This summary presents key findings from the independent analysis of responses to the Scottish Government's consultation on the Framework for pain management service delivery (the Framework). The consultation was launched on 6 December 2021 and closed on 28 February 2022.
In total 114 responses were received. Twenty-six responses were submitted by organisations and 88 by individual members of the public.
In their further comments, a number of individual respondents referred to their own experience of living with chronic pain, sometimes over many years. They spoke of the detrimental impact that living with chronic pain has had on their lives, and sometimes of their difficulties in accessing the healthcare and support they needed.
We all experience pain as part of a normal response to injury or illness and treatment of the underlying medical issue or condition may resolve the pain. However, pain may persist beyond normal tissue healing time, or in some cases has no identifiable underlying cause. Chronic pain is pain that persists or recurs for longer than three months. It is a separate condition in its own right, and not merely an accompanying symptom of other diseases. Chronic pain is a common condition and estimates suggest it affects between one third and a half of adults in the UK. In Scotland it is estimated that 5% report severe chronic pain, which means it impacts their daily activities and quality of life.
The impact of the COVID-19 pandemic
Development and consultation on the Framework were carried out during the COVID-19 pandemic. As with those in the rest of the UK, pain management services in Scotland were impacted by the pandemic and while most services have now been restarted, Health Boards and pain teams continue to face challenges as the NHS recovers. In the consultation document the Scottish Government set out that they intend for the Framework to guide Boards and other providers in their work to rebuild pain management support.
Overall, while a number of respondents to the consultation acknowledged the impact of the pandemic, most respondents focused on issues they had identified, or which existed, prior to the pandemic. This suggests that most respondents did not consider the status of services during the pandemic as representative.
Person-centred, effective and safe care that improves the quality of life and wellbeing of people with chronic pain in Scotland
A substantial majority – 93% of those answering the question – agreed with the overarching Vision.
In explaining their support for the Vision, a number of respondents who noted that they themselves live with chronic pain, highlighted the impact that chronic pain can have on people's lives. Some expressed a hope that the Framework and Vision will lead to positive change.
An emphasis on enabling people to make changes and take ownership of their own health was seen as key. It was noted that providing person-centred care, including shared decision making, should be at the heart of everything health professionals do. Focusing on quality of life and wellbeing was also seen as crucial, including because it creates a focus on reducing the impact of chronic pain on patients and their families.
Aim A: Person-centred care
A substantial majority – 96% of those answering the question – thought that Aim A should be a priority. A substantial majority – 90% – also thought that Commitment 1 should be included.
In their comments a number of respondents, including individuals with lived experience of chronic pain, commented on the importance of being able to access the right information. However, some respondents reported that they have not received the information and ongoing support they needed. Improving quality and consistency was seen as beneficial to both patients and healthcare professionals. The importance of information being available and accessible to all was also stressed.
Aim B: Timely access to care
A substantial majority – 97% of those answering the question – thought that Aim B should be a priority. Commitments 2 and 3 were supported by 95% and 91% respectively.
In terms of offering the right care, how services should work together was a central issue for a number of respondents. There were references to the development of referral pathways. A number of respondents highlighted the importance of adopting a multidisciplinary team (MDT) approach in primary care. However, there was a concern that it is not clear which mechanisms will be used to ensure that NHS Boards take steps to improve their planning and delivery of services.
Although digital services – including consultations – were seen as bringing real benefits, a number of respondents also commented that patients should also have the option of face-to-face appointments. It was acknowledged that technical or personal issues will mean that the digital approach is not right for all and there was support for the reference to using digital technology 'where appropriate'.
Aim C: Safe, effective treatments
A substantial majority – 93% of those answering the question – thought that Aim C should be a priority. Commitments 4 and 5 were supported by 94% and 95% respectively.
A number of the respondents addressed what is meant by 'effective'. It was seen as important that treatment provision is based, as far as possible, on best available evidence of effectiveness. A common theme was that it will be important to share information about which treatment options are effective, and in particular to share messages that self-management is an effective treatment.
Some of the comments addressed current variations in the treatment people receive. For example, it was suggested that as a patient, your treatment will depend on where you live. It was considered essential that patients should have equitable access to effective treatment regardless of their Health Board area.
With reference to effective treatment options, there was support for the Framework identifying a range of options and it was suggested that everyone should be offered choice. There was a view that, if a patient has a choice of treatments, and they are involved in decisions, they are more likely to comply with the treatment.
Aim D: Improving quality of life and wellbeing
A substantial majority of respondents – 92% of those who answered the question – thought that Aim D should be a priority. Support for Commitments 6 to 11 ranged from 98% to 85%.
General comments included that a national approach to training and sharing of best practice will be important to ensuring equity of access and consistency of services. However, it was also argued that 'quality of life' and 'wellbeing' need to be defined.
Training for healthcare professionals
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. Although there was broad support for sharing best practice, there was a concern that this has a top-down feel.
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.
Data on chronic pain
In relation to using data to improve services and support, some thought a data driven approach makes sense, but there were also reservations, including that time might be spent on reporting and evaluating data at the expense of treating patients. With respect to the collection of data, the point raised most frequently was that this must include patient experience feedback.
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.
Reasons given for thinking there should be national standards for pain management included that these could 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 provide clear indicators of what people with chronic pain should expect in relation to treatment and services. An alternative perspective was that no two people are the same, and that setting national standards may negate a person-centred approach.
Research on chronic pain
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. 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.
Implementing and delivering the Framework
Barriers and opportunities
In terms of barriers, many respondents saw funding as a potential barrier to implementation of the Framework. Some referenced historical underfunding of services and plans to reduce pain management services, and it was noted that the draft Framework does not identify how funding will be addressed.
Low staffing levels and lack of time were frequently identified as barriers to implementation of the Framework. While it was acknowledged the draft Framework offers support to implement a workforce plan, it was argued the solutions need to be more robust to ensure effective person-centred care can be delivered. Significant difficulties in recruitment of allied health professionals in chronic pain were also reported.
Some respondents commented on the potential impact of COVID on implementation of the Framework, including in relation to the effects of the pandemic on staff – their redeployment, fatigue, low morale and lack of training opportunities.
Specific points were also made about primary care and the role of GPs including a view that not all GPs are willing to refer patients to specialist pain management services, or that GPs may decide to prescribe medication to treat pain without investigating the underlying cause.
The opportunities referenced most frequently were to improve quality of life for patients and to engage with, listen to and involve people with lived experience and carers. Some respondents saw the Framework as an opportunity for a change in culture and practice, a chance to do things differently, or to change attitudes and beliefs in relation to chronic pain and its management.
Respondents also saw opportunities for improved education and training for healthcare and social care staff, including opportunities for healthcare professionals in other specialities to develop their skills around pain management.
Opportunities for improved multidisciplinary team working were highlighted, with a suggestion that shared patient care models that exist for other health conditions could be extended. There were calls for improved connections between primary and secondary care, for better links between health and social care, and for improved links to mental health and addiction services.
Opportunities to provide greater consistency of care and standardise service delivery were suggested, including an opportunity to standardise and rationalise both pharmaceutical and non-pharmaceutical prescribing across NHS Scotland.
Assessment of impact
In relation to the groups who will be directly or indirectly impacted by the Vision, aims and commitments, general comments included that the Framework should adopt a cohesive approach to tackling health inequalities, in line with the recommendations of Audit Scotland's report NHS in Scotland 2021. It was suggested this should be reflected in development of a strategy to tackle inequalities, focusing on programmes related to women, ethnicity and social deprivation.
With respect to protected characteristics under The Equality Act 2010, respondents highlighted potential issues relating to older people, people with life limiting conditions, and women, including women with caring responsibilities or who may experience cultural barriers that prevent them coming forward with concerns about chronic pain. There was also reference to the traveller community, people who require translation services and those from ethnic minority communities.
With respect to the Fairer Scotland Duty, respondents made reference to economically disadvantaged communities, homeless people and those disengaged from services, people experiencing digital exclusion, people with drug or alcohol issues and those in contact with the criminal justice system.
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