The consultation paper explains that while the expectations set out by the existing Scottish Service Model for Chronic Pain may be appropriate, and reflect best practice, people with chronic pain say they still do not experience consistent, high-quality care when seeking support for their condition.
For the first time, the new Framework set outs a national vision for enabling people to manage chronic pain; to improve their well-being and quality of life.
Person-centred, effective and safe care that improves the quality of life and wellbeing of people with chronic pain in Scotland
Question 1 – Should this be the overarching Vision?
A substantial majority – 93% of those answering the question – agreed with the overarching Vision. A small number of individuals and a representative body respondent disagreed.
Question 2- Please explain your response
A total of 95 respondents provided a comment at Question 2.
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. It was described as very isolating and having the capacity to destroy lives. It was also noted that chronic pain can impact more widely, including on carers and healthcare services.
Reflections on the current situation included that chronic pain is poorly managed in a medical model, and that current levels of resourcing are a concern for many of the patients who access chronic pain services. This issue is returned to at Question 24, but in relation to the Vision the broader point was that it will have no practical application or impact if not resourced. Nevertheless, some respondents expressed a hope the Framework and Vision will lead to positive change
Although most comments were supportive of the Framework and/or Vision, some respondents voiced their concerns. For example, the Vison was described as generic, perhaps too idealistic, or as lacking ambition. There was also a concern that some of the language used, such as 'wellbeing', 'person-centred' and 'safe care' lacks clarity and is not meaningful.
Person-centred care: In either their opening remarks, or elsewhere within their responses, a number of respondents commented on the importance of person-centred care, with individualised approaches that recognise that everyone's circumstances and experiences of pain are different. An emphasis on enabling people to make changes and take ownership of their own health was seen as key. There were also references to ensuring that people are genuine partners in their care or to people being encouraged to work in partnership with pain services.
It was noted that providing person-centred care, including shared decision making, should be at the heart of everything health professionals do and that this is especially true of those living with long term conditions such as chronic pain. Giving the same prominence and commitment to supporting patients to manage their pain, as is given to managing other conditions, was seen as key. Another perspective was that all health-based visons and aims should have a similar focus to those proposed for chronic pain.
Although supportive of the sentiment, a representative body respondent thought that the Vision does not reflect the involvement and participation of the individual in the management of their own pain. Their concern was that it appears to describe services that "do things" to patients, and they were one of the small number of respondents that suggested revising the Vision to recognise clearly the self-care aspect of pain management. The specific wording proposed was "Person-centred, effective and safe services which support people living with chronic pain in Scotland to improve their quality of life and wellbeing."
On a similar theme, others suggested that there should be more emphasis on patient empowerment, including that the Vision should reference people being 'empowered to live well'. Ensuring that the approach to health and social care empowers people, including through co-production in the design and delivery of services, was seen as key to creating equitable outcomes and a shift towards prevention.
There was also a suggestion that a further aim should be added to the Framework, that 'Chronic pain is minimised through prevention and early intervention strategies.'
Effective and safe care: In relation to this aspect of the Vision, the importance of safety and not causing harm was highlighted, with other general points including that any approaches or interventions must be evidence-based and that it is important to reduce harms associated with pharmacological management.
One perspective was that, whilst patients should have a say in their care, it needs to be within the parameters determined by the evidence base. It was suggested that this not only supports the best use of limited resources but also ensures no unnecessary physical and psychological harm is done.
Quality of life and wellbeing: Focusing on quality of life and wellbeing was seen as crucial, including because it creates a focus on reducing the impact of chronic pain on patients and their families. It was also noted that it is important to promote both physical and psychological wellbeing.
Other related points included that improved quality of life can encompass people becoming more engaged within the local community and being supported to access meaningful occupation or a return to work.
Fit with other relevant strategies, plans or principles: Respondents identified a good between with the Framework and/or Vison and a range of other key national or local statements. These included Scotland's Quality Ambitions and a Health Board's own objectives.
The Vision was also described as being in line with the principles of Realistic Medicine.
Other suggestions for change or addition: In terms of specific aspects that could be clarified, suggestions were that the Vision's scope is adults only.
There was a call for the Vision to establish clear leadership and governance arrangements, and not give the impression that the Framework exists in a vacuum. The connected suggestion was that the Vision should include a clear statement of the responsibility that sits with the commissioners of chronic pain services for making improvements to those services.
Other suggestions were that the Vison could reference and/or emphasise:
- That many people live with pain, and that living with chronic pain needs to be seen as the same as any other neurological condition. There was also reference to the importance of those who live with chronic or persistent pain being identified.
- One suggestion was that the Vision should be framed around the resources (both in terms of services and staffing) that will be made available. Issues associated with current and future resourcing on chronic pain services are discussed further under questions relating to the implementation and delivery of the Framework.
Finally, it was suggested that the Vision could helpfully be underpinned by a commitment to prioritising research. A connected point was that improving our understanding of the factors that are associated with good and poor outcomes for people with chronic pain should be an important research priority going forward.
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