developing a palliative care currency for adults and children using criteria which best predict patient needs and drive costs. The “currency” needs to be a consistently defined way of grouping healthcare into units that are clinically similar and have broadly similar resource needs. The currency can then be used as a building block of a payment system as well as a common language to discuss commissioning and delivery of specialist palliative care.

71. The result of this analysis is that 28 currency units have been identified for adults and 28 units identified for children. The main factors used to define the units are setting (inpatient acute, hospice or community) and phase of care (stable, unstable, deteriorating and dying). The units are summarised in Figure 3 below:

Figure 3 – Currency Unit Summary

72. Following engagement with clinicians, providers and commissioners this currency is now being tested and refined with the palliative care community and a draft is accessible on the NHS England website[29]. NHS England continues to take account of comments received and a palliative care development currency will be published in February 2015, which will continue to be tested during 2015/16.
     
73. To test whether the currency works when used as a commissioning tool, groups of commissioners and providers who work together are being recruited to begin using the currency as part of their current commissioning process. Their views will be gathered through semi-structured interviews and other qualitative methods. To validate the analysis a further data collection will be carried out to provide data to confirm the results of the analysis. The results of both of these approaches will be used to further develop the currency.
     
74. One particular question that will be considered as part of the testing is whether national prices are appropriate for specialist palliative care. The palliative care sector receives a significant amount of its funding from donations. This could make developing a national price inappropriate.

Hospice grant schemes

75. In addition to the funding received by hospices for the provision of NHS services, the Government has also provided direct funding in the form of either capital or revenue grants. These grants have covered both adult and children’s hospices.

Details of the amounts are in the following tables:

Adult hospices

Children’s hospices

76. Further to these grants, a one-off grant of £19million was made to children’s hospices in 2010.  Since 2007, the Department of Health has also provided funding to individual schemes relating to the work of hospices through the Social Enterprise Investment Fund and the Innovation, Excellence and Strategic Development scheme.

Integration and free social care

77. We want to give people more control over the health and care services they receive, including end of life care. To that end we have been promoting greater personalisation in how services can be accessed. In essence this means building support around an individual and providing them with more choice, control and flexibility in the way they access and receive care and support.

Personal budgets in social care

78. For a number of years across social care, personal budgets have been in place providing this type of independence and control to people and carers, allowing them to make informed choices about how their individual care and support needs are met. We have seen a steady rise in the take-up of these budgets in recent years. Evidence shows that, implemented well, personal budgets can improve outcomes and deliver better value for money.[30],[31],[32],[33]

79. The Care Act places personal budgets into law for the first time, making them mandatory as part of the care and support plan for people with social care needs. From April 2015, everyone in receipt of LA support will be able to benefit from the increased choice and control that personal budgets provide.

Personal health budgets

80. Personal budgets are well established in social care, but are relatively new in the NHS. They are not about new money but rather about using money that would have been spent on a person’s care differently, in ways that work for the individual. They centre on a care plan which is agreed between the individual (or their carer) and the NHS. They may be spent on services routinely commissioned by the NHS and/or on goods and services that are not, depending on the individual’s needs and preferences.

81. People receiving NHS Continuing Healthcare now will have the right to have a personal health budget from October 2014. As personal health budgets are rolled out beyond NHS Continuing Healthcare, patients will have a greater opportunity to choose goods and/or services that suit their needs and preferences. We believe that this will assist patients, their carers and families in being more engaged in decisions about delivery of end of life care.

Integrated Personal Commissioning

82. The Integrated Personal Commissioning Programme (IPC)[34], announced in July 2014, aims to bring together all of an individual’s health and social care funding, giving them more control over how this money is used through person-centred care planning and personal budgets. The ultimate aims of the programme are to:

• allow people with complex needs and their carers to have a better quality of life and achieve the outcomes that are important to them and their families through greater involvement in their care, and being able to design support around their needs and circumstances;
• prevent the types of crises in people’s lives that lead to unplanned hospital and institutional care by keeping them well;
• support self-management as measured by tools such as ‘patient activation’; and
• provide better integration and quality of care, including better user and family experience of care.

83. The programme will run for three years from April 2015 and will give more insight into the potential of personal health budgets and the impact of them on services beyond NHS Continuing Healthcare. This will assist patients, their carers and families in being more engaged in decisions about delivery of end of life care. 

Better Care Fund

84. The Government wants to improve care for the elderly and vulnerable, keeping them at home for longer with the dignity and respect they deserve, which will have the effect of reducing demand on the NHS and freeing up hospitals for people who need them.

85. The £3.8billion Better Care Fund (formerly the Integration Transformation Fund) was announced by the Government in the June 2013 spending round, to ensure a transformation in integrated health and social care. Every Better Care Fund (BCF) plan has set out how the Health and Wellbeing Board area intends to meet six national conditions:

• seven day service across health and social care – to ensure that people can access the care they need when they need it;
• better data sharing, including the use of digital care plans and the NHS number – so that people don’t need to endlessly repeat their story to every professional who cares for them; and so that professionals can spend less time filling out paperwork and more time caring for patients;
• joint assessments – so that services can work together to assess and meet people’s needs holistically;
• appointing an accountable lead professional – who can join up services around individuals, and prevent them from falling through the gaps.
• protecting social care – ensuring people can still access the services they need; and
• agreed impact on the acute care sector – to prevent people reaching crisis point, and to reduce the pressures on A&E departments.

86. Though the national conditions are not aimed specifically at end of life care, they are aimed at supporting and keeping all people at home as long as possible.  The funding  will provide better, more joined up care to help older and vulnerable people stay at home with more dignity and independence. Local areas plans show how they will transform services to cut around 160,000 emergency admissions next year and help people get home from hospital more quickly when they do have to be admitted.

Free social care at the end of life

87. The Care and Support White Paper published in July 2012 stated that:

“The Government thinks that there is much merit in providing free health and social care in a fully integrated service at the end of life. A decision on including free social care at the end of life in the new funding system will be informed by the evaluation of the Palliative Care Funding Pilots and an assessment of the resource implications and overall affordability.”

88. To help assess the evidence, data collection on social care was included in the Palliative Care Funding Pilots.  These pilots closed in March 2014, and officials in the Department of Health are currently analysing the data that these have provided, alongside wider sources of data.

89. The Department anticipates needing further evidence to build a robust case regarding the costs and benefits and are currently working with stakeholders to identify further sources of data that could be used.  In particular we are looking to identify information regarding the use of social care at the end of life by those funding their own care to help better understand the potential costs and benefits of free social care at the end of life. 

90. Key to understanding the potential for benefits, and any potential savings that may be attributed to reducing hospital admissions, will be an understanding of the existing community capacity, particularly to provide both clinical end of life care and social care services.

Workforce

91. Staff delivering any aspect of end of life care have a responsibility to ensure that they have the necessary skills and competences to enable them to deliver high quality end of life care. If they are registered with an appropriate professional body, they should also ensure that they can demonstrate this for the purposes of revalidation/recertification.

92. A very large number of health and social care staff, working in the community, in hospitals, care homes, hospices and other places, have at least some role in the delivery of care to people at the end of their life or their families and carers. Doctors, nurses, allied health professionals, pharmacists, social care staff, chaplains, ambulance staff, porters, mortuary staff and others, including those within the voluntary sector, all have essential roles. Each staff group must have the necessary knowledge, skills and attitudes to fulfil their roles effectively.

93. Health Education England (HEE) is developing a community skills approach to improve capacity by enabling a broader conversation about end of life and to ensure that all care workers can engage with end of life care support meaningfully.

94. As part of its work to deliver against its Mandate from Government, HEE has been embedding End of Life Care priorities across the healthcare workforce and taking forward actions identified by the Leadership Alliance response to the Review of the Liverpool Care Pathway.

95. HEE’s current work to deliver these commitments includes:

• Promoting and publicising the glossary terms from One Chance to Get it Right: It is important that all training of healthcare staff includes awareness of the appropriate terminology for end of life care. HEE continues to promote the One Chance to Get it Right glossary terms through its 13 local education training boards (LETBs) and has commissioned NHS Employers to spread key messages via its websites and other communication channels.
• Improving curriculum: E-Learning for Health (e-LfH) is an HEE programme in partnership with the NHS and Professional Bodies providing for the training of the NHS workforce across the UK. Through this programme, HEE is working with NICE to include nutrition and hydration in education and training curricula by creating content for the Foundation e-Learning Project. These sessions will be for Foundation Doctors to learn about the new NICE guideline on the principles and management of IV fluid therapy.
• Supporting shared decision-making: HEE has developed an e-learning module to support shared decision-making and has made this available to the healthcare workforce through E-Learning for Health.
• Working with stakeholders to develop and influence education and training as appropriate: Locally, the HEE and LETB annual agreement ensures LETBs implement and evaluate workforce plans to secure outcome improvements on end of life care. LETBs have continued to build on the work undertaken during 2010-13 to promote high quality care for all at the end of life through specific projects. Central workforce development budget has been allocated for this purpose. HEE plans to undertake a survey of activities at local level and collate evidence of good practice on implementing end of life care across education and training frameworks.
• Developing appropriate workforce planning to support the commissioning and delivery of good quality end of life care provision: HEE is actively engaged in developing its workforce plan for the whole healthcare workforce in England which will be published at the end of 2014. This will include those professions critical for the delivery of high quality end of life care provision.  HEE's workforce plan is determined through an assessment of future need by local NHS employers.  Significant demographic trends over time, including those that are relevant to end of life care services and workforce, such as increasing numbers of people dying annually, have been reflected in HEE’s planning process. 
• Developing the End of Life Care for All e-learning project (e-ECLA) and other training materials for end of life care: The e-ELCA programme was commissioned by the Department for Health and delivered by e-LfH in partnership with partnership with the Association for Palliative Medicine of Great Britain and Ireland.  It has been reviewed to remove reference to the LCP. It is now going through a complete content review to ensure it is current. This will be completed by March 2015.
• Working with organisations to improve care in the last days and hours of life especially on education and training: HEE has established a small group including representation from HEE Central and its LETBs, the Royal College of Physicians and the Royal College of General Practitioners to progress joint initiatives in support of workforce planning and education and training to support the Priorities for Care. HEE is also working with NICE and the Association of Palliative Medicine in developing e-learning tools to support high quality end of life care.

96. In March of this year the evaluation of the Yorkshire and the Humber end of life care development programme for care homes was published.  This was a major piece of work resourced by Health Education Yorkshire and the Humber in 2012/13 to train and support 500 managers and 500 champions in residential care home settings across the area in end of life care.

97. HEE is also working with the Social Care Institute for End of Life, which has developed a care hub to share knowledge, provide advice and disseminate guidance for those working in social care in order to improve the quality of care they give to people who are dying in care homes, nursing homes and at home. Better awareness and understanding by care staff will also benefit the family and friends of people who are dying; evidence identifies bereavement outcomes are improved when individuals and families who have lost a loved one are well supported.

Support for Carers

98. A number of recent developments in the area of support for carers will help people at the end of their lives, and provide much needed support to the people close to them who they may rely on for care and support. Many carers do not see themselves as such. It takes carers an average of two years to acknowledge their role as a carer and it can be difficult for carers to see their caring role as separate from the relationship they have with the person for whom they care, whether that relationship is as a parent, a son or daughter, or a friend. Many carers juggle their caring responsibilities with work, study and other family commitments. Some, in particular younger carers, are not known to be carers.

99. The Care Act received Royal Assent on 15 May 2014, representing the most significant reform of the legislation for care and support in over 60 years, putting people and their carers in control of their care and support. The Act places carers on the same footing as those they support.  The requirement that a carer must be providing ‘substantial care on a regular basis,’ is removed.  Rights to carers’ assessments are extended and based on the appearance of a need for support, the impact of caring on the carer, and the outcomes they wish to achieve.  For the first time, local authorities have a duty to meet carers’ eligible needs for support.

100.      The Department has also made an additional £400million available to the NHS between 2011 and 2015 to provide carers with breaks from their caring responsibilities to sustain them in their caring role. Guidance issued to Health and Wellbeing Boards, Clinical Commissioning Groups and local authorities as an annex to the NHS England ‘Planning Guidance’[35] makes clear that the £130 million to fund carers’ breaks for 2015/16 can be accessed through the Better Care Fund.

101.      The Government also recently published an updated Action Plan to accompany its Carers Strategy.  This sets out in full its broader commitments to carers over the next two years.[36]

102.      In May 2014, NHS England published its Commitment to Carers, to give them the recognition and support they need to provide invaluable care for loved ones. There are 37 commitments spread across eight key priorities which include raising the profile of carers, education and training, person-centred coordinated care and primary care.  The commitments have been developed in partnership with carers, patients, partner organisations and care professionals over the past few months.

103.      In December 2014, NHS England also published ‘Principles and Resources to Support and Adult Carers’ to assist commissioners in delivering the care and support that carers need.[37]

104.      NHS England has a number of responsibilities towards carers that have been outlined in the Department of Health’s mandate to NHS England, the NHS Outcomes Framework and within NHS England’s Business Plan and Planning Guidance. One notable objective in the mandate and business plan is to ensure that the NHS becomes dramatically better at involving patients and their carers, empowering them to manage and make decisions about their own care and treatment. In addition, the NHS Outcomes Framework (2014/15) includes an indicator that seeks to measure the health related quality of life for carers.

105.      Together, these initiatives are likely to make a real difference to those caring for people approaching the end of their lives.  Actions for End of Life Care includes work to focus attention on specific groups of carers who are particularly vulnerable, for instance carers who are particularly young or old, or socially isolated.

Research

106.      Research commissioning in the NHS is a specialised function led by the Department of Health research and development directorate. Following the Health and Social Care Act 2012, Ministers agreed that the research and development directorate would commission and manage research needed by the Department and its arm’s length bodies, including NHS England.

107.      The Department’s National Institute for Health Research (NIHR) funds and/or collaborates in a wide range of initiatives and research relating to palliative and end of life care, committing several millions of pounds of funding.[38]

108.      NHS England works with the Department and partners such as funding programmes, research networks, research units, charities, industry and other stakeholders, to ensure its research priorities are recognised, commissioned and delivered.

109.      In its role as a commissioner of services, and in providing clinical leadership, NHS England is committed to improving care for people at the end of their life based on evidence of good practice. NHS England is committed to an evidence-based culture and the robust use of evidence in its decision-making and commissioning of services. It also plays a key role in ensuring the adoption of research and innovation and implementation of findings in clinical care. The development of Academic Health Science Networks (AHSNs) is a mechanism for delivery of this responsibility. The 15 AHSNs present an opportunity to align clinical research, innovation, information, training and education. Their objective is to achieve rapid spread of evidence-based improvement and improve patient outcomes by translating innovation and research into practice.

110.      NHS England will continue to support the NIHR in its commitment to developing the evidence base for specific treatments and care by supporting opportunities for patient and carer participation in research studies and by identifying gaps in research and research priorities.

111.      From 2014, the NHS Standard Contract has reflected the need for clinical effectiveness and included requirements in the Contract of Good Practice that providers’ practices and procedures should reflect up to date published evidence. There is also a requirement for providers to continually review and evaluate their services and implement any lessons learned.

17 December 2014