Part 1: A Framework for Change
1. Long term conditions, or chronic diseases as they tended to be referred to, are conditions that last a year or longer, impact on a person's life, and may require ongoing care and support. The definition does not relate to any one condition, care group or age category, so it covers children as well as older people and mental as well as physical health issues. Common long term conditions include epilepsy, diabetes, some mental health problems, heart disease, chronic pain, arthritis, inflammatory bowel disease, asthma and chronic obstructive pulmonary disease ( COPD).
2. Around 2 million people in Scotland have at least one long term condition, and one in four adults over 16 reported some form of long term illness, health problem or disability.
3. Long term conditions become more common with age. By the age of 65, nearly two-thirds of people will have developed a long term condition. Older people are also more likely to have more than one long term condition: 27% of people aged 75-84 have two or more such conditions.
4. The human costs and the economic burden of long term conditions for health and social care are profound. Sixty per cent of all deaths are attributable to long term conditions and they account for 80% of all GP consultations. People with long term conditions are twice as likely to be admitted to hospital, will stay in hospital disproportionately longer and account for over 60% of hospital bed days used. Most people who need long term residential care have complex needs from multiple long term conditions.
5. There are clear links between long term conditions, deprivation, lifestyle factors and the wider determinants of health. People living with a long term condition are likely to be more disadvantaged across a range of social indicators, including employment, educational opportunities, home ownership and income. Someone living in a disadvantaged area is more than twice as likely to have a long term condition as someone living in an affluent area, and is more likely to be admitted to hospital because of their condition.
6. People living with long term conditions are also more likely to experience psychological problems. Around one in three people with heart failure and diabetes and one in five people with coronary heart disease and chronic pain will experience depression. Prolonged stress alters immunity, making illness more likely and recovery more difficult, especially for those who are already unwell.
7. A significant number of long term conditions are genetic in origin. The Single Gene Complex Needs Project aims to integrate health and social care to build capacity and improve the quality of life of this group of people.
8. The Scottish Government has set out an ultimate 'Purpose' which unites public services and requires them to work in partnership to deliver sustainable economic growth and opportunity for everyone in Scotland to flourish. NHSScotland has a central role in supporting this purpose. It includes a key requirement for NHSScotland to develop services which will enable people in Scotland to live healthier, longer lives. Better Health, Better Care (Scottish Government, 2007) set out the Action Plan for NHSScotland which is intended to deliver this outcome. Increasingly this will be focussed on the priority of raising the quality of NHSScotland healthcare services to world leading levels.
9. A new Healthcare Quality Improvement Strategy is also being developed, to create a clear vision and focus for the range of improvement work already being driven forward across NHSScotland. The proposed approach will support the six dimensions of quality :
providing care that is responsive to individual patient preferences, needs and values and assuring that patient values guide all clinical decisions
avoiding harm to patients from care that is intended to help them
providing services based on scientific knowledge
avoiding waste, including waste of equipment, supplies, ideas, and energy
providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or socio-economic status
reducing waits and sometimes harmful delays for both those who receive care and those who give care
Source: Institute of Medicine
10. To support quality improvement, we need a system of decision support that enables clinical care to be delivered in line with the preferences of people with long term conditions and the best available scientific evidence. This requires the development and dissemination of guidelines that have been developed in conjunction with people with long term conditions. There also needs to be a supporting infrastructure of training and education for all practitioners alongside support that allows people with long term conditions to make well-informed decisions.
11. One of the key drivers of healthcare quality is person-centred services. Approaches across NHSScotland increasingly focus on the development and delivery of healthcare services around each individual's preferences and requirements. These approaches include the work to develop a 'mutual' NHS in Scotland. Establishing and communicating people's rights, expectations and responsibilities is a major strand of this approach. Another strand is the Better Together Programme which is gathering evidence on what people in Scotland expect of their NHS. It will then measure actual patient experience of healthcare services. From this, we can inform action to improve services. The programme is concentrating initially on 3 areas of patient experience: stays in hospital, primary care and long term conditions. We will ensure that this work aligns with the actions set out in the Long Term Conditions Action Plan.
12. A further strand is the Talking Points: Personal Outcomes Approach to assessment, care planning and review now being implemented in most community care partnerships in Scotland. It places each person's desired outcomes at the heart of the design and delivery of their care and support, so that they can continue to live at home.
An Integrated Approach
13. Scotland's approach to the management of long term conditions is based upon the Chronic Care Model developed by Ed Wagner 1 and his colleagues at the MacColl Institute for Healthcare Innovation. This suggests that the quality of support for people with long term conditions can be improved if action is taken to create the conditions that support a productive partnership between informed and empowered people with long term conditions on the one hand, and prepared, proactive health teams on the other.
Figure 2: Wagner's Chronic Care Model2
14. NHS Scotland aims to create these conditions by :
- supporting self management by empowering people with long term conditions to become more involved in managing their own health and healthcare and the impact of living with long term conditions;
- building services around the needs of people with long term conditions, with a broad approach to quality improvement in order to deliver better, faster and more local access to healthcare health services;
- setting standards and providing toolkits to enable best practice and to make sure people get the care they need;
- enabling information to be created, used and shared by and for the benefit of people with long term conditions; and
- addressing the needs of the workforce, in particular through developing structures to allow more time for consultations and promote continuity of care.
15. Our vision for long term conditions adapts Wagner's Chronic Care model to better reflect NHS Scotland's integrated system, with its focus on quality improvement and its emphasis on a mutual care approach as described in Better Health, Better Care. The 6 domains of the Chronic Care Model have been mapped to 6 key components of the model for long term conditions care in Scotland (see Figure 1):
- a partnership between informed, empowered people with long term conditions and prepared, proactive multi-professional care teams, drawing on the power of people's stories;
- a strategy ( Gaun Yersel') and resources to support Self Management;
- an integrated system of care across primary care, hospitals, social work, housing, community and voluntary sectors;
- decision support (programming evidence-based medicine and clinical guidelines into care and support delivery processes) through quality improvement and workforce development supported by standards, guidelines, education, practice development and Managed Clinical Networks;
- care enabled by information systems that support sharing of data; and
- delivery assured through the national performance framework, HEAT targets and the Community Care Outcomes Framework.
16. This approach recognises the need to mobilise resources beyond NHSScotland in order to improve the lives of people with long term conditions. Community Health Partnerships ( CHPs) have a vital role to play in prioritising and co-ordinating such activity and many have already used the Long Term Conditions Self-Assessment Toolkit to support them in this task. The Toolkit remains available and can be used to help CHPs benchmark their services against those provided elsewhere in Scotland and develop action plans to improve their local systems, structures and care pathways.
Supporting Self Management
17. Better awareness of their long term condition helps people understand their symptoms and experiences and improves their long term health and wellbeing. The role of the care professional is to encourage self confidence and the capacity for self management and to support people to have more control of their conditions and their lives and promote their efforts to enhance their health and wellbeing. This means having a shared approach to setting goals and problem solving, and signposting people to the type of support and information they need. It also means having a more outcome-focused approach to planning and reviewing their individual situation. It should take account, too, of people's inherent ability for self-healing and recovery.
18. Scotland's approach to self management is set out in the strategy document Gaun Yersel!. This was developed by the Long Term Conditions Alliance Scotland ( LTCAS) in partnership with people with long term conditions, and describes a set of principles that encapsulate the core messages of the strategy.
19. LTCAS is an independent, national charity that brings together hundreds of voluntary and community organisations across Scotland to give a national voice to ensure the interests and needs of people living with long term conditions are addressed. It does this through influencing and campaigning, supporting and improving practice, supporting the voluntary and community long term conditions sector and tackling health inequalities
20. The Long Term Conditions Alliance ,continues to play a lead role in implementing many of the recommendations in Gaun Yersel!. In particular it is responsible for:
- managing the Self Management Fund that builds the capacity of voluntary and community groups to support self management;
- gathering evidence of innovative practice and positive developments in self management;
- operating a "long term conditions hub" that provides support for the work of the range of voluntary sector organisations that represent people with long term conditions; and
- supporting a shared approach to long term conditions policy development with the Scottish Government.
21. Effective self management relies on the provision of accurate, relevant, timely and accessible information offered from a trusted source on a basis which people feel is sensitive to their situation. The National Health Information Support Service is developing a single public portal for an online health information resource. It will also offer quality-assured local and national information from the NHS and other sectors, including the third sector, a national health information helpline; and a network of branded health information support centres, embedded in local communities.
22. Scotland's model of long term conditions management is based upon a structured, systematic and integrated approach to the provision of care.
23. With the right information, advice and support, most people are able to manage their own conditions. However, the intensity of co-ordination and support required will vary according to the morbidity, dependency and complexity of the conditions involved. NHSScotland therefore needs to provide support at 4 levels:
- a solid foundation of population-wide prevention, health promotion and targeted health improvement activity, through action to prevent disease, raise awareness of risks to health and support healthy lifestyle choices. This is essential given the high prevalence of long term conditions which are preventable, and the health inequalities associated with living with long term conditions;
- self management, where people with long term conditions are given the information and other practical support they require to manage their own conditions in a way that helps them use this information to their own benefit;
- condition management in which a greater level of professional support is required to help avoid complications or slow the progression of disease; and
- for those with particularly complex needs who require a more intensive level of care, often referred to as 'case / care management', a co-ordinated and proactive approach to improve health and help them avoid being admitted unnecessarily to hospital.
24. This approach is designed around the needs of individuals and is based on work done initially by organisations such as Kaiser Permanente (see figure 3).
Figure 3: Kaiser Permanente Pyramid (adapted)
25. The model is a dynamic one. People move up and down the pyramid as their condition, their ability to cope and their sense of wellbeing fluctuates, or as external factors change. The intensity of co-ordination and support people receive generally changes in response to this movement. The challenge for professional care services is to shift towards providing proactive anticipatory support to reduce flare-ups, promote greater stability, increase confidence and control and enable a timely return to a need for less intensive support. This requires action by NHS Scotland across each of the components of the long term conditions model. The role of self management applies at all levels of the pyramid.
Managed Clinical and Managed Care Networks
26. Managed Clinical Networks ( MCNs) and Managed Care Networks have a key role in quality improvement and clinical engagement and contribute to planning of services across the whole system ( SEHD (2007) HDL 21). MCNs engage with people with long term conditions, the voluntary sector and clinical communities across acute and primary care, and deliver evidence-based care supported by appropriate governance arrangements.
27. Through their quality assurance and audit programmes, MCNs connect local teams to timely information on outcomes. This is a powerful lever for change in practice and nurtures a sense of pride, motivation and satisfaction in their work. For maximum impact and adherence, evidence-based care pathways, protocols and best practice guidelines are most effective when embedded in day-to-day care delivery processes and in a way that prompts their use. Gaps and variance from care pathways can be minimised and easily recognised.
28. The emergence of telehealthcare presents an additional opportunity in terms of long term conditions pathways, support systems and protocols. Decision support tools, combined with telehealthcare solutions, guide clinicians towards correct and safe practice and allow better skill mix of teams. Examples which support self management and effective care delivery include: remote monitoring; specific alerts enabling swift and appropriate responses to events such as seizures, falls and heart attacks; facilitation of social networking and peer support; and environmental sensors and equipment which enable increased control and safety in the home.
29. Developing workforce capability is critical for success. Levers for independent contractors such as GPs and community pharmacists, and emerging workforce models for community nursing and Allied Health Professionals, are considerable opportunities for expanded scope of practice and new approaches to skill mix. We need to prepare and equip staff for new roles and approaches to care by identifying their learning needs and addressing gaps through locally delivered practice development initiatives, building on existing educational provision. This can be achieved, where appropriate, through access to tailored learning resources for long term conditions and making changes to their existing practice. We also need to develop staff confidence and capability in using telehealthcare solutions to support proactive continuous care for people with long term conditions.
30. The Chronic Care model identifies the need for information systems that support effective decision-making amongst all partners. Information is vital in order to enable NHS Boards' clinical staff to work with people who want to develop care plans that are appropriate to their needs. In particular, this information should enable NHS Boards to target anticipatory care at those thought to be most at risk from their condition.
31. Through the work of NHS National Services Scotland and its partners, information systems are therefore being developed to support:
- risk-stratification of the population as a basis for identifying individuals at high risk of flare-ups and recurrent admissions;
- recall - information to co-ordinate and manage the care of each individual; and
- review - information for monitoring, performance management and quality improvement.
32. ISD is continuing to develop the SPARRA (Scottish Patients at Risk of Readmission and Admission) risk prediction tool, which is currently based on hospital admissions data, including exploring the possibility of incorporating risk factors present in other datasets such as primary care, social care and prescribing data. Some NHS Boards are also developing their own local risk-stratification or case-finding tools. Access will be supported by SCI Gateway, using tools to deliver integration. An essential part of this strategy will be to design, develop, and implement a system which delivers the information management functions that support a personal health record or electronic care plan to enable engagement, self management, risk prediction and clinical information support for long term conditions. This will be assisted by an approach to information governance which actively enables data sharing across the whole health system and with care partners from other agencies, in line with the universal goal of individual safety.
33. Scotland's integrated performance framework helps focus investment and action on improving health, wellbeing and outcomes for people with long term conditions.
34. Within NHS Scotland, this is achieved through a focus on meeting a series of 30 performance targets, known as the HEAT (Health, Efficiency, Access and Treatment) targets that reflect the Scottish Government's key priorities for health and healthcare. These are set out in Annex A, along with their links to the national outcomes of the Scottish Government and to the Community Care Outcomes Framework which is being used by Community Care Partnerships to support delivery of relevant outcomes in the Single Outcome Agreements.
35. In 2009-10, 5 of the 30 HEAT targets apply specifically to the management of long term conditions. These are:
- T6: Reduce long term conditions admissions/bed days
- T7: Improve quality of health care experience
- T8: Increase Complex Care at home
- T10: Reduce rate of attendance at A&E
- T12: Reduce 65+ emergency bed days
36. Work is also taking place to develop new or amended targets that better reflect the strategies and approaches now being adopted to the management of long term conditions. In particular, consideration is being given to new targets that:
- focus on improvements to services for people with long term conditions;
- reflect the role of NHS Boards in empowering and enabling people with long term conditions to manage their own conditions.
37. Each of the 14 territorial NHS Boards submits an annual Local Delivery Plan that sets out their projected performance against each of these HEAT targets. These are then used as the basis for both ongoing performance management by Scottish Government and, in particular, the process of annual review, led by Scottish Ministers.
38. The Long Term Conditions Collaborative ( LTCC) is the national quality improvement programme designed to support NHS Boards to deliver sustained improvements in the quality of care provided for people with long term conditions throughout Scotland. The national programme team ensures that work on long term conditions is integrated with other improvement activities across NHS Scotland. In order to realise shared opportunities to improve the experiences of patients across Scotland, the team ensures that the programme works in an integrated way with the 18 Week Referral to Treatment Time programme, the Mental Health Collaborative, Scottish Patient Safety Programme, the Better Together programme, the Rehabilitation Framework, the Joint Improvement Team and the Outcomes Approach to Community Care.
39. Improving the quality, experience and safety of support for people with long term conditions by delivering services that are clinically effective and responsive to people's needs, but which are also more efficient and make best use of skill mix and local resources, will be of significant benefit to the whole system. Meeting the challenge of better supporting people with long term conditions will unlock considerable capacity in the system to meet a raft of stretching Access targets and will support a shift in the balance of care. Delivering the improvements outlined in this Action Plan is essential for the future sustainability of services given the demographic, economic and workforce challenges Scotland is facing.
40. The Long Term Conditions Collaborative has developed a set of clear and tangible improvements that will make a big impact on the way people with long term conditions manage their own conditions are supported by others. These High Impact Changes ( HIC) are generic, apply across the Long Term Conditions pathway and reflect different domains of Wagner's Chronic Care model (Figure 2). The High Impact Changes also map to key components of Scotland's model for long term conditions (Figure 1) that reflects NHS Scotland's integrated system and mutual care approach as described in Better Health, Better Care.
41. Each HIC is made up of a bundle of improvement actions based on changes that have been tried and tested by health and social care practitioners in the UK and beyond and reflect what people have said should be done to improve their experience of living with long term conditions.
Achieving the Vision for Long Term Conditions Management requires all NHS Boards to commit to action in 7 areas
LTC Mutual Care model
LTCC High Impact Changes
We empower people living with long term conditions, their carers and the voluntary sector to be full partners in planning, improving quality and enhancing the experience of care.
We support people with long term conditions and their unpaid carers to be involved in person-centred care planning.
We commission self-management peer support for people with long term conditions and their carers and provide relevant, accessible information.
We train staff to have the right knowledge, skills and approach to long term conditions care.
We provide better, local and faster access to healthcare, social care and housing services for long term conditions.
We strengthen the contribution of Managed Clinical/Care Networks ( MCNs) in improving support for people with long term conditions
Clinical Information Systems
We have information systems that support registration, recall and review of people with multiple conditions, and support data sharing across all partners.
42. The Action Plan for delivering these High Impact Changes is set out in detail in Part 2. Where more than one agency is included in the 'Lead Responsibility' column, it is for those agencies to decide collectively which of them will take responsibility for reporting on progress, and for ensuring whatever wider engagement is considered necessary.
43. The Long Term Conditions Action Plan is one of a number of initiatives within Scottish Government that come together in order to improve the lives of people with long term conditions. The key relationships are set out in graphical form in Figure 4.
Figure 4: Strategic Fit
44. Through their Local Delivery Plans, NHS Boards will be expected to report on progress on the actions placed on them. The Health Directorates' Long Term Conditions Steering Group will, with publication of this Action Plan, become a Programme Delivery Board chaired by the Director of Healthcare Policy and Strategy with responsibility for reporting overall progress on implementation of the Action Plan, as part of the Scottish Government Health Directorates' monitoring of all the Better Health, Better Care workstreams.