Aim D: Improving quality of life and wellbeing
The fourth aim proposed in the draft Framework covers investment in training, data and research in order to improve care and support for patients who experience chronic pain. Six commitments are set out in support of this aim.
Aim D: Improving quality of life and wellbeing
Invest in training, data and research to improve care and support.
Question 14- Should this aim be a priority?
A substantial majority of respondents – 92% of those who answered the question – thought that Aim D should be a priority, while 4% thought it should not, and 4% said they did not know. All organisational respondents that answered the question took the view that Aim D should be a priority.
Training and support for healthcare professionals
The consultation paper notes that people with lived experience of chronic pain have reported feeling that healthcare professionals do not fully understand or acknowledge the impact of such pain, and that more information about effective management options is needed.
We will work with NHS Education for Scotland, professional bodies and partners to improve training and education on management of chronic pain.
Question 15. Should Commitment 6 be included in the Framework?
A substantial majority of respondents – 93% of those who answered the question – thought that Commitment 5 should be included in the Framework, while 5% thought it should not, and 2% said they did not know. All organisational respondents took the view that Commitment 6 should be included.
We will establish and support health and care professional networks to share best practice in pain management at local and national levels.
Question 16. Should Commitment 7 be included in the Framework?
A substantial majority of respondents – 96% of those who answered the question – thought that Commitment 7 should be included in the Framework, while 4% thought it should not. Among organisations, only one Representative Body respondent thought that Commitment 7 should not be included.
Question 17. Please explain your response to Questions 14, 15 and 16.
A total of 92 respondents made a comment at Question 17.
As noted above, there was a high level of support for Aim D being a priority, and for the inclusion of Commitments 6 and 7. General comments included that the approach is both essential and common sense and that it is difficult to see why anyone would oppose these commitments. A national approach to training and sharing of best practice was seen as important to ensure equity of access and consistency of services.
However, it also was argued that: Aim D is ill-defined and lacks detail; 'quality of life' and 'wellbeing' need to be defined; and that placing the training of healthcare professionals under 'improving quality of life' rather than 'improving services' suggests a level of dependency by patients on healthcare professionals. Additional concerns were raised with respect to funding and whether the commitments are achievable in the short to medium term.
Improving training and education on management of chronic pain
Respondents emphasised that healthcare professionals need up-to-date education on chronic pain including with respect to the side effects of medication and the alternatives to drugs. Some respondents expressed a view that not all professionals are sufficiently knowledgeable about chronic pain or do not understand the debilitating effects of living with ongoing pain, and there were calls for better training and support for both specialist and non-specialist staff. Some 'Individual' respondents described their own negative experiences or those of family members when seeking help for chronic pain including feeling their pain was not taken seriously, being told that nothing could be done to alleviate the pain, or being over-medicated. Related impacts on mental health were also reported.
It was suggested that patients need consistent information and advice with some respondents reporting that patients seeing several health professionals may be offered differing treatments or conflicting advice.
There were calls for training for healthcare students, with education and training about chronic pain and pain management embedded in undergraduate training and pre-registration programmes for all health professionals. It was also thought that there should be training for healthcare professionals in all disciplines, with some respondents suggesting a focus on the training of primary care healthcare professionals.
The importance of anaesthetic specialist involvement in pain services was also highlighted. As well as training for anaesthetists, it was suggested consideration should be given to training pathways for other medical professionals to allow them to take a role in leading services.
Other suggestions with respect to training included opportunities for: GPs; General Practice Clinical Pharmacists and Community Pharmacists; specialist nurses; physiotherapists; and social prescribers. It was noted that professions will have differing training needs and that the content of training will need to be tailored appropriately.
Education of patients in pain management was also highlighted, with a suggestion that providing in depth, accessible information about things people can do help themselves may be empowering. However, it was also argued that opportunities for self-management are limited and do not apply to many patients with multiple medical and psychological co-morbidities as well as pain.
Points on the nature of the training to be provided included that it should:
- Follow a multidisciplinary approach.
- Be experiential, interactive and applied and equally accessible to all healthcare professionals.
- Involve patients in both design and delivery of training or that patient feedback could be used to identify training opportunities.
- Include signposting to third sector organisations who can offer support.
Another issue highlighted for consideration was how education is implemented into practice, for example using supervision models.
There was a difference in views about who could or should provide training, with a 'Third sector' respondent suggesting that the third sector can deliver training and education of healthcare professionals, while a 'Representative Body' respondent argued that investing in internal teaching and training would be more sustainable in the long-term.
Specific suggestions with respect to strengthening the links between primary and secondary care included funded preceptorships for primary care clinicians who are keen to develop and enhance their training in the area of pain management and become a GP with a clinical extended role based in primary care. It was also reported that the Modernising Patient Pathways Programme (MPPP) is sponsoring small test of change projects to assess different models of care including a Scottish Pain Service Model Level 2.5 to improve access to specialist pain management expertise in primary care, and that two projects are testing out Consultant Outreach Pain Management to GP practices.
Sharing best practice at local and national levels
Although there was broad support for Commitment 7, some respondents expressed reservations in relation to the concept of best practice, including views that this has a top-down feel, or that what is considered 'best practice' in the NHS does not take account of scientific research or patient preference and feedback. It was also suggested that innovation should not be stifled by a top-down approach.
Several respondents commented on the value of professional networks in sharing learning including the benefits of both intra- and inter-professional networks, and networks between Health Boards. It was suggested that it may be helpful to consider communication methods within and between networks to contribute to the aims of the Framework and optimise best practice. However, it was also observed that existing networks are typically run by clinicians who lack time and capacity and that a paid administrator role would be helpful.
Examples of existing networks included:
- A Scottish Pain Pharmacists Network.
- A Chronic pain Highland network including not only the local chronic pain team but also primary and secondary care staff, patients with lived experience, and third sector and tertiary care representation.
Partnerships with organisations like the British Pain Society, The Faculty of Pain Medicine and educational institutions were highlighted as ways to help sharing data and research outcomes, and it was suggested that a national database for research and development could be included in the Framework.
It was also suggested that multi-professional pain conferencing and webinars based in Scotland could enhance collaboration and learning, and could include sharing and promoting effective training within and across professions and could also showcase projects such as MPPP projects.
Using Data to Improve Services and Support
The consultation paper outlines work with respect to existing sources of data on chronic pain and exploring data on the wider needs of people with chronic pain. It states the Scottish Government's intention, through the Framework, to 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.
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.
Question 18- Should Commitment 8 be included in the Framework?
A majority of respondents – 85% of those who answered the question – thought that Commitment 8 should be included in the Framework, while 5% thought it should not and 11% did not know. All organisations that answered the question thought that Commitment 8 should be included.
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.
Question 19- Should Commitment 9 be included in the Framework?
A substantial majority of respondents – 91% of those who answered the question – thought that Commitment 9 should be included in the Framework, while 4% thought it should not and 5% did not know. All organisations that answered the question thought that Commitment 9 should be included.
Question 20- Please explain your response to Questions 18 and 19.
A total of 89 respondents made a comment at Question 20.
As noted above, there was a high level of support for inclusion of both Commitments 8 and 9. General comments included that a data driven approach makes sense, and that informative data is essential to target and deliver support. An NHS respondent noted that the absence of clear and accurate data means that, at present, it is not possible to state accurately how available services match national need, to evaluate the effectiveness of services, compare services, or evaluate improvement initiatives.
However, some reservations were expressed, including around the capacity of services to collect data, how that data might be used, and that some existing data is not published. It was also suggested that clinical trials and studies are another important source of data to be used to improve knowledge, treatment and practice.
More consistent use of performance and quality data
With respect to the collection of data, the point raised most frequently was that this must include patient experience feedback. It was suggested that this type of feedback has largely been ignored in the past but that patient experience data should drive clinical governance/audit of services.
It was argued that critical questions must be asked about the impact of treatment on the patient in the context of their daily lives, and not simply on meeting targets. A further point raised was that chronic pain is currently under-reported as some people are left to manage their conditions by themselves, and that the data collected should not be confined to the views and experiences of those who are successfully receiving care. Community pharmacies were suggested as one option for collecting the views of patients with chronic pain.
It was also argued that:
- Data must reflect multi-professional services and not just consultant activity.
- Improved data collection around diagnostic coding, medication dosing and interventional outcomes in both primary and secondary care will be key to optimising the delivery and monitoring of chronic pain.
Setting clear aims and objectives around data collection was thought to be important, including:
- What data would be gathered and why it is required. It was argued that data collection should be informed by clear research questions and ideas on how it would lead to improvement in practice.
- Which organisations would be asked to contribute.
- How data would be analysed, including whether it would be anonymised and who would have access to either raw data or research results.
- Making the agenda a priority for HSCPs to ensure they engage with it.
A focus on nationally agreed parameters for data capture was highlighted as important, both to provide consistent data for assessing performance and quality and to allow benchmarking of performance across Health Boards. However, it was also noted that, at present, data collection differs across Health Boards.
Several NHS respondents commented on the value of the proposed Core Minimum Dataset referenced in the consultation paper with one reporting that that its utility has been demonstrated at local level, and recommending that it should contribute to ongoing pain service reporting and analysis across Scotland. It was seen as a positive step in providing data that doesn't only concentrate on a single element such as waiting times and there was a suggestion that agencies with relevant data experience could develop a national picture of care and services.
Respondents also referenced potential sources of data including:
- The 2022 Scottish Health Survey.
- Health Data Research UK's new 'Alleviate' pain data hub, which could provide a valuable resource for large population-based studies relating to chronic pain.
- A National In-healthcare chronic pain platform designed and piloted by NHS Highland. This online patient questionnaire, which collects data on criteria such as mood, pain, function and disability to aid vetting of referral could be replicated across all Health Boards.
With respect to the section headed 'Existing sources of data on chronic pain' it was suggested that, rather than focusing on waiting times, paragraph 85 might explain other chronic pain service data that is collected. It could also include a reference to getting data from Third Sector organisations to give a more rounded picture of people's experiences.
A small number of points were made in relation to the wording of Commitment 8 including that:
- 'Supporting Health and Social Care Partnerships to improve how pain management support is planned and delivered locally' needs to have a more substantial statement behind it.
- What is meant by 'pain management support' is unclear. 'Pain management services' was suggested as an alternative that incorporates self-help, guided help, community and primary care and well as specialist services.
Increased national reporting and analysis
Comments on reporting of data included that this must be honest and transparent to be useful in holding services and authorities to account and that data can be gathered and reported but must also be shared to drive improvement. It was also noted that in formal reporting of data, pain is often seen as a secondary effect and that data on pain as a key symptom can help understanding of how an individual is affected. While identifying and interrogating relevant data was seen as important for evaluating performance and supporting consistency, it was also argued that the disparity of treatments available across Health Boards will make it difficult to achieve a national picture. To achieve a unified approach to the use of data, it was suggested there should be explicit guidance for Health Boards that can be modified according to the resources available. A lack of service capacity to analyse and report routine data was identified as a potentially significant barrier, and it was suggested that research coordination roles might be developed to support the Framework and its implementation.
Other points on the uses of data included:
- That inclusion of data about chronic pain in public health data at population level, will make the scale and impact of chronic pain in Scotland more fully visible to policy makers.
- As well as helping in the design and planning of chronic pain services, access to comparative data on implementation of the Framework can assist advocacy organisations to make a case concerning gaps in service provision.
- Data that can easily be used to present key information to GP practices and clusters could be particularly powerful, especially when their performance is compared with other practices or localities.
Promoting Research and Best Practice
We will develop and agree national standards for pain management services to improve care for people with chronic pain.
Question 21. Should Commitment 10 be included in the Framework?
A majority of respondents – 85% of those who answered the question – thought that Commitment 10 should be included in the Framework, while 5% thought it should not and 10% did not know. Among Individual respondents, 12% said they did not know.
We will support pain research in Scotland to develop improved care and treatment options for people with chronic pain.
Question 22- Should Commitment 11 be included in the Framework?
A very substantial majority of respondents – 98% of those who answered the question – thought that Commitment 11 should be included in the Framework, while 1% thought it should not and 1% did not know.
Question 23- Please explain your response to Questions 21 and 22.
A total of 90 respondents made a comment at Question 23.
Develop and agree national standards for pain management services
Reasons given for thinking there should be national standards for pain management included that these can drive consistency and quality of care, ensuring everyone can access the same support and care no matter where they live. It was also suggested that national standards would be of great use to those working on service design and would provide clear indicators of what people with chronic pain should expect in relation to treatment and services. Similar standards for other conditions, such as cancer, were reported to have led to improved clinical outcomes at a national level. An alternative perspective was that no two people are the same, and that setting national standards may negate a person-centred approach.
Respondents also commented on potential cost and resource implications including that, at present, some Health Boards have significantly more funding per capita than others. It was suggested that current workforce and workforce planning and development may limit ability to fully implement national standards. The importance that standards are achievable and are actually delivered was emphasised.
Several respondents commented on guidelines or standards that already exist, referencing:
- The SIGN guidelines and specifically Guideline 136 which it was suggested could be revised to include guidance for both primary and secondary care.
- The updated Core Standards document from the Faculty of Pain Medicine. There was a suggestion that Scotland does not need separate standards for pain services in the light of these standards.
- Draft Quality Performance Indicators for Scotland prepared for the Scottish Government by NRS Pain/SPaRC.
However, it was also argued that while standards are already in place there is no independent audit to establish whether or not they are met.
Some respondents commented on the importance of collaborative working and on who should be involved in the production of national standards, including a view that standards developed in consultation with all relevant stakeholders are more likely to succeed at the implementation stage. Specifically it was suggested there should be:
- Consultation with frontline workers.
- Co-production with people with lived experience of chronic pain.
Other points raised with respect to national standards included that they should:
- Be informed by evidence.
- See pain management as a human right.
- Put the patient at the centre.
- Reflect a multidisciplinary approach to care.
- Be applicable to all healthcare settings where patients are being treated for chronic pain not just pain management services.
- Be simple and both doctor and patient friendly.
- Support implementation of other relevant standards, policies and programmes for Government.
- Consider the role of socio-economic inequalities in preventing access to adequate and appropriate care for individuals.
- Take account of local demographic variations.
It was also suggested that there is a need to improve communication at the interfaces of primary and secondary care and with chronic pain specialist services, and that improved understanding of pathways and referrals, and the roles for the different services and professionals, would be welcome.
Support development of improved care and treatment options
There was wide support for further research on chronic pain, although also a suggestion that research could be at UK level. It was suggested that research could improve delivery of personalised medicine, with references to person-centred treatments that ensure people get the right treatment at the right time. A further suggestion was that robust research will allow healthcare professionals to bring a consistent message to patients and build confidence in agreeing choices around the most appropriate treatment.
However, there were also requests for clarity and detail with regard to what 'support' actually entails, and how research outcomes will be disseminated across a disparate workforce.
With respect to the type of research that might be carried out there was a suggestion that discussion is needed around priorities and inter-disciplinary collaboration. It was also suggested that both clinical and academic pain research should be included and that incentives for Higher Education Institutions to reach out to pain services may be helpful. It was noted that the research burden tends to fall on clinicians who are time limited, although also that closer integration between academic and applied pain professionals is developing. Supporting clinicians to become Early Career Researchers and having dedicated researchers embedded in a Health Board's pain service were both suggested. Building on the existing expertise of SPaRC and NHS Tayside was also thought essential.
Specific suggestions with respect to areas of research that might be prioritised included:
- Areas of greatest patient benefit or where there is lack of evidence.
- Brief interventions that have the most positive impact on individuals, given the limited time with healthcare professionals that is available.
- Rehabilitation and ways of facilitating practical interdisciplinary working using contemporary methodologies.
Other points on research included that it could or should:
- Be driven by the National Standards and match the scale and impact of chronic pain in Scotland.
- Consider how the complexity of the 'real world' chronic pain population can be better reflected, for example using databases that allow clinical data to be mined for research purposes.
- Be co-ordinated across Scotland with significant sampling across variations in geography, demographics, digital literacy, and socio-economic strata.
- Reflect all stakeholders involved in patient care.
- Encourage people with lived experience of chronic pain to both contribute to research design and to participate in research.
- Include women, both as researchers and as subjects, to ensure that their experiences and perspectives are accounted for.
- Involve a wider range of services in recruitment for trials to support developing a research culture.
Some respondents argued that research should not:
- Have only a psychological focus. It was suggested that much of the current focus is on psychological intervention trials, but that research should consider all aspects of chronic pain.
- Involve animal testing or animal products.
With respect to how research might be shared, it was noted that NRS Pain/SPaRC is well established in Scotland and provides a valuable platform to share learning.
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