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04 CHAPTER FOUR SHIFTING THE BALANCE OF CARE

01 In this chapter we outline our approach to developing systems of local care which will be needed to deal with the changing health profile of the population of Scotland. This will primarily, although not exclusively, involve an ageing population and the growing prevalence of long-term conditions. Patients and the general public told us at our open meetings that they wanted services delivered locally wherever possible; they were willing to travel for highly specialised treatment but wanted as many "core" services as possible close to home.

02 This chapter is based on the work of three of the National Framework's Action Teams: Care of Older People; Long Term Conditions; and Care in Local Settings.

03 The direction of travel for health care in Scotland has been clearly signposted for some time. In Designed to Care published by The Scottish Office in 1997, the Government's vision was described as follows:

"...a National Health Service for the people of Scotland that offers them the treatment they need, where they want it, and when: a modern "designed" health service putting patients first. We want a seamless health service centred on primary care, designed to ensure that patients receive care quickly and with certainty."

04 The White 'Paper Partnership for Care' in 2003 sought to develop the vision by saying:

"A wider range of services will be provided in community settings."

05 The analysis of the drivers for change suggests that this is the right approach but that the pace of transition to seamless health care centred on primary care needs to increase.

Background

06 It is worth briefly restating the facts. We know that Scotland's population is ageing. Within twenty years close to one quarter of us will be aged 65 and over. We know that as people get older, they tend to have different health needs. The box below provides a summary.

07 At a UK level, patients with long-term conditions account for 80% of all GP consultations (although we recognise that consultations by these patients may not always be about their long term conditions). It has been estimated that, of the eleven leading causes of hospital bed use in the UK, eight are due to conditions that with strengthened community care would lead to a fall in bed use. (Department of Health, 2004).

08 In the 2001/2002 Scottish Household Survey, 31% of all households in Scotland contained at least one person with a long-standing limiting illness, health problem or disability. As can be seen from Table 4.1, the probability of emergency admission to hospital is much increased by having to manage a long term condition. Using data linked from the 1998 Scottish Health Survey, we can see that the chance of being admitted as an emergency inpatient in Scotland is three times greater among those reporting a long-standing illness. The same data shows that 70% of emergency admissions are from people with a long-standing illness and that figure rises to 85% amongst the older population. This demonstrates a clear link between chronic disease and hospitalisation. Better management in primary care could deliver significant benefits to the patient and contribute to reducing pressure on the hospital sector.

Table 4.1
Proportion of respondents (per 1000) experiencing emergency admission

Source: ISD Scotland

09 The major locus of pressure on the NHS over the last twenty years has been the rise in emergency admissions especially among older people. The growing burden of ill-health associated with an ageing population only explains a proportion of this increase in emergency admissions.

10 Perhaps the most fundamental strand of explanation for the increase lies in the mismatch between the needs of the population for proactive, integrated and preventive care for chronic conditions and a healthcare system where the balance of resources is aimed at specialised, episodic care for acute conditions.

11 The foregoing analysis suggests that there are a number of future challenges and pressures on the system that require an increased focus on the delivery of local care. We are able to highlight three dominant and related issues in the Scottish population's need for health care. The first is the growth in the number of older people and in particular the number of relatively frail older people living at home. The second is the emergence of chronic disease as the main challenge facing the health service. The third is the need to tackle avoidable emergency hospital admissions.

12 It is important to be clear what we mean by local care. We see it as the delivery of safe, effective and sustainable services as close to the patient's home as possible. In some cases, that might be in the home; in others it might be in the GP surgery, in the local pharmacy or in the local hospital. The physical location of the care package has been less important to us than the principle of delivering care as locally as possible and delivering care that meets the patient's needs in a way that supports the patient's well-being and personal circumstances.

What can be done locally?

13 In recognition of the "three dominant developments" referred to in paragraph 11 above, the National Framework looked at three related issues; each addressed by an Action Team:

• Care of Older People adopting the following "governing principles";
• • much of the current pressure on health and social care services relates to the care of
    older people
  • historically based patterns of provision have adapted only slowly to changing need, and are now unbalanced in relation to their main task
  • with more and more of the health and social care task relating to long-term conditions, recurrent ill-health and dependency in older people, a change of focus from episodic to sustained co-ordinated care is overdue
  • a proactive and supportive approach to care of frailer older people, based on 'whole-system' redesign of health and social care is required
  • substantial resource shift is needed.
• Long Term Conditions considering the potential growth in the incidence of chronic diseases and proposals for NHS Scotland for models of care that are:
• • patient centred
  • integrated and co-ordinated by Community Health Partnerships
  • systematic.
• Care in Local Settings considering the scope for change in four strands:
• • supporting people at home
  • preventing avoidable hospital admission
  • identifying opportunities for more local diagnosis and treatment
  • enabling appropriate discharge and rehabilitation.

The Care in Local Settings Group focused on three areas to illustrate the opportunities that might arise to deliver more care in local settings:

14 The work of the three Action Teams was complementary and involved a range of clinicians and managers from across the service as well as input from patients, carers and representatives from the voluntary sector. Their full reports can be found at the National Framework website www.show.scot.nhs.uk/sehd/nationalframework .

Care of Older People

15 Care of older people has recently been recognised as 'the central responsibility of NHS Scotland, with good mainstream care as a goal of current and future efforts in the health service reform' (Chief Medical Officer, 2002). However, the pace of reform has been slow. Current challenges are not being met. The scope and scale of reform to ensure adequate delivery of the 'central responsibility of NHS Scotland' in 2024 remains daunting.

16 As described in Chapter 3, the health care needs and patterns of health care delivery for Scotland's ageing population in 2024 will be determined by a range of factors. Demography is the least uncertain. The health of older people, their attitudes and expectations, technological advance, patterns of social change, the research and development agenda, health service organisation, and infrastructure will all - with varying degrees of uncertainty - contribute.

17 As we have seen, between 2001 and 2031 the proportion of the population aged 65 and over in Scotland will increase from 15.9% to 26.6%; the proportion aged 80 and over (the age group with the highest level of health and social care need) will increase from 3.8% to 8.2%. To ensure an adequate quality of care in twenty years' time and to enable NHS Scotland to avoid a state of perpetual crisis, a radical review and restructuring of the health and social care of older people is needed.

Figure 4.1
Scotland's older population by 5 year age group. Trends (1911 to 2002) and GAD projections (2003 to 2042)
(data from 2028 is linear interpolation between selected years: 2031, 2036, 2041)

Source GRO Scotland/Government Actuary's Department

18 Most of the pressures affecting the acute sector of the NHS (rising emergency admissions, bed crises, high levels of delayed discharge and long waiting times) relate primarily to the care of older people. However a case can be made that the acute sector dominance that has characterised the NHS throughout its history has not served older people well, and has served the frailest of them least well.

19 Previously fit older people with a single diagnosis may of course be served quite well by the current pattern of provision. For patients with co-morbidity, long term illness, frailty or confusion however, serious difficulties can arise such as: loss of mobility, increasing confusion, prolonged length of stay, prolonged loss of function, permanent loss of function and even the loss of their home.

20 Frailer older people - especially those with cognitive and/or sensory impairments - are at most risk on the boundaries between the acute sector, primary care and social care provision. Although current organisational reforms (the introduction of Local Health Care Co-operatives now to be succeeded by Community Health Partnerships) and innovative multidisciplinary interface services (such as Rapid Response Teams and Early Supported Discharge) have mitigated some of the problems, there are continuing concerns about the vulnerability of frail older people in a complex system of care.

21 As was outlined in Chapter 3, an unexplained and problematical aspect of acute sector dominance is the rise in emergency admissions of older people (Figure 4.2) in excess of demographic change and in the absence of broadly measurable increased morbidity.

Figure 4.2
Numbers of emergency admissions by age group. 1981-2002.

Source: ISD Scotland

22 Progress towards tackling this issue will depend on explicit recognition of the specific health care needs of older people and developments throughout health and social care designed to meet these needs, including:

• better early recognition of dependency and need (case finding)
• flexible and responsive community provision to facilitate early intervention and support the frail elderly at home (case management)
• ready access to diagnostic technology and expertise
• improved 'interface' services to minimise the adverse consequences of contact with unscheduled services such as A&E departments and Assessment Areas
• awareness and response throughout the acute sector to the vulnerability of the frail elderly, with adequate functional assessment and readily available and effective rehabilitation services - both inpatient and community - to meet their needs
  ( NHSQIS, Standards for Older People in Acute Care, 2002).

23 In addition, the full impact of recent changes in out of hours cover on the care of the frail elderly at home has yet to be assessed. The quality of out of hours care will be crucial to the care of older people over the next twenty years - in controlling avoidable unscheduled care, in optimising end of life care and perhaps even contributing to case finding.

24 Organisational structures and barriers are not the whole story in accounting for the often fragmented nature of care of older people. Changing organisational structures is not a panacea.

25 However, our conclusion is that the current organisation and infrastructure of both health and social care - with health still split into acute and primary sectors and social care managed as a traditionally separate entity - is far from ideal for the necessary development of the whole-systems approach essential for the good care of older people, both individually and at a population level. The introduction of unified NHS Boards and the implementation of Community Health Partnerships will provide a better context for flexible and innovative models of organisational integration.

26 If we are right in believing that many of the pressures on the acute sector, in so far as they arise from the health care needs of older people, are pressures of mis-provision; how are we to provide the co-ordinated, comprehensive system of ongoing care that we require?

27 There are some grounds for optimism. A significant and increasing proportion of the oldest patients admitted as emergencies have no new specific diagnosis (diagnostic category: 'symptoms and signs') (Figure 4.3) and have few needs that can be met only in the acute sector. Their use of acute beds is high and arguably harmful to them.

Figure 4.3
Emergency inpatient admissions by diagnosis group.
Aged 80 and over. Scotland. 1981 to 2002.

Source ISD Scotland

28 Their better management, by improving anticipatory care - both in terms of diagnostic uncertainties and the support/dependency issues involved - and by the provision of effective community-based rehabilitation, will bring about care at home and in local settings that is acceptable to them and their carers, and should also be both cost-effective and of high quality.

29 It is likely that continuing developments in biomedical technology and information and communications technology will result in easier and earlier access to much more powerful diagnostic facilities by community based healthcare professionals, with most benefit for the frail elderly wishing to remain at home through acute illness.

30 Two recent reports - Adding Life to Years, (Chief Medical Officer, 2002) and the NHSQIS National Overview of Older People in Acute Care ( NHSQIS, 2004) have focused attention on the potential for clinically appropriate alternatives to admission: the former setting policy goals, the latter reporting on a nation-wide survey in which 14 out of 36 sites visited demonstrated "multidisciplinary, multi-agency teams able to respond within 24 hours and provide
co-ordinated packages of care and rehabilitation" so that older people could remain at home when this was clinically appropriate.

31Adding Life to Years reported on a range of initiatives designed to: identify and monitor frail older people at home; provide support at home through exacerbation of acute illness; and assess, rehabilitate and support older people who had attended an A & E department. Examples include the Rapid Response Teams in Aberdeen and the IRIS (Intensive Rehabilitation Integrated Service) in North Glasgow.

32 The same document identified initiatives that had improved the management of exacerbations of chronic conditions ( e.g. the Acute Respiratory Assessment Service ( ARAS) in Edinburgh for people with chronic bronchitis; and an integrated service for people with heart failure in West Lothian) and schemes that had improved monitoring and care of older people in nursing homes (with avoidance of unnecessary admission, or shortening of acute stay when admission was necessary).

33 However, the NHSQIS report expressed concerns that such initiatives, though welcome, were not widely enough available. In the short term there is a strong case for ensuring that such initiatives are encouraged, properly evaluated and - where cost effectiveness and quality of services is proved - made much more widely available.

34 In the longer term, the rollout of such schemes, tailored appropriately to local conditions, has much to offer Scotland's frail older people. If they are properly accountable and quality-assured ( e.g. by NHSQIS), and evaluated in terms of service outcome, they will bring benefits in terms of efficiency and effectiveness, a shift in the balance of care and genuine advance in the care of long-term illness.

35 We believe it is possible to articulate an action plan that will lead to the change necessary to support our older population. The key policy implications of that plan are set out below.

• There should be greater integration of health and social services focused largely on the care and support at home of Scotland's frailer older people with a commitment to optimal management of long term conditions, continuing illness and disability.
• Unscheduled health services should be redesigned around the needs of the major client group - older people - to provide optimal journeys of care.
• Fit-for-purpose ICT should be introduced to facilitate, support and monitor the care of older people: at home; in and through unscheduled and post-acute care; through long-term and recurrent illness; and towards the end of life.
• Systems of clinical governance and performance management should be maintained and developed to ensure quality, cost-effectiveness and equity in the delivery of support and care for older people.
• There should be a health and social care workforce which is increasingly community-based and less focused than at present on acute and unscheduled care in order to reflect the needs of an ageing patient group.
• There should be central and regional planning of tiered and cost-effective patterns of care provision to reflect the many drivers of change in both primary and acute health sectors.
• There should be substantial developments, jointly with health and social care, in rehabilitation - in the context of unscheduled care, in post-acute care and via community based services.
• There should be an R&D agenda that reflects the realities of demography and need in order to support care of Scotland's older people.
• There should be clear targets/outcomes for services provided to older people by the Community Health Partnerships.
• There should be indicators specific to an anticipatory and co-ordinated approach to management of older people with co-morbidity and complex needs within the new General Medical Contract.
• The new Pharmacy contract should reflect the extended role that pharmacists and in particular community pharmacists could play in the monitoring and review of older people's medications and health status.

Long-term conditions

36 Long-term conditions (we use this term in the report interchangeably with "chronic diseases" and "long-standing illnesses") require ongoing medical care, limit what people can do, and are likely to last longer than one year. They are common in the Scottish population, more common in people living in deprived circumstances, more common in older people and, because Scotland's population is ageing, they will become even more common in future. If we do not continue to improve our management of long-term conditions at a local level, demand on acute services will continue to increase.

37 The evidence we have brought together shows that;

• Chronic disease is a vitally important health issue and is growing in importance
• Your social circumstances affect your chances of having a chronic disease
• A growing number of people have multiple chronic diseases which make their care particularly complex
• A small number of patients account for a disproportionate amount of health care use (especially hospital care)
• There is growing evidence that chronic disease can be better managed through:
• • increased support for self care
  • strengthening and extending primary care
  • offering responsive specialist care
  • managing vulnerable cases by anticipating their needs.

38 The management of chronic diseases has been improving in Scotland in recent years. For example, mortality from coronary artery disease is falling and, despite an increase in the prevalence of asthma, rates of hospital admission and sickness absence due to asthma have been decreasing. This improvement is largely due to the significant efforts made in the organisation of chronic disease management in primary care as well as closer working between primary and secondary care and health and social care. This section, therefore, focuses on how we can build on these improvements rather than recommending a change in the direction of travel. We need to support and strengthen the role of general practice and the extended primary care team while at the same time promoting better working across the entire health service and between health and social care to support patients and their carers to manage their conditions.

39 Prevention of chronic disease is crucial. As the WHO Report of 2002 said:

"Chronic conditions will not go away; they are the health care challenge of this century. Alteration of their course will require determined effort among decision-makers and leaders in health care in every country in the world. Fortunately there are known, effective strategies to curtail their growth and reduce their negative impact"
(World Health Organisation 2002)

40 We need to continue to move away from reactive, episodic care to continuous support in primary care for people with long-term conditions. We have an opportunity to look at our acute services and how we might provide them more effectively for people with long-term conditions.

41 Effective long-term condition management should be based on generic approaches to managing specific conditions, rather than condition specific approaches i.e. the basic principles of long-term condition management are the same, irrespective of the specific condition. Using individual separate approaches for the management of every possible long-term condition would be unworkable at a local level, would not address the issues raised by co-morbidity and would be confusing and inconvenient for patients and their carers. This does not preclude using locally developed protocols for common long-term conditions where these are found to be effective.

42 Intelligence is central to the delivery of care. This allows practitioners to make the most appropriate decisions about patient care on a person-to-person basis and will also enable us to predict what is required of our services. This means that evaluation and research need to be firmly embedded within the system, requiring collection, analysis and utilisation of appropriate data. Research topics could include: finding out what works and what doesn't; how best to use current knowledge and resource; monitoring ongoing trends in, for example, admission rates for chronic conditions, hospital utilisation by particular groups, number of GP consultations related to chronic disease; monitoring of the level of use of care pathways; assessment of patient experiences of their care, and the effect of the new GMS, Consultant and Community Pharmacy contracts.

43 The key to reducing unplanned admissions lies in primary care. Small changes in primary care can have a large impact on secondary care. As we have seen, it has been estimated that if each GP made one fewer referral every three months, there would be a 5% reduction in referred emergency admissions to hospital. Providing more facilities at a primary care level, such as access to a range of diagnostic services, could support better long-term conditions management.

44 However, we strongly believe that it is essential to take a whole systems approach to long-term conditions management and that the traditional boundaries between primary and secondary care and between health and social care need to be removed. In future, the use of terms such as primary and secondary care may not be useful.

45 The new General Medical Services ( GMS), the Consultant and the Community Pharmacy contracts provide opportunities to put in place appropriate incentives for improving long-term conditions management. In particular, the GMS contract rewards practices for achieving specified quality outcomes in the treatment of patients with chronic conditions. This contract needs to continue to be responsive to service change and the need to deliver more and better treatment of long-term conditions at a local level.

46 Pharmaceutical care is an area where a co-ordinated team approach will make major improvements to the care and services provided to patients. Approximately 80% of medicines are prescribed for chronic conditions. Community pharmacists have an important part to play in addressing the pharmaceutical care needs of patients with long-term conditions. Work in progress has demonstrated a willingness on the part of patients to engage in more innovative ways of obtaining their medicines and participating in self monitoring with help and support from their community pharmacist.

47 The area of mental ill health in general is one in which the kind of approach we have been outlining can be applied. Patients with such conditions need supporting and enabling community based services. The 'Doing Well by People with Depression' programme being rolled out by the Centre for Change and Innovation is a good example of what needs to be done systematically around the mental health agenda. The programme will:

• Build capacity for self-help to meet the needs of those with mild depressive disorders and to provide support through the pathway of care.
• Build capacity for psychological interventions in primary care to reduce pressures on secondary services.
• Improve assessment of symptoms and associated problems to ensure an agreed understanding of user need and the sequence of treatments and / or support.
• Improve access to a range of community based services and support.

48 We recommend that each NHS Board should, through its Community Health Partnerships, implement a system of long-term condition management that accords with the following principles:

49 We have looked at work in England, Europe and the United States relating to the benefits of a) stratifying people according to such factors as risks of complications and emergency hospital admissions and b) co-ordinating the care of those identified as being at very high risk using case managers.

50 The issue of case management (in simple terms, co-ordinated care for patients with highly complex needs) was raised in each of the three groups (Long-Term Conditions, Care of Older People and Care in Local Settings). Within health services, case management is increasingly used to manage people with one or more long-term condition with the broad aim of minimising symptoms and reducing hospitalisation. However, many patients have a mix of health and social care needs and case managers can also have a key role in co-ordinating services from both health and social care providers.

51 As our own data has shown, people with multiple chronic conditions are more likely to be hospitalised. Studies in the US have found that they are more likely to see a variety of physicians, take prescription drugs, and be visited at home by health workers. For example, people with five or more chronic conditions fill an average of 48 prescriptions, see 15 different doctors and receive 16 home health visits a year (Partnership for Solutions, 2002). One study showed that people with four or more chronic conditions were 99 times more likely to have an unnecessary admission to hospital than someone without a chronic condition (Wolff et al., 2002).

52 Given these complexities, care co-ordination seems essential. However as a recent review of the literature on behalf of the Kings Fund (Hutt et al., 2004) suggests, the evidence of its effectiveness is not yet clear cut. We do have some evidence, however. In the Castlefields Health Centre in Runcorn, Cheshire, a nurse, working closely with a social worker, considers patients eligible for care co-ordination if they are over 65 and meet at least three of the following criteria:

• four or more active long-term conditions;
• four or more medicines, prescribed 6 months or more;
• two or more hospital admissions in the past 12 months;
• significant impairment in one or more activity linked to daily living;
• significant impairment in one or more of the instrumental activities of living, particularly where no support systems are in place;
• in the top 3% of frequent visitors to the practice;
• older people who have had two or more outpatient appointments;
• older people whose total stay in hospital exceeded four weeks in a year;
• older people whose social work contact exceeded four assessment visits in each three month period;
• older people whose prescribing costs exceeded £100 per month.

53 The results were significant and sustained (Audit Commission, 2002):

• 15% reduction in hospital admissions;
• 31% reduction in average length of stay in hospital;
• total hospital bed days down by 41%;
• improved links between practice staff and other agencies in the community, leading to more appropriate referrals to other services and faster response times for assessments.

54 The King's Fund review cited above suggests that there is no ideal model that fits all requirements. We certainly do not have the evidence at this stage to apply a single national approach. But there is sufficient evidence to suggest that we should do some extensive trialling of case management. It may be that some supporting finance will be necessary to enable NHS Boards to undertake and evaluate trials.

55 In taking forward this work, we recommend that:

• NHS Boards need to be clear from the outset what they are trying to achieve and the nature of their target group.
• Since the emerging data on case management suggests that the more thorough and comprehensive is the case finding and the stratification of need, the better the results, we need to examine carefully the options available.
• Case management should be developed in close collaboration with social care providers to ensure that an appropriate range of health and social care services is available to prevent hospitalisation and to avoid duplication.
• All case-management initiatives should be evaluated in terms of their impact on health service use and patient outcomes.

Care in local settings

56 The overwhelming majority of people's health needs can and should be met locally. We start from a strong base in general practice. There are some who would have us believe that the NHS in Scotland is a highly centralised, super-specialised bureaucracy. That is far from accurate. It has been estimated that in the United Kingdom an order of magnitude of two billion 'health incidents' occur each year. Of these around only one in eight result in a contact with the formal health services (other than pharmacy). The vast bulk of 'health incidents' are dealt with by some form of self-care - being dealt with by the individual concerned, involving a visit to the chemist or with the help of family or friends. The patient's interaction with formal health care starts and ends in primary care in the vast majority of cases - 90% or so.

57 In order to 'road-test' its main ideas against the needs of specific patient groups, the Care in Local Settings Action Team set up three sub-groups:

58 In particular, the sub-groups were asked to look at the potential for improvement in terms of four areas of benefit for patients:

59 Despite the wide differences in the characteristics of the patient groups, the thinking of the three sub-groups overlapped considerably with common themes emerging.

60 All the groups, for example, stressed the importance of a tiered approach to care which was explicitly thought through so that patients were assigned to an appropriate level of intensity of care and care co-ordination. The importance of having a single individual with responsibility for co-ordinating all the elements of care was emphasised by the Children with Complex Needs group - in the form of a key worker - and by the groups looking at older people with mental ill-health and at cancer care - in the form of a care co-ordinator.

61 We set out below a very brief summary of the main findings and recommendations of the three sub-groups.

Care for people with cancer

62 There is recognition, across the Cancer Networks, that patients should have the opportunity to remain at home or as close to home as possible for the majority of their illness. However, many patients with cancer in Scotland continue to receive hospitalised care that can be remote from their home and their family. In a number of these situations it is likely that hospital admissions could have been avoided had there been greater support available locally.

63 Despite some good progress by the Cancer Networks over recent years, cancer service delivery in Scotland is focused largely within an acute care setting. Much has been done through out-reach and flexible working practices to move key elements of care from tertiary centres to the local District General Hospital. But can we go further still?

64 Currently in Scotland there is a definite shift to delivering cancer care outwith the specialist centres particularly in relation to the delivery of chemotherapy and supportive care. For example, within Ayrshire and Arran all patients with breast cancer and around 90% of patients with lung or colorectal cancer now receive their chemotherapy within the District General Hospital and by involving community hospitals, there is a potential to devolve this further. If this is to be further developed then engaging patients in self care will be an important role for cancer clinicians and the voluntary sector.

65 Growing evidence of the positive effect on outcomes of self-care and self management both in general and for patients with cancer suggests that much more should be done in this area. Within cancer care, promoting self care is vital as patients spend very little time within a supervised environment and the majority of time within their own homes. NHS Boards and Cancer Networks should develop and implement self care strategies aimed at improving patient outcomes. Information and communication technology to support self-care and promote communication between care providers and patients should be utilised.

66 In relation to surgical intervention the relationship between volume and outcomes is particularly important. There is now substantive evidence that for complex cancer surgery (for example pancreatic or oesophageal cancer) there is an inverse relationship between surgeon volume and mortality. For more common cancers there is also evidence that a specialist surgical intervention is associated with improved survival although the thresholds for this are far from clear. Therefore whilst surgery for certain cancers is safe within District General Hospitals a critical mass of relevant expertise is required and should be maintained at a regional level.

67 National protocols for delivering more cancer treatments within local communities should be developed and implemented. To support more local treatments remote patient monitoring linked to the electronic health record should be adopted.

68 The delivery of palliative care within the home setting reduces hospitalisation during the last three months of life, preventing avoidable admissions close to death. The delivery of co-ordinated care, particularly palliative care, involving practice based teams, specialists and social care can reduce avoidable hospital admission.

69 All patients with cancer in Scotland should have timely and supported discharge and follow-up care and should have access to a cancer specific rehabilitation programme. However patient perspectives on the quality of care received in the community after discharge indicate that current service provision is inadequate and that many patient needs are unmet.

70 There is a clear need therefore to undertake empirical research in this area with a view to delivering more effective discharge, follow up and rehabilitation within local communities that is acceptable to patients and does not compromise patient outcomes.

Older people with mental ill-health

71 Most care for older people with mental ill-health will be provided by local health and social care teams receiving clinical leadership from primary care practitioners. The role of specialist services will be specialist assessment, the provision of complex, possibly innovatory, treatment, monitoring highly complex cases and providing provision and support to other practitioners.

72NHS Boards should develop plans for the phasing down of existing NHS Continuing Hospital Care places for older people who experience mental ill-health, with a clearly identified end-point.

73 Unpaid carers, primarily family members, make a massive contribution to supporting older people with mental ill-health. Much more attention must be given to the identification, assessment, support and training of carers.

74 E-health or tele-care offers immense potential over the coming years to enhance our capability for supporting older people with mental ill-health at home.

75 A robust Primary Care Service working to defined standards will ensure early identification and treatment of this client group. Practices will need to have registers of patients in these categories and have systems in place to monitor their health and behaviours. This will ensure that an early warning system exists and that people are not inappropriately admitted to hospital.

76 Health-care systems should ensure a holistic approach to this area to avoid the mental health needs of older people being overlooked when the 'presenting' health problem is physical.

77 Specialised intensive home treatment in the form of a rapid response service has been successful in treating older people with major depressive disorder and paranoid states and in providing hospice care for people with psychiatric illness at the end of their lives.

78 The provision of appropriate day facilities is critical. Day hospitals will act as an alternative to inpatient admission, as a means of preventing admission or as a "step-down" on discharge from inpatient care - or a combination of these.

79 Effective models of care management for people with complex long term conditions such as dementia will need to combine intensive clinical care with the co-ordination of other health and social services.

Children with complex needs

80 The number of children with complex needs and severe disability is increasing. This is due to a number of factors including increased survival of pre-term babies and increased survival after severe trauma or illness.

81 All children and young people with complex needs should receive an effective multidisciplinary assessment that leads to accessible and timely intervention, care and support for children and their families and maximises the potential of each child.

82 Children, young people and their families should receive appropriate information about their care package and be involved in planning the care package.

83 Each child should have a named key worker who will coordinate all their primary care needs across health, local authority and voluntary sector providers and a named paediatrician who will support the key worker and the child by coordinating all secondary and tertiary care with pathways for service delivery. The key worker has the overall responsibility for the co-ordination of all aspects of care and should aim to integrate children into mainstream and local services wherever possible.

84 Children and young people with complex needs have the right to a formal multi-agency annual review of their needs with regular assessment and evaluation. The review should be linked to the Coordinated Support Plan process and in many cases be integrated within the CSP.

85 Children with complex needs and their families are entitled to expect that children who have packages of care provided from home on an intensive basis will be offered a choice between their existing package of care and a model where some care is provided in a specially designed facility. Such provision would allow a number of children to be looked after in a homely setting.

86 Discharge planning for children with complex needs, and in particular those on ventilation, has been shown to be variable across the country with no clear process and consistency of discharge planning arrangements available. A discharge pathway should be in place for all children with complex needs. This should be developed in conjunction with NHSQIS.

87 From the Care in Local Settings group a number of common issues were identified:

• delivery of more care in local settings is possible assuming appropriate support networks
• patients, carers and professionals want safe and effective care as close to the patient's home as possible
• regional, and in some instances national, planning is required to support the delivery of care in local settings
• there must be local ownership of service change to ensure sustainability.

A system of local care

88 The Action Teams whose work has been reported in this chapter have addressed similar and overlapping issues from complementary perspectives. Their findings have all pointed in broadly the same direction. What should a system of care look like which will deliver on these recommendations?

89 Not all local care is concerned with long-term conditions or the needs of older people. "As local as possible..." is a theme which permeates this Framework and local care is dealt with at various points in the Report. In particular Chapter 7 contains detailed recommendations on the configuration of services for unscheduled care and Chapter 10 looks at the specific requirements of health care in rural Scotland.

90 That said, the main business of a system of local care will be in the related and overlapping areas of care of older people and support for people with long-term conditions. The better designed is such a system and the more smoothly it runs, the more successful we will be in shifting the balance of care out of the hospital and closer to the patient's home.

91 In Scotland, the main organisational vehicle for the delivery of care in local settings will be the Community Health Partnership. Everything which is said in this Chapter will be of particular relevance to defining the mission of Community Health Partnerships.

92 Perhaps the best overall vision of what a system of local care should look like can be derived from the Chronic Care Model (Figure 4.4). This model has been developed and applied over a period of years in the United States and elsewhere and has been highly influential for example in the Department of Health's thinking about supporting long-term conditions. (DoH, 2004; DoH, 2005).

Figure 4.4
A system of Local Care: The Chronic Care Model.

http://www.improvingchroniccare.org/change/model/components.html

93 We recommend that NHS Boards and Community Health Partnerships adopt this model for local care as the basis for their planning of services to be delivered in a local setting.

94 Following the broad outlines of the Chronic Care Model the following are some of the main components of a good system of local care:

• whole system working
• care co-ordination and case management
• care assessment and stratification
• active, involved patients and carers
• a comprehensive population based information system
• mechanisms for delivering service change and quality improvement.

Whole system working

95 There is a lot of talk about whole systems working but a tendency that in doing so, not everyone is on the same page. The whole system can look different depending on your perspective. The Audit Commission, in their report "Integrated services for older people - building a whole systems approach in England" in the context of an exemplary blueprint for services for older people provide a useful description of whole system working:

96 In order to ensure a degree of consistency in the approach taken by local organisations to deliver local care, we recommend that each NHS Board adopts a system of local care that is likely to lead to integrated, patient-centred delivery. Looking at the Audit Commission work and a range of other approaches, it is possible to identify a number of common features. Successful, integrated whole systems will tend to include:

• a recognition that health care is part of a wider system
• a clarity about what are the system aims and priorities
• a means to develop partnership and co-ordination to achieve those aims
• an integrated approach using IT to link patients and providers
• an enhanced role for the patient.

97 In Chapter 12 we discuss some of the main mechanisms for achieving greater collaboration and integration in service delivery such as Regional Planning Groups, Managed Clinical Networks and Community Health Partnerships.

98 The NHS is of course only one part of the whole system of care. In Chapter 12 the framework for working with local authorities and social care in particular is outlined. In Chapter 5 we discuss the need for working with a range of partners, from patients themselves through carers and volunteers to the voluntary sector itself.

Care co-ordination and case management

99 Some level of care co-ordination is required for everyone with a long term condition as was outlined in the recommendations of the Long Term Conditions Action Team. However the need is greatest for those whose needs are most complex - those who are older, frailer and with more than one long-term condition.

100 We do not recommend one particular model of case management. The Castlefields model - now also known as UNIQUE care - has already been presented as illustration. The Evercare model is being widely piloted and evaluated in England. (DoH, 2005).

101 What the different methods of case management share is more important than what distinguishes them. As we have seen, as the population ages, the task of the care system will be increasingly that of looking after older people often with multiple long term conditions and a range of social issues. Their care and management is extremely complex involving a range of agencies, practitioners and specialisms. There needs to be a mechanism for ensuring that all the elements of care are delivered in a co-ordinated fashion.

102 Perhaps the simplest way of ensuring this is to have one person responsible for the co-ordination of the care of a given individual. It is important that the care provided is not simply reactive when a crisis has occurred. The power of case management derives from the provision of co-ordinated care which is proactive and preventive: it is primarily concerned to ensure that everything which can be done is done to prevent crises happening rather than waiting to react once crises have happened.

Care assessment and stratification

103 An essential feature of a local system of care for long-term conditions is that all patients with a long term condition are assessed so that an appropriate level of care co-ordination can be allocated. As outlined in the recommendations of the Long-Term Conditions Group, the more thorough and comprehensive is the case-finding of patients with complex needs and the assessment of requirements for care co-ordination among the entire population of people with long-term conditions, the better are the results.

104 The Department of Health's strategic guide to support for long term conditions (Department of Health, 2005) is a recent example of a unified approach to care stratification. Their approach is developed with reference to the 'Kaiser-Permanente pyramid' relating to care for long-term conditions.

Active, involved patients and carers

105 Partnership between professional health care staff and informed and involved patients and carers is a fundamental pre-requisite for the model of care outlined here. In the next Chapter we outline how the NHS needs to go much further in working with patients, carers and other partners in providing or co-producing care for each patient.

A comprehensive population based information system

106 Progress in improving the system of local care can of course be made without an integrated patient-based information system. However given that the main task of such a local system of care will be managing a growing group of patients with complex needs and input from a wide range of agencies and services, an information system which will act as the 'glue' for the system becomes ever more important. In Chapter 13 we outline what is required from an information system able to support a system of care organised according to the Chronic Care Model. The three key requirements are assessment of need or care stratification at a population level; care planning and co-ordination at an individual level; and monitoring of outcomes and evaluation for quality improvement.

Mechanisms for delivering service change and quality improvement

107 A culture of quality improvement needs to be built in to the delivery of care in local settings. Too often in Scotland excellent and innovative initiatives are developed in one locality without being adopted as best-practice in other areas. Good information systems and audit must be used to generate rapid feedback of key parameters as part of the process of quality improvement and service redesign.

108 A considerable amount of work has been done by clinicians, NHS Boards and by the Centre for Change and Innovation to redesign services. This work needs to continue and to quicken in pace to meet the demands of a more rapidly changing environment. Crucially, and this is something that has been raised consistently with us by NHS staff and the public, we need to find a way to evaluate these changes quickly and, if there is evidence about their effectiveness, roll them out across the system. If change is shown to work, then the whole of Scotland needs to have equitable access to that redesigned service.

An agenda for Community Health Partnerships

109 Community Health Partnerships will be the main vehicles for developing a modern system of care in local settings. CHPs will be expected to:

• deliver services more innovatively and effectively by bringing together those who provide community based health and social care;
• shape services to meet local needs by directly influencing Health Board planning, priority setting and resource allocation;
• integrate health services, both within the community and with specialist services, underpinned by service redesign, clinical networks, and by appropriate contractual, financial and planning mechanisms;
• improve the health of local communities, tackle inequalities and promote policies that address poverty and deprivation by working within community planning frameworks;
• be the main NHS agent through which the Joint Future agenda is delivered in partnership with local authorities and the voluntary sector.

110 All of this fits well with our analysis of what needs to be done but it is an ambitious agenda for these new organisations. We suggest that CHPs need to focus their activities on the four priorities which have structured our work on care in local settings:

111 We also recommend that in order to establish a coherence and consistency to the work of CHPs that we should establish some clear and specific targets for them. For example the 2004 Spending Review contains the target that by 2008-09 we will reduce the proportion of older people (aged 65+) who are admitted as an emergency inpatient two or more times in a single year by 20% compared with 2004-05 (Scottish Executive, 2004).

112 In order to achieve these objectives, CHPs should introduce care co-ordination or case management as one means to ensure that the benefits of service integration flow through to patients. Care co-ordination programmes should be aimed at achieving progress on one of the four strands and in the first instance should be targeted at the highest risk populations.

113 The fact that three quarters of the heavy users of the health-care system are aged 75 and over, the fact that the whole growth in emergency admissions to hospital over the last 20 years is accounted for by over 80s, the fact that most of these frail elderly people have multiple chronic diseases tells us something about where we need to focus our attention. However we need to be precise in this area. We recommend that a nationally consistent approach is taken to developing a means of identifying those patients most at risk of avoidable hospital admission and with the greatest need for intensive case management.

114 Achieving integration of care services has been a key policy objective of government at a Scottish level since devolution and before. Integration is seen as a key factor in removing the frustrations and delays which are seen as bedevilling health care in Scotland. The implementation of an integrated care system is seen as a central component of a modernised health care system. In Chapter 12 we outline the main mechanisms available for ensuring that we attain the necessary levels of integration in service design and delivery - with Community Health Partnerships at the heart of this endeavour.

Summary of recommendations

Meeting the health care needs of older people with long term conditions is the biggest challenge for the NHS in Scotland. It requires a shift in the balance of care from fragmented, episodic care to integrated, continuous care. To enable this shift:

• Each NHS Board, through its Community Health Partnerships ( CHPs), should introduce a systematic approach to managing long term conditions in accordance with the following principles:

The approach should:

• • be holistic, i.e. focus on the whole person
  • involve people in their own care
  • provide care in the least intensive setting
  • aim to minimise unnecessary hospital visits and admissions
  • be co-ordinated in Primary Care
  • be provided by a multi disciplinary team
  • integrate generalist and specialist care
  • integrate health and social care
  • use a population approach
  • use good information systems and intelligence
  • identify people with long term conditions and place them on a general practice based register with their appropriate consent/authorisation
  • use a structured approach to call and recall
  • review care using evidence based protocols and guidelines
  • focus on improving medicines management
  • use community and voluntary resources well and provide support for carers.
• The approach adopted should have measurable outcome targets (set by The Scottish Executive) to demonstrate progress
• All CHPs should prioritise the following actions;
• • supporting patients at home
  • preventing avoidable hospital admission
  • identifying opportunities for more local diagnosis and treatment
  • enabling appropriate discharge and rehabilitation.
• The Scottish Executive should initiate a project to identify the group of patients with
  long-term conditions most at risk of hospitalisation with a view to providing them with proactive care
• The Scottish Executive should work with NHS Boards to trial and evaluate a number of approaches to care co-ordination

References

Audit Commission (2002) Integrated Services for Older People: building a whole system approach in England.

Chief Medical Officer (2002) Adding Life to Years: Report of the Expert Group on Healthcare. Stationery Office, 2002. http://www.scotland.gov.uk/library3/health/alty-00.asp

Department of Health (2004) Chronic Disease Management: a compendium of information. May 2004. http://www.natpact.nhs.uk/uploads/Chronic%20Care%20Compendium.pdf

Department of Health (2005) Supporting People with Long-Term Conditions. January 2005. http://www.dh.gov.uk/assetRoot/04/09/98/68/04099868.pdf

Hutt R, Rosen R and McCauley J (2004) Case managing long-term conditions. King's Fund. November 2004.

NHSQIS (2002) Standards for Older People in Acute Care. October 2002.

NHSQIS (2004) National Overview: Older People in Acute Care. February 2004.

Partnership for Solutions (2002) Medicare: cost and prevalence of chronic conditions. July 2002.

Wolff J, Starfield B and Anderson G (2002) Prevalence, expenditures and complications of multiple chronic conditions in the elderly. Archives of Internal Medicine 162: 2269-2276

World Health Organisation (2002) Innovative Care for Chronic Conditions: Building Blocks for Action. Global Report. W.H.O. 2002

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