Chronic pain service delivery - draft framework: consultation

Aims of the Framework

Aim A: Person-centred care

Ensure access to appropriate information and support based on an individual's needs

35. Feedback from services and people with chronic pain indicate that challenges remain in ensuring consistent access to appropriate information, advice, treatment and support at the point where it could be most effective for an individual's needs.

36. You have told us that a priority must be to improve access to high quality care and support that is person-centred. What this care and support consists of will vary greatly depending on an individual's experience of chronic pain and how it impacts their life, with needs often varying over time.

37. Service delivery is also influenced by a lack of understanding about chronic pain and its impact amongst the general public and many health and care professionals. Our work to develop the Framework has revealed confusion about how pain is managed and what support is offered by different services across Scotland. This contributes to delays in help seeking and access to effective care.

Understanding chronic pain and how to manage its impact

38. In Scotland, NHS Inform currently hosts information on chronic pain and its potential causes, prevalence and treatment options. There is also a comprehensive self-help guide, advice on the impact of pain on mental health and links to organisations who provide support for people with chronic pain.

39. However, we are aware that people may encounter barriers to understanding and accessing health information. The Scottish Government has published the Making it Easier – Scotland's Health Literacy Action Plan to ensure everyone has the skills, confidence, knowledge and understanding to navigate complex health and social care systems.

Case Study 1: The Pain Navigator Tool.

Self-Management

40. People experiencing chronic pain are often confident in managing pain and its impact on their everyday life by themselves. Many people with chronic pain may also benefit from additional support to manage their own health as part of a set of approaches often called supported self-management. This may involve accessing information from healthcare professionals, third sector or other trusted sources to understand what chronic pain is and developing their own tools, skills and approach to managing their condition and its impact on their daily life.

41. While individuals with chronic pain should be in control of when and how they access self-management, there is also a role for health services to support and empower people to manage their condition. The ALISS (A Local Information System for Scotland) Programme is funded by the Scottish Government and delivered by the Health and Social Care Alliance Scotland (the ALLIANCE). This national platform enables people to search for support options in their area. While options and opportunities to support pain management exist at present on the platform, more work is needed to ensure greater knowledge, signposting and use of this resource among healthcare professionals and people with chronic pain themselves. Additionally, work is required to ensure a coordinated approach to identifying and facilitating access to local and national self-management resources and opportunities.

Commitment 1

We will improve the quality and consistency of information on chronic pain and make it more easily accessible. We will empower people to understand their condition and better manage its impact on their physical and mental wellbeing.

Mental Health

42. Living with chronic pain can have a detrimental impact on a person's mental health, and in turn this can have an effect on how they perceive their pain and respond to strategies to manage their condition. It is well established that evidence-based psychological interventions can play a key role in treatment for many people with chronic pain and support to identify and address poor mental health is a component of most pain management programmes. In line with a person-centred approach to care, wellbeing and mental health should be discussed as part of any consultation for chronic pain.

43. Psychological support to manage chronic pain is an element of services provided across Scotland including those delivered in hospital settings as part of a wider multidisciplinary team approach to chronic pain management. However people with chronic pain have told us there is variation and inconsistent access to mental health services and support.

44. The Scottish Government's Mental Health Strategy has set out actions which seek to prevent and treat mental health problems through preventative and early intervention approaches, improved access to treatment and improving the physical wellbeing of people with poor mental health.

45. We will ensure that the impact of chronic pain is recognised in the development of mental health pathways and service improvement activities in order to improve more timely and appropriate access to psychological care for people with chronic pain.

Case Study 2: Digital access to mental health support for people with chronic pain.

Aim B: Timely Access To Care

Support people to access the care they need when they need it

46. You have told us that a priority must be to improve timely access to high quality care and support wherever people live in Scotland. This is important because earlier intervention can prevent or limit the impact of chronic pain on people's quality of life and day to day activities.

47. We know there is variation in the way people currently access services for chronic pain across Scotland, especially in community and primary care settings. While many of these differences reflect local service configuration and needs, action is needed to reduce the barriers people with chronic pain can face navigating the health system and ensure everyone has the support and opportunity to be an equal partner in their own care.

Local healthcare access and support

48. People with chronic pain told us that they would welcome more information on services available in their own area. Improving people's understanding of the support provided by their local health services is an important aspect of enabling people to access appropriate care at the right time, in the right place by the right professional. It will be a priority of implementing this Framework to identify and address the variation in local provision and access to services and support for people with chronic pain.

49. Nationally there are a number of developments underway to increase the support available in local areas. The implementation of the 2018 GP contract aims to improve access to other health and care services and allied health professionals (AHPs). While roll-out of these roles is still underway, they may include physiotherapists for musculoskeletal pain, pharmacists for pain medication reviews or occupational therapists to help manage the functional impact of pain and other long-term conditions.

Case study 3: Local multidisciplinary pain management services in East Lothian.

50. AHP-led musculoskeletal (MSK) services make a vital contribution to helping people become and stay active, preventing chronic pain and reducing the need for specialist orthopaedic referral. In Scotland, people experiencing MSK pain can self-refer to physiotherapy services for assessment through their local NHS Board with access to advice and signposting to help manage painful symptoms. Work is underway nationally to recruit more MSK Practitioners working in primary care settings to enable people with persistent musculoskeletal pain to be seen by a physiotherapist at the earliest, and most appropriate opportunity.

Case Study 4: New models of support for people with chronic pain.

Community support

51. The importance of greater coordination and connection between NHS services and community support is reflected in the concept of 'social prescribing', such as walking group projects in the community. Availability and access to a range of non-clinical local support has been demonstrated to provide benefits for a number of issues experienced by people with long-term conditions.^[19]

Case Study 5: Local opportunities to become physically active.

52. Charities play a vital role in supporting people with chronic pain in Scotland, with a range of groups focused on providing support for the condition itself and its impact on quality of life. These groups provide support at the national and local level, including information and helpline resources, peer-led activities, supported self-management and other relevant advice e.g. welfare and employment support. In many cases, they work in formal partnership with individual Health Boards and Local Authorities to enhance access and provision of community-based support for people with chronic pain. However, we know that currently there is variation in how this expertise is accessed across Scotland. It is intended that the common vision set out by this Framework will enhance collaboration between public service providers and local and national charities to deliver more consistent access to community support for people with chronic pain.

53. In addition, the increased presence of Community Links Workers (CLWs) in GP practices also provides an opportunity for people with chronic pain to access support for other issues which may be impacting on quality of life and contributing to the impact of their condition, for example housing, welfare rights, employment issues or social isolation. Resources have also been developed to support GP practices and their teams to improve access to care and information.

Improving referral to services

54. The needs of people with chronic pain may fluctuate over time, including for people undergoing treatment for another condition who may be experiencing pain that cannot be appropriately managed within that service. Health Boards are responsible for the development and management of referral guidelines for their services to enable people to get the right care from the right professional in the right location at the right time.

55. We know there is variation in chronic pain service configuration, provision and referral criteria across Scotland. As a priority we will work with services, charities and people affected by chronic pain to identify opportunities to introduce national referral pathways where it is appropriate, to improve the experience for people with chronic pain and ensure more timely access to appropriate care. This would place importance on collaborative working between health and care professionals, improving access to specialist advice, and the appropriateness of referrals. This would deliver better outcomes for people with chronic pain by promoting more appropriate management, including identifying opportunities for earlier intervention and support.

Commitment 2

We will support people to access the right care, in the right place, at the right time by working with NHS Boards to improve how they plan and deliver care for people with chronic pain. This includes increased coordination across community-based, GP and hospital services.

Highly specialised residential care for chronic pain

56. The existing Scottish Service Model includes the requirement for 'Level 4' or highly specialised (or tertiary) services for people with chronic pain. Since 2015 this has been provided by the Scottish National Residential Pain Management Programme (SNRPMP) hosted by NHS Greater Glasgow and Clyde. The Programme has to date provided support for people with chronic pain to develop self-management skills via a three week residential interdisciplinary pain management programme.

57. Following the restrictions introduced as a result of the COVID-19 pandemic, face-to-face delivery was paused while arrangements were made to develop a 'virtual' programme. Consideration is being given to how the service may evolve in future to support implementation of the Framework and its priorities.

Digital services

58. The response to the COVID-19 pandemic has substantially increased the use of technology such as the NHS Near Me platform to deliver individual consultations and other platforms for group work for chronic pain. The Scottish Government's refreshed Digital Health and Care Strategy has been updated to address the need for the sector to be better equipped with the skills, resources and support to implement advances in digital care. At the same time, it recognises the need to ensure that people have a choice in how they access appointments. While people with chronic pain can benefit from digital services, it is important to acknowledge there are circumstances where these will not be appropriate.

59. Through the implementation of this Framework we intend to increase and improve the opportunities for people with chronic pain to access the support they need at the point when it will be most effective for them. It is intended that these Commitments will set the groundwork for better outcomes for people with chronic pain, from provision of accurate information and advice, to more timely and appropriate care from NHS services in all settings.

Commitment 3

We will improve the options people have in accessing chronic pain services, including digital technology where appropriate.

Aim C: Safe, Effective Treatments

Ensure people have choice of effective treatments

60. Our aim is to improve timely and equitable access to a range of evidence-based treatments through a person-centred approach.

61. There are a range of interventions that can support people with chronic pain to manage their condition and its wider impact on their quality of life. For some people the underlying cause of their pain can be readily addressed; for example, joint replacement surgery may be suitable for some people with osteoarthritis.

62. For most people with longer-term chronic pain, effective 'treatment' usually involves identifying and testing a range of different options that manage and minimise the impact of their pain on everyday life. Our research tells us that there are often barriers and delays to agree an effective pain management plan, frustrated by the variation in provision across Scotland.

63. In developing this Framework, people with chronic pain have highlighted a number of treatment-related issues, including inconsistencies in the availability of certain interventions, delays or changes in how or when treatment is provided, and in some cases a lack of clear explanation about alterations to treatment plans with a lack of communication or involvement. This Framework has already highlighted the commitments and actions we will take to empower people and improve shared decision-making conversations about an individual's care.

64. We will work with people with chronic pain and healthcare professionals to identify opportunities to improve their knowledge of what treatments are available for chronic pain and when they may be appropriate.

Commitment 4

We will support people with chronic pain and healthcare professionals to better understand and agree effective treatment options to manage pain.

Implementing Clinical Guidelines

65. In Scotland, the Scottish Intercollegiate Guidelines Network (SIGN) is responsible for providing national guidance and advice with the aim of improving outcomes for people using health and care services. The SIGN guideline on management of chronic pain sets out clear recommendations on best practice to support non-specialist clinicians and people with chronic pain in making decisions on care. This includes evaluation of complementary and alternative therapies, and where there is good evidence for their use they may be recommended as part of clinical guidance. However, health Boards are responsible for determining local access to treatment, including complementary therapies.

66. As a range of different health and care professionals may be involved in providing support to people with chronic pain, it is challenging to ensure there is consistent knowledge and implementation of best practice across Scotland. Clinicians are responsible for discussing and agreeing appropriate courses of action with the individual, and it is clear that professionals and patients alike would benefit from greater support to ensure a more consistent approach to pain management decision-making across Scotland.

67. There is also variation in the treatments and interventions offered in specialist pain management services across Scotland. Some Health Boards offer interventions that provide temporary or (comparatively) short-lasting pain relief, meaning repeated treatment is required in order to support the patient in managing their condition. People with chronic pain undergoing such procedures have told us that they experience delays or changes to their expected treatment regime and that these issues were exacerbated over the last year due to the impact of the COVID-19 pandemic. It should be noted that not all specialist pain services in Scotland offer all of these treatments, citing a lack of evidence for their longer-term benefit for people with chronic pain.

68. Given the shorter-term treatment effect of many of these interventions, it is important to ensure they are provided alongside other elements of care that the individual with chronic pain requires in order to support them to develop a more sustainable approach to managing their condition and its impact on their life.

69. The inconsistencies in the availability of certain interventions suggests there is a need to debate and agree a national approach to specialised pain management interventions in Scotland to enable people to have a more consistent experience and better outcomes.

Commitment 5

We will ensure people have more consistent access to effective treatment options wherever they live in Scotland.

Drug-based treatments

70. A wide range of medication is prescribed to help manage pain, including opioids and gabapentinoids. While there is good evidence for the use of high-strength pain medications for people with acute or cancer-related chronic pain, there is less evidence on their use in the long-term treatment of chronic pain.

71. The Scottish Government has published guidance to promote more effective prescribing for the care of people with chronic pain. Anyone prescribing medication for a person with chronic pain must consider how they can support the person to gain knowledge and understanding of other non-pharmaceutical approaches including self-management as part of a longer-term strategy to manage the impact of their condition.

72. Medication is often therefore just one element of a wider chronic pain management plan, which should be developed in partnership with the individual to ensure expectations, risks and side-effects are fully explored and understood. This should be regularly reviewed with the patient with both the individual and prescriber agreeing when treatment might be stopped or continued, depending on how effective it proves to be for their specific situation.

Case Study 6: The Scottish approach to pharmacological management of chronic pain.

Case Study 7: The role of community pharmacies in supporting people with chronic pain.

73. We will also take action to promote information and guidance about commonly prescribed pain medication to improve understanding of their safe use. This will help to ensure that people with chronic pain can make more informed and effective decisions about medications and interventions as part of a wider management plan to improve their quality of life and wellbeing.

Aim D: Improving Quality of Life and Wellbeing

Invest in training, data and research to improve care and support

Training and Support for Healthcare Professionals

74. People with lived experience of chronic pain have highlighted that they often feel that healthcare professionals do not appear to fully understand or acknowledge the impact of chronic pain, and a need for more information about effective management options.

75. The frequent presence of chronic pain alongside other health and quality of life issues, and the fact that earlier identification often leads to better outcomes, underscores the importance of increasing knowledge of the condition and its management amongst the wider health and care workforce.

Supporting primary care teams to manage chronic pain

76. The majority of people with chronic pain who actively seek support for their condition will initially attend their local GP service. Despite the high rate of chronic pain presentation in primary care, estimated to be around 1 in 5 GP appointments, many report they do not feel confident in managing chronic pain.^[20]

77. Barriers to effective consultation in primary care have been reported as short appointment slots, the complexity of additional issues that have a bearing on pain and the need to build a trusted relationship. These factors highlight the importance of ensuring best practice in person-centred care is a core element of any chronic pain training for primary healthcare professionals whilst balancing this with timely access issues currently faced in primary care and elsewhere in the system.

78. Further formal and informal training and guidance for primary care professionals is available from local specialist pain services in most Health Boards. Strengthening the links between primary and secondary care has previously been identified as a key opportunity to improve the quality of support for people with chronic pain. In support of this, the Scottish Government recently funded a project which provided specialist pain management practitioners in primary care settings. This, and other improvement activities to enhance collaboration between specialist and non-specialist healthcare professionals will inform future development of training opportunities to improve care for people with chronic pain.

Case Study 8: The role of Allied Healthcare Professionals in managing chronic pain.

Specialist chronic pain workforce

79. In Scotland the lead clinician role in specialist pain management services is often a consultant anaesthetist with the wider team comprising nurses, AHPs, psychologists, pharmacists and other disciplines.

80. The Scottish Government has carried out work to understand issues facing the specialist pain workforce in Scotland. This highlighted that most Health Boards were experiencing difficulties in recruitment and retention in their pain services despite the overall wider trend of an increase in medical trainees and healthcare professionals more generally.

81. The evolving nature of chronic pain management and specialist services provides an opportunity to consider new approaches to workforce and staffing, for example how other professions could be involved in clinical leadership of specialist pain management services. Specialist nurses such as Clinical Nurse Specialists and Nurse Practitioners are already part of pain services and work is underway to improve education and training through Advanced Nursing Practice (ANP).

Case Study 9: Promoting pain education for all trainees.

82. We will work with healthcare professionals at all levels to identify their training and resourcing needs so they are empowered to provide improved care for people with chronic pain. This may include both ongoing and pre-registration education about the impact of chronic pain and how it is managed. We will work with NHS Education Scotland (NES) and Scottish Government workforce policy teams in order to identify opportunities to promote understanding and up-skilling in pain management across disciplines and training pathways to improve access to better quality care and treatment from healthcare services.

Commitment 6

We will work with NHS Education for Scotland, professional bodies and partners to improve training and education on management of chronic pain.

Commitment 7

We will establish and support health and care professional networks to share best practice in pain management at local and national levels.

Using Data to Improve Services and Support

83. In order to improve health and care services, it is essential to understand who are the people using them, how are they being delivered, and what difference they are actually making to people's care. It is vital that we continue to use data to understand the impact of chronic pain as a means to inform improvement in the quality of care and support.

84. People living with chronic pain have rated 'opportunities to share your experiences and feedback to improve your local services' as very important or important (80% agree – Alliance Survey 2021). This provides the opportunity for active involvement in how the care they access is delivered and might be improved to better meet the needs of local populations.

Existing sources of data on chronic pain

85. Currently, there is regular collection of chronic pain service data, and Scotland is the only UK nation where waiting times for consultant-led first outpatient appointments in specialist pain management services and pain psychology clinics (where provided) are routinely reported. The experience of people with chronic pain of local healthcare including in GP practices is also collected as part of the Scottish Government's Health and Care Experience Survey.

Case Study 10: The role of Public Health Scotland in data collection and reporting.

86. In order to improve chronic pain data collection and reporting, the Scottish Government commissioned the development of a 'Core Minimum Dataset' (CMD) for chronic pain services. This work is intended to better understand the needs of people with chronic pain, the impact of the condition and the effectiveness of services or interventions to manage pain. Work is currently underway on how best to implement collection of these data in order to support future evaluations of services, treatments and patient outcomes and identify opportunities for improvement.

Exploring data on the wider needs of people with chronic pain

87. We know that every person's experience of chronic pain is unique, and in addition to the condition itself, research has demonstrated that there are other factors which can contribute to the impact of pain on people's health and wellbeing.

Case Study 11: Data on the quality of services for people with chronic pain.

88. The Scottish Health Survey provides information about the health, and factors relating to health, of people living in Scotland. The survey enables self-reporting about health in Scotland in order to help estimate the prevalence of different health conditions, understand associated risk factors, explore differences between regions and subgroups of the population and provide an opportunity to monitor trends in the population's health over time. The value of such nationally coordinated data collection on chronic pain has been demonstrated by similar surveys in England which have increased understanding of key issues relevant to improving support. They also have the potential to identify unmet need for pain management and support from those not currently accessing health services, or those attending services where data collection is less routine.

89. Through this Framework we will continue to work with health and care providers, researchers and people with chronic pain to develop how data is collected and used at all levels in order to inform meaningful and impactful change and improvement for people with chronic pain.

Commitment 8

We will support Health and Social Care Partnerships to improve how pain management support is planned and delivered locally by promoting more consistent use of performance and quality data.

Commitment 9

We will work with Public Health Scotland to increase national reporting and analysis of clinical and patient experience data to improve services for people with chronic pain.

Promoting Research and Best Practice

90. Our understanding of chronic pain continues to evolve as more evidence and research emerges about its causes, risk factors, impact and management. In turn, this evidence and best practice should be consistently shared to drive improvement in the services and support available for people with chronic pain to enhance their quality of life. We will work to ensure this quality improvement approach is supported as the aims and priorities in this Framework are implemented.

91. Research on chronic pain in Scotland is coordinated with the support of NHS Research Scotland in partnership with the Chief Scientist Office of the Scottish Government. Together they promote and support excellence in research to drive improvements in care, treatment and support. Recent research outputs have provided new insights into management of chronic pain, its impact on children and young people and the potential genetic components of the condition.

92. People with lived experience of chronic pain rated 'opportunities to engage with and participate in research in chronic pain' as very important or important (84% agree, Alliance Survey 2021). In recent years more opportunities have become available for people with lived experience to be involved in research studies, with meaningful involvement increasingly a requirement for grant funding. As this Framework is implemented we will work with the research community to build on the many examples of high-quality involvement of people with chronic pain in research and improvement projects across Scotland.

Defining best practice for chronic pain services

93. The Scottish Government has previously supported the development of Quality Performance Indicators (QPIs) for chronic pain services. These QPIs set out a comprehensive approach to monitoring the quality of pain services at all levels and align to the aims of this Framework in order to support reporting on progress. We will continue to work with the chronic pain community to further explore how such indicators can meaningfully contribute to improving pain management support across Scotland.

94. Through the development of this Framework, we have started a conversation with the chronic pain community to identify the outcomes that would make the greatest difference to people's quality of life. The Framework will take forward these priorities by working with people with lived experience, pain services, policymakers and local health and care planners to identify how we can start to measure both improvement in services and support and our progress towards these outcomes.

Commitment 10

We will develop and agree national standards for pain management services to improve care for people with chronic pain.

Commitment 11

We will support pain research in Scotland to develop improved care and treatment options for people with chronic pain.