Long term conditions - framework: consultation paper

Background and introduction

The purpose of this consultation

1. Many people in Scotland live with the challenges of a long term condition; recently reported as 38%^[1] of our population. Long term conditions can impact a person’s whole life: their physical health, mental health, relationships, finance and work.

2. The Scottish Government has a number of strategies and policies in place to improve care and support for a range of long term conditions and condition groups. The approaches taken focus on safe, effective and person-centred care, delivered through a healthcare quality and improvement approach. These have included plans on neurology, out of hospital cardiac arrest, heart disease, diabetes, respiratory, pain management, stroke, cancer and long covid.

3. As some condition-specific Scottish Government policies approach the end of their planned duration, we have begun reviewing our approach. This has presented an opportunity to consider if and how policy support for other long term conditions can also be provided. Now, as we plan, we are seeking wide-ranging views on what should be prioritised.

4. As we reassess how best to focus policy work for long term conditions, there will be a need to prioritise areas for improvement. We recognise that improvement priorities may sometimes cut across all conditions, and other times be more condition-specific. The consultation therefore asks a number of questions around what is working well in long term conditions, what could be better, and how you think we should prioritise work as we move forward.

5. The Scottish Government’s role is to set policies and frameworks at a national level. NHS boards have responsibility for their workforce, service planning and delivery of those services in their local areas. The role of this consultation is therefore not to reassess local planning of services, instead it is intended to help us identify improvement priorities for long term conditions at a national level. These priorities will help us support the delivery of the NHS reform and renewal work which is underway to make people’s experience of the NHS in Scotland better than it is today.

6. We recognise that engaging with care and support for long term conditions can be a burden for the person receiving treatment, due to the impact on their personal resources. The Chief Medical Officer’s 2024 report^[2] sets out the need for health service providers to have respect for a person’s most precious resources, their time, energy and attention, and to make sure that healthcare’s footprint upon these resources is minimally disruptive. Realistic Medicine is an approach to healthcare that puts people at the centre of decisions about their care. This personalised approach is especially important for people living with long term conditions and multimorbidity whose situation and experiences are unique to them, and will inform the choices they make around their health and care.

7. To inform topics and questions for this consultation we have spoken to a small number of people with lived experience, across a range of long term conditions, to understand what is and isn’t working well with their care and support at present. We asked the same questions of a number of third sector organisations, as well as clinicians via the Scottish Government’s Professional Advisory Group, again to help inform consultation topics and questions.

8. This consultation provides an opportunity to gather the views of a wide range of individuals and organisations on what matters when it comes to prevention, care, support and equalities in long term conditions. This might be for yourself, someone you care for informally, for people you care for professionally or otherwise represent, whether on a professional or voluntary basis. We welcome your participation.

9. As well as this consultation, we have asked questions on long term conditions as part of Citizen Panel 15. The Citizens' Panel aims to capture and reflect the views of the Scottish public. It brings together the views of around 1,000 members of the public, asking their opinion on different health and social care issues.

Long term conditions – definitions

10. Various terminology is used to describe long term health conditions. This includes ‘chronic diseases’, ‘noncommunicable diseases’ and ‘long term conditions’. For this consultation ‘long term conditions’ means any physical illness or mental illness expected to last a year or more. We know many people live with physical illness and its psychological effects and/or a mental illness and want to consider all aspects in developing a policy response.

11. Long term conditions:

• Have complex and multiple causes;
• May affect people either as a single condition or a comorbidity (one of multiple conditions);
• Usually have a gradual onset, although they can have sudden onset and acute stages;
• Occur across the lifecycle, although they often become more prevalent with older age;
• Develop 10-15 years earlier in more socio-economically deprived groups, impacting on healthy life expectancy^[3];
• Can compromise people’s quality of life and create limitations and disability;
• Are long term and persistent, and often lead to a gradual deterioration of health and loss of independence; and
• While not usually immediately life threatening, they are the most common and leading cause of premature mortality.^[4]

12. This is consistent with the definition of noncommunicable diseases^[5] used by the World Health Organisation (WHO), without referring to specific disease groups.

Long term conditions in Scotland

13. There is a range of estimates around the percentage of people living with a long term condition in Scotland. The most recent Scottish Health Survey reports that around 38% of people in Scotland are living with at least one long term condition.

14. In Scotland’s 2022 census, 21.4% reported a long term illness, disease or condition, up from 18.7% in 2011.^[6]

15. Long term conditions are the leading cause of illness, disability and death in Scotland. The burden of disease is significant and growing, both for people living with long term conditions and our whole population. ‘Burden of disease’ combines the number of years of life lost to disease with the number of years lived with disability because of the disease. Despite a projected decline in the population over the next 20 years, the disease burden is forecast to increase by 21%, with the largest increases coming from long term conditions^[7]. We need to keep our approach to long term conditions under review so we can respond to this changing context and recognise opportunities for improvement. This includes prevention, care and support throughout people’s lives, and strengthening our whole healthcare system.

16. The prevalence of long term conditions tends to increase with age, with a higher prevalence seen in older age groups. Additionally, the number of people with multiple long term conditions is rising, reflecting an ageing population and better management of chronic illness, meaning that people are living longer. For people living in the most socio-economically disadvantaged circumstances the onset of long term conditions can occur 10-15 years earlier. Within this population, minority ethnic communities are more likely to suffer poorer health outcomes, be affected disproportionately by socio-economic inequality, and also discrimination and other structural drivers of racism.

Wider policy context

17. On 27 January 2025, the First Minister set out an approach for reform and renewal to make people’s experience of the NHS in Scotland better than it is today, centred on actions to deliver a more accessible, person-centred NHS. To deliver this, Scottish Government is working with health boards, local government, Health and Social Care Partnerships, the Scottish Ambulance Service and NHS 24 to ensure our health service is the best it can possibly be. This work will focus on reducing immediate pressures across the NHS, shifting the balance of care to the community and using innovation to improve access to care. Our work on long term conditions will be both informed by and contribute to the work on reform and renewal of the NHS.

18. Audit Scotland’s report on the NHS in Scotland in 2023 described the national policy context in which the NHS operates as ‘complex’, which can hinder NHS boards’ ability to deliver reform. The need for focus is reiterated in the 2024 report, which calls for the Scottish Government to make ‘difficult choices’ around the level and types of services provided. In reviewing and rationalising our policy commitments, our work will contribute to addressing these concerns to provide focus.

19. We also know through Citizens’ Panel 14 that 98% of people consider it important that NHS Scotland makes better use of its resources, reduce waste and potential harm with 96% of people agreeing that the NHS should prioritise making best use of its resources to deliver care that matters.

20. Work is already underway to progress reform across all portfolios within Scottish Government to ensure long term sustainability, reduce health inequalities, further harness the benefits of digital technology, and improve population health outcomes in Scotland.

Domains of healthcare quality

21. The internationally recognised domains of healthcare quality, set out as aims by the Institute of Medicine in 2001, and incorporated into the Healthcare Quality Strategy for NHS Scotland in 2010^[8] ,are that healthcare needs to be: person-centred, safe, effective, efficient, equitable and timely. These quality dimensions put people at the heart of our NHS, build on the value of the people working in and with the NHS, and contribute to measurable improvement in the aspects of care that people with long term conditions, their families, carers, and those providing healthcare services see as important. 

22. Much has been achieved across all domains of healthcare quality with existing condition-specific policies through our collaborative working with NHS Boards, professionals, people with lived experience and the third sector. If we consider the six dimensions of healthcare quality, examples of achievements delivered through our policies are: 

• Person-centred – development of a transition guide for respiratory conditions; creation of a national learning toolkit and knowledge hub for Chronic Pain.
• Safe – 100% of women with epilepsy in NHS Greater Glasgow and Clyde offered specialist appointment (due to establishment of the Scottish Epilepsy Register); patient safety measures for diabetes developed (ongoing – with Healthcare Improvement Scotland).
• Effective – increased access to thrombectomy services; establishment of heart disease audit for planning; Learn about ME (Myalgic Encephalomyelitis) education model accessed by 1400 healthcare professionals; Out of Hospital Cardiac Arrest survival rate doubled from 1 in 20 to 1 in 10;
• Efficient – National Onboarding Team for diabetes technology developed; verifiable measures of rehabilitation developed for stroke rehab services; clinical guidelines developed for virtual appointments for neurological conditions.
• Equitable – Information provided in 19 languages and accessible formats on Long Covid; establishment of a national diabetes technology roll out programme to provide hybrid closed loop systems to any child or young person who wishes to use it.
• Timely – increased bystander CPR rates; establishment of CVD (cardiovascular disease) Risk Factors Programme to improve prevention, earlier identification and management of risk factors; training in migraines with NHS Grampian community pharmacy staff improved confidence levels facilitating more timely access to treatment. 

Long term conditions - case for change

23. The Scottish Government does not currently have a unified clinical policy approach to improving quality of care and support for long term conditions. This is despite the outcomes we seek being broadly the same regardless of condition: early identification and action to prevent conditions becoming chronic wherever possible; effective, safe and person-centred care; improved service delivery; implementation of Realistic Medicine^[9]; best use of clinical evidence; and health literacy.

24. Our current policy approach is condition-specific, with published strategies, frameworks, plans and accompanying funding that do not join up actions or prioritise according to burden of disease or impact. Whilst much has been achieved, in terms of clinical guidelines, patient and clinician information and education and service delivery, resources are not allocated as impactfully as they could be. Conditions that are major contributors to the burden of disease, but which happen not to have a strategy, receive less resource than conditions which have a framework or action plan. For example, there is no dedicated funding or active policy development for care for kidney disease, but there is for diabetes, which is joint tenth with kidney disease in burden of disease data. However, continuing to add to the list of conditions with dedicated strategies and/or action plans is not a viable way forward due to finite resources and places an additional burden on NHS Boards and other delivery partners. We need to efficiently and impactfully allocate our finite resources on long term conditions.

25. The Scottish Government has been undertaking policy work to address the challenges presented by long term conditions for many years. This is a broad topic covering multiple areas of health.

26. Whilst significant condition-specific progress has been made through policy working for some long term conditions, individual disease approaches do not give rise to improvements that could benefit all people with long term conditions. They are also not well placed to address the needs of people who have multiple long term conditions, estimated to now be one in four^[10] people. Some conditions, such as kidney disease and gastrointestinal disease, cause significant burden of disease, but are not covered by existing condition-specific policy approaches.

27. There is a role for Scottish Government policy to support the needs of all people living with long term conditions. However, whilst the burden of disease is growing, public finances are increasingly challenged. It is more equitable and more efficient to recognise the overarching high-level principles that could apply to all long term conditions as well as targeted actions on specific conditions.

28. We recognise that many people living with long term conditions will require access to the same types of care and support such as physiotherapy or ongoing monitoring of their condition. We want to ensure equitable and sustainable access to those services whilst also providing services specific to each condition where required. This approach would also recognise the challenges of those living with multiple long term conditions and look at ways to improve co-ordination of care.

29. We want to build on the good work we have already done on existing plans with our partners and continue to work together to achieve better outcomes for patients. Insights from work delivered through the policies listed above will help inform an integrated approach, alongside the insights gained from your responses to this consultation.

Improvement opportunities for a new framework

30. We are now reviewing our policy approach to explore the development of cross-cutting actions for long term conditions where there are common healthcare quality aims for these which could benefit people with all long term conditions. At the same time, we recognise that there are ongoing contexts in which improvement work required will be highly specific to individual conditions. Our intention is to explore ways in which a balance between cross-cutting and condition-specific work could be sustainably achieved.

31. In our exploratory work we have analysed our existing commitments within condition-specific strategies as well as approaches to long term conditions elsewhere in the world. Our existing commitments were evenly distributed across ‘condition-specific’ and ‘non condition-specific' and numbered more than 150. The large number of commitments presents challenges in terms of how realistic it is for the health system to deliver them.

32. Analysis revealed recurring themes across these commitments, which were ranked by their main theme. 

33. The top five main themes in the commitments were: access to care; data; self-management & patient information; clinician information/education and prevention & early intervention.  Areas of work delivered within these include:

• Access to care. Improvement work such as increased flexibility of care (e.g. out-of-hours, online); work on national guidelines and referral pathways; improving access to technologies and development of new more interactive services such as the Digital Front Door ; pilots for initiatives to improve capacity; increasing equity of access through the reduction of unwarranted variation and facilitating closer health board and third sector working to identify opportunities for collaborative care. Access covers various stages depending on identified improvement needs: diagnosis, specialist care, rehabilitation, psychological support and long term management.
• Data. Work to improve national clinical, service and patient-reported outcome and experience data (PROMS, PREMS) to help with service and workforce planning, enhancing clinical care, facilitating research and contributing to a reduction in unwarranted variation at regional and national level. Work variously covers the optimisation and harnessing of additional potential of existing data, as well as development of new data sets and enabling the more effective sharing of health and care data to deliver new approaches and insights as set out in Scotland’s health and social care data strategy.
• Self-management and patient information. Identification, development and prioritisation of issues for awareness including symptoms, how to access support, your rights and future care planning; provision of self-management information and support through digital platforms such as NHS Inform, mobile apps and other tools to help support people to manage their own condition.
• Clinician information/education. Increasing healthcare professional knowledge of conditions, their impact, management, available services and infrastructure via training, education and online resources (e.g. knowledge hubs, toolkits); contributing to the development of national standards for management of conditions, clinical guidelines and referral guidelines to reduce unwarranted variation and support the delivery of safe, effective and person-centred care.
• Prevention and early intervention. Establishing and implementing approaches to support the prevention and early detection of diseases; preventing conditions from deteriorating; management of risk factors.

34. Valuable work in all these areas has been delivered through the combined efforts of the third sector, NHS boards, people with lived experience, the wider public sector and the Scottish Government.

35. Further analysis revealed that, of the 156 commitments, 52% were non-condition specific. That is to say they would be desirable commitments for any condition (such as clinical guidelines being informed by the latest evidence). 48% were condition-specific i.e. relevant only to that condition (such as door-to-needle time for stroke).  

36. Looking across the common themes, and considering the large proportion of non-condition specific commitments, there is an opportunity to review whether more joins could be made in work across conditions and to benefit people with a wider range of long term conditions through an integrated long term conditions framework.

37. Analysis by Briggs et al (2019)^[11] of 44 non-communicable disease (NCD) strategies in 30 Organisation for Economic Co-operation and Development (OECD) countries argued for the integration of work across diseases on account both of common risk factors and co-occurrence/multimorbidity:

‘Since NCDs often co-occur, particularly in the context of ageing, and share common behavioural and environmental risk factors, system reform for NCDs should typically be approached in an integrated manner at both system and service levels, rather than in disease-specific siloes’.

38. A further review of eighteen national strategies in eight countries for preventing and managing NCDs (Gassner et al, 2022)^[12] identified the following themes in descending order of frequency (incidence in brackets): 

1. Improving health in general (15) 

2. Prevention of NCDs (13) 

3. Self-management, empowerment, health literacy (8) 

4. Reduction of health inequalities (8) 

5. Evidence, data (7) 

6. Cooperation, collaboration (6) 

7. Integrated care, coordinated services, management of chronic conditions (5) 

39. There are clear overlaps with Scottish Government condition-specific policy commitments when it comes to items 2, 3 and 5 – prevention, self-management and data. However, item 4, on reduction of health inequalities, is an area flagged for further development in future approaches. Further, the need for integrated care and coordinated services, item 7, is something we have often heard from people with lived experience as being extremely valuable. 

40. Our policy commitments around specific long term conditions can now be revised in a way that benefits more people with long term conditions, given that many of these have common themes regardless of condition. These centre on access to care and education, as well as healthcare quality dimensions, such as safe, effective and person-centred care. A series of time-limited action plans supporting the framework could comprise both cross-cutting commitments and condition-specific commitments. An indicative example is given below. Commitments featured are for illustrative purposes only.

Indicative action plan example

The action plan will have both cross cutting commitments as well as condition specific commitments.

Cross cutting commitments could include (as examples):

• Access to Care – outreach nurses to review long term conditions for those with multimorbidity;
• Data – develop PROMS/PREMS measures to use across all long term conditions;
• Self Management and Patient Information – rollout of self management workbook across all long term conditions;
• Clinician Information and Education – develop online consultation guidelines;
• Prevention and Early Intervention – awareness and prevention programme for risk factors;

Total number of commitments to be confirmed

41. We propose developing a long term conditions framework. It will:

• Be integrated with wider policies such as prevention, inequalities, NHS reform, Realistic Medicine, Value Based Health and Care, digital and data and ensures the voices of people with long term conditions are reflected in those
• Incorporate the domains of healthcare quality as the overarching principles we work to in improving healthcare for long term conditions
• Identify cross cutting themes derived from the consultation and further analysis which are applicable across multiple long term conditions
• Be supported by a rolling programme of time limited action plans comprising both cross-cutting actions and focussed condition-specific actions.

42. As we move forwards, our new standard approach to policy for long term conditions will be cross-cutting, rather than condition-specific, to allow people with a wider range of long term conditions, and people with multiple long term conditions, to also benefit from improvement work. This will be achieved by working in a more joined-up way across conditions, applying insights and best practice to benefit care and support.

43. We recognise that at times, highly specific condition-specific improvement work will also need to be taken forwards alongside cross-cutting work, and will make provision for this through an evidence-based prioritisation process. Examples of condition-specific work identified previously include improving door to needle time for stroke and rollout of closed loop technology for diabetes. Actions from existing strategies and frameworks which have still be to be taken forward will now be considered as part of our new framework and action plan and our new process for prioritising improvements.